Coming Soon!

Ok so the holidays have been crazy and I'm migrating to a Mac (thank you Santa!).

Needless to say I've been busy. Just had my visit following Cycle3 and things look great. I have a lot more details but have our annual NYE party tomorrow night so expect more details in the next few days. I hope everyone can stand the wait (actually, I'm not worried about that - you'll get the update when I post it, so there! ;)

Happy New Year to all!


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Need O+ if you can help!

As I mentioned in a previous post, a close rugby buddy of mine was diagnosed with AML (acute myeloid leukemia). Unlike my disease where they are attacking the proteins with an intention to harvest and then transplant my own cells, he's in a position where a transplant of his own cells is not an option. He's also having to go thru a lot more with respect to chemo, etc.

The biggest issue though is blood and platelets. A bit of a lesson. I have O- blood, sometimes referred to as babys blood as it can be used for almost any blood type. My friend Kieran has O+ blood which means he can only get O+ blood, which isn't readily available. Hence this request.

Anyone in the NYC area with O+ blood that can donate please do. I've included a link below from NYU that was provided by Kieran's sister. Blood and platelets are needed but you must be O+.

Thanks, in advance, for anyone that's able to help!

Patient: Kieran Holohan
NYU Hospital 31/1st
The following link should give you all the details necessary. You can request the donation go right to Kieran. If not needed at the time it will be given to someone else - which is how Kieran will be able to spend Christmas with his family, thanks to the blood of others. Please help if you can!
http://www.med.nyu.edu/patientcare/guide/blood-donations.html


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Hot off the presses

Just got my labs back:

Calcium - 8.4 (just below the minimum norm value - where previously I was worried about it being high)

Total Protein - 6.3 (6.9 is the minimum, norm value so now my protein counts are low! From Oct'08 they've been 9 and above)

IGA - now this is where the fun starts. *** 276 ***. Yes, 276 - my IGA COUNT IS NORMAL!

What does this mean? Beats the F out of me but I'm celebrating tonight!


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Let's Reiterate - Get a Check Up!

Ok - so I happened to look at my blog and realized, "holy sh^t - I write alot." Some of you have reached out to my parents or others and have told me you've enjoyed my viewpoint (some have even said I come across as funny!) There are some things I've written that are relevant to the moment and there are others that should be repeated - and here's where I get on my soap box (yes, again!)

GO TO THE DOCTOR - GET AN ANNUAL PHYSICAL.

For those with the attention span of a flea - LOOK A NAKED GIRL - NOW GO TO THE DOCTOR AND GET A PHYSICAL!

Yesterday a rugby buddy of mine FINALLY decided to go to the doctor. Basically his wife had to promise he wasn't seeing her side of the bed until he did so. Bottom line, he was lethargic, no energy, but the worst piece was bruising at the least amount of contact. Within 48 hours he was diagnosed with Acute Myeloid Leukemia, admitted to hospital and started on chemotherapy.

It's not so much that he found out he was sick - it's that it took him so long to go to the doctor to find this out. Get an annual physical - get it every year (for those who's English, albeit their primary language, don't really get that last point - 'annual' means every year!) For the next 10 callers that prove they've had their physical this year I will send you a Tootsie Pop!

On a serious note - I was lucky in that I was able to diagnose my disease prior to it having any serious impact on my body. And all because I finally went to the doctor (I had actually missed a year). It's a pain in the ass (especially the prostate test for those of you old enough) but worth it in the end (how's that for a pun!) I know my friend will kick his disease just like I know he will tell his wife, when it's through, that he can get at least one more season in at hooker (and i'll be his number 8 any day of the week!)

Cycle3 starts tomorrow - should have results and numbers coming after tomorrow's doctor visit. Till then GO TO THE DOCTOR!

End of Cycle2

I've arrived at the end of my second cycle of chemo and, without official medical opinion, my numbers look great. Red blood cell production (red count, hemoglobin, hematocrit) are all moving up from thenlow range into the normal range. They aren't there yet but they are all higher than they have been in quite awhile. White cell counts are still low but I hit 8 and change this past week where the numbers have been 4-5 for the last six months. Where white cells are the antibodies used to help your immune system my disease has one anti body going crazy and the rest have been somewhat suppressed (again, my non-medical opinion). This number moving into normal is good.
Total protein has dripped to 6.9 which is the low end of normal. Any lower and my protein levels would be "low". It was this marker (at 9.2) that originally pinpointed the fact there was an issue. This number dropping so low is a great sign. Globulin is also an indicator for the IGA number. Globulin hit 3 on the last visit where it was between 6-8 over the past six months. Next Friday I will start Cycle3 and will have full blood work done. Last IGA count was 1700 (down from 4200) so I'm not sure what to expect but
I'm hoping to be in the low 1,000 range. I'm really unsure what I should expect. The high end of normal is around 400 so that's the target.
The only issue I faced on this cycle was hot palms. Really hot palms! I had some acid reflux issues and they recommended I use Zantac. Immediately after that I found my palms burning up. I stopped the Zantac and the palms continued. I'm being told it's a reaction to the dex (steroid). The one thing you can look forward to as the dex/velcad wear off is a departure of the constipation! Time for a big steak dinner with broccoli!!!

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Working in a vacuum!

Imagine yourself on an deserted island. Your only means of communication is paper, ink from some red berry and a collection of empty bottles. You keep writing things, putting them in the bottle and setting them out to sea. The only issue is you never get any bottles back!

If you have a comment click and add it below - send me back a couple of bottles!

And we are thankful?

Ahh the holiday traditions - the three F's: Friends, Family and Food. With thanksgiving now behind us we reflect upon the wonderful day we enjoyed. The prep time the evenings before, for both food and cleaning. The arguments the morning of for what clothes the kids should wear (and what clothes they DIDNT want to wear). But all in all a most enjoyable day and, compared to years prior, almost stress free. For those of you reading this blog as a tourist (aka you don't have MM) this will be a nice read. For those of you reading this blog as a local (aka you have MM and may be going through with RVD now) this an important post so please pay attention.
Let's go through the lineup. The day started with a massive selection of cheeses and prosciutto/spinach quiches. The Danish Bleu was my fave with just the correct amount of pungent bite to go well with the dried figs. The quiches are always a winner and this year was no different. There was, of course, a selection of crackers and breadsticks to complement the cheeses. Once the turkey was out of the oven we could warmup the rest of dinner, which was plentiful. We had spaghetti squash lasagna (a recipe from the Italian Beauty Giada) that was almost decadent in it's sweetness. You would never expect squash to be sweet like this but it could have been a dessert and put the sweet potato casserole to shame in the sweet department. Sweet potato casserole (since I already mentioned it) was also a winner. I was afraid it wouldn't be the same style as I was used to having most of my life: brown sugar, nutmeg, cinnamon, marshmallows. You can't have turkey day without it. Mashed potatoes - a must have for any thanksgiving but I have to say they paled to everything else that was offered. However, when paired with the gravy they were superb! The stuffing was mom's normal recipe - a mouth watering mix of bread crumbs, celery, carrots, stock and Bell's poultry seasoning. I believe it needed a bit more time in the oven to crisp up as it was a bit soft but still had great taste. The corn muffins (or as the kids referred to them "cupcakes") were a big hit for the kids, I unfortunately was unable to sample and hence can't provide an honest review. The cranberry sauce was grand as usual, regal in color with a tartness to pucker your mouth but a sweetness to offset the tart and help provide a great complement to the meal. And the other regal-in-color food was the beet salad - I'm a huge fan of beets and this mixture of baby beets with goat cheese was an absolute winner. Last in the sides department was the Brussel sprouts with bacon. I'm sure there were other components to this dish but, like beets, i'm a huge fan of Brussels sprouts and as they say on Iron Chef, "bacon with anything is good!"
The turkey, using the Italian Beauty's Herbs de Provence recipe, was again phenomenal. We brined the turkey two nights prior and dressed the turkey the evening before. The fresh herbs and citrus flavors (as opposed to more traditional stuffing) coupled with the brining process makes for an extremely moist and delectable bird. In addition to all this there was wine aplenty to help lubricate both the food and the conversation.
All of this lead to the inevitable conclusion - dessert! There was a pumpkin pie that made my hair stand up it was so good. The apple pie, almost like an apple crumble in pie form was great with no dry crusts! The brownies were dry and crunchy on top but moist and fudgy within. Of course there was RediWhip to complement it all and coffee to round out the night.
Aside from the muffins, I believe I successfully sampled every item on the menu. Unfortunately I could only fit one helping; a single plate (albeit heaping) of food. I don't believe I could have fit even one "wahfer-thin" dinner mint. My stomach was full to the brim, it was maxed out, stretched to the limit - full!

Another successful holiday to be thankful for - or was it...

HAVE I MENTIONED THAT A SIDE EFFECT OF VELCADE IS CONSTIPATION?


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Puberty - again?!?

Today is the second treatment day in cycle2. Like cycle1, I am experiencing a reaction to the revlimid - at least this time I was prepared for it. On Sunday I felt it coming on and took a zyrtec to fight the itch before it came. I never got the itch like last time but I'm definitely having the reaction.
Where my gut, back and legs all feel 45 years old, my forehead looks like I'm 15! Across my entire forehead is an acne style breakout caused by my reaction to the revlimid. To add superhero status to this, I have two, almost glowing, red marks on the inside of my eye socket giving me a very otherworldly look as if I could leap talk buildings (of course the suit kills the look but I'll work on that.) My ears are also flaming red on the top and behind in reaction to the rev.
But I'll take puberty anytime if it's going to get rid of this mess inside of me. At least I don't have to worry about any Jr High dances or asking girls out!
I'm getting treatment as we speak and just got this morning's labs back.
- blood basics are the same although my hemoglobin count is increasing (which is good)
- for the first time my "page1" of the labs has NOTHING "out of range"!
- globulin dropped to 3.7
- total protein at 7.7
- calcium at 8.7
All normal!
On that note, I'll close for the day with this thought: be thankful for all you have, be helpful with all you can - just always make sure you're having fun and have a pint for me! I hope everyone has a happy Thanksgiving!


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Sleep is NOT over rated

I began cycle 2 yesterday. This means I got my dosage of dex, velcade, and revlimid. I also got my monthly dosage of zometa. (I did not get my flu shot as they hadn't gotten their shipment as of yday) Now granted, I did go out for Malaysian food (and 2 beers) but stopped for gelato and coffee afterwards. The coffee may not have helped do anything but assist in kicking the Dex (steroid) into high gear. In other words i was in bed last night reading, tossing but I'm working on basically no sleep and a huge schedule ahead of me today.
715 haircut
8 (more like 830) skating
11 swimming
1230 Taekwondo
2 playdate
5 dinner/playdate

Luckily I may be able to sneak in a nap during the 2p playdate. But right now I'm updating my blog so that I won't fall asleep at swimming! Need more coffee!

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The Other White Meat

I lived through SARS and was more scared of alcohol poisoning than I was the bogus issue that arose over there at the time. I won't complain as all the wives and kids went home leaving us poor, defenseless chaps to protect the bars! So swine flu catches me a bit tongue in cheek and I've not really considered it a big concern. And now it's being made into one for me.

My son got his H1N1 vaccination today (god forbid we offend Arnold and the pork industry). There are two types: the shot and the intranasal application. The intranasal is a 'live' virus (where the shot is dead). This makes it more dangerous for someone who has a compromised immune system. At this time, that's me!

So at this moment I'm sitting at Molly's enjoying a Guinness while waiting for my wife to take the kids home from my parents apartment as I'm being quarantined from my son for the next day. Tomorrow I should get my own H1N1 shot and be well prepared to fight that live, porker virus!

Until then, I asked for a pint of Guinness and a pint of water. The barman misunderstood and provided me one Guinness and one Murphys so I will be conducting a taste test as I await my order of pork chops w/ pork rind chips! I'll beat the swine at their own game!

...I think it's good!

This week I'm in my "one-week off" mode until Friday. Last Friday I went in for my checkup to confirm how the first two weeks of RVD have impacted my system. I'm not an expert (but I did sleep in a Holiday Inn Express last night) but I have developed a bit of a background on what means what and I've been tracking bloodwork and numbers in a spreadsheet since September last year. And I have to say the results have been quite amazing to me! Here's the breakdown of everything.

Basic blood counts have stayed what they've been in recent months.

- WBC counts are in normal range

- RBC counts are low averaging around 3.4 (should be 4.16>5.72)

- Hemoglobin and Hematocrit are also low 11.4 and 33.5 respectively

(should be 13.5>18 and 38.7>49.9 respectively)

Total Protein was the original indicator that helped me identify the fact that I had Multiple Myeloma. Since September of last year that value has never been less than a 9 (should be 6.9>8.9). As of last Friday my total protein count was 7.9. That's down from 11.9 the previous check (and 11.5 and 10.8 the two times prior.)

Globulin is another factor that is monitored. In Sept '08 it was at 4.0, since then it's been fluctuating in the mid-6's (normal would be between 2.3>4.2). My last three checks were 8, 7.1 and 6.7. As of Friday that number was down to 4.1.

Calcium, which is used to identify the fact that potential bone degeneration is taking place, is another flag. Normal is 8.5>10.5 and my last three visits were 10.8, 10.4 and 9.7. Friday's visit was 8.7 (on the low side of normal).

The type of Multiple Myeloma I have is IGA Lambda. This signifies that the protein antibody that is present and overtaking the marrow is IGA (vs IGG or IGM) and is working in tandem with a "Lambda" Free Light Chain (vs Free Kappa and only appropriate as my fraternity was Lambda Chi Alpha!). The norm for IGA is 70>400 and my lowest count has been 2,900 but my average has been around 3,800. Most recently the numbers were 4116, 4370 and 3951 and that increase was the cause for taking the next step to the RVD regime. The free lambda numbers should be between 6.1>29.7 and most recently were 344, 357 and 379.

As of Friday IGA was 1759 and free Lambda was 69.7.

(THIS IS THE PART WHERE EVERYONE STANDS UP, GOES "WOO HOO" AND DRINKS A BEER!)

So what does this mean - well I had to read one of the Doc's messages twice to realize he actually did say these results were "fantastic". The other doc said this is a good sign. Neither of them is quite as impressed with the results as I am but then again, I'm always impressed with myself ;) Bottom line, the results are good. This Friday begins Cycle2. Before that, I have my regular doctor visit so I'll be able to see what, if any, changes have taken place in my 'week off'. Till then, here's to keeping the numbers low!

As we always prove, it truly is a small world.

For those that know the family, it's difficult for us to go many places without having some bizarre 'small world' story. So it's no wonder that it happens now.

Saturday night, out with friends at an Indian 'fusion' restaurant (Bombay Talkie). Someone in the booth next to ours gets up and the person next to him has to stand as well. When he stands he turns and we both look at each other an do a double take:

"Hi Doc - how are you? My numbers came back yesterday and they dropped significantly." Idle, brief chit chat ensues, "I'll let you get back to your dinner, great to see you."

Our two friends are wondering a) you're on the West Side of town, how do you know someone and b) doc? I then had to explain that the person sitting directly behind our friends was the same person that extracted a piece of bone marrow slightly larger than a large grain of Basmati rice from my upper ass just last week. You don't expect to see that doctor out at dinner. But when you are part of our family, it becomes common place.

I'll have final numbers tomorrow and will post status after my first cycle of chemo.

Yin 5 - Yang 0

During my treatment yesterday I asked what I should do about the Zyrtec as I've not had any of the scalp itch but I have been ungodly tired and wasn't sure if that may have something to do with it. They told me I could stop and only use it when I felt the scalp itch coming but I potentially may not need it as the Revlimid reaction is usually only for the first four days. So last night I didn't take the Zyrtec - nor did I get much sleep!
I awoke around 0130 for a potty break. When returned to bed I closed my eyes and rolled alot and around 0245 I started reading my book. Around 0400 I tried to go back to sleep and I was up about 2 min before my 0500 alarm went off. I'm not tired now but expect I'll be a wreck tonight! I wonder if I can use the 'quiet room' at work today!
One day I'll get my yin/yang balance back!

It's now time for the penguin on your Tele to explode!

For those of you expecting to find a Monty Python blog, my apologies - I have been told my blog is quite funny but I would never endeavour to think it might rank up there with the MP. This blog covers my diagnosis of Multiple Myeloma, the fact that it has prohibited me from playing rugby, drinking incessantly; it has caused me to eat some miserably horrid pacific-seafood concoction and have myself poked/prodded and tested for quite some time now. Having said that, it is time for a bit of comic relief in the blog. So this next bit has absolutely nothing to do with my treatment or diagnosis - it was just something I found funny and appropriate.

First - what is the etiquette in the cancer treatment center? I watched one lady, making her tea at the coffee/tea/water/snack counter in the waiting room spurt creamer across the counter, twice, only to find out she's waiting for an appt that isn't till tomorrow. I watched a second lady try to 'not' be intrusive while she got her tea during the time the other lady was making the mess. I was having coffee and was able to sneak in and trigger the Kuerig (due to my intimate knowledge from my folks house) and get out of the way. Apparently not in time to get out of the way of the spurting creamer. I was holding my jacket, saw the creamer spurt and did a quick lord of the dance back and out of the way. The lady apologized and I pointed at my legs and the floor and said she missed me - she pointed at my jacket and said she didn't! all down the front of my brown suit-coat - at it's 801 (I've not yet started my day!) Contrary to popular belief, the 'roids didn't take over and I was quite nice (my treatment for the roids was starting in 15 min so today probably would have been a different story! :)

Second - compliments of Pat's father - I had just returned from the hospital and this caught me as quite funny!

A sweet grandmother telephoned St. Joseph 's Hospital. She timidly asked, "Is it possible to speak to someone who can tell me how a patient is doing?"
The operator said, "I'll be glad to help, dear. What's the name and room number of the patient?"
The grandmother, in her weak, tremulous voice, said "Norma Findlay, Room 302."
The operator replied, "Let me put you on hold while I check with the nurse's station for that room."
After a few minutes the operator returned to the phone and said, "I have good news. Her nurse just told me that Norma is doing well. Her blood pressure is fine; her blood work just came
back normal and her physician, Dr. Cohen, has scheduled her to be discharged tomorrow."
The grandmother said "Thank you. That's wonderful. I was so worried. God bless you for the good news."
The operator replied, "You're more than welcome. Is Norma your daughter?"
The grandmother said, "No, I'm Norma Findlay in Room 302. No one tells me shit."

0 mph

The best response to my prior post was "HULK ANGRY, HULK SMASH THINGS!" After all the JerseyBoyz and Goodfellas on Sat Night I was definitely feeling that way (it was the pint of Guinness that finally calmed my nerves!) But as they said in the '70's - what goes up....must come down...HARD!
It's a bizarre, mixed, feeling to have one side feel like you could successfully fight a bunch of out of shape mobsters and the other side know you need a nap (at the same time). I think this is part of what has put my yin and yang out of sorts. I'm sure others will be quick to point out that I've always been imbalanced but I seriously was in bed by 830 on Sunday and around 9 last night - totally without function - just drop dead tired. I'll get two paragraphs in my book before I fall asleep hard (not 'drift' but 'DROP' to sleep!) Could this be the Zyrtec and other things causing this or is it just the Rev - we'll have to ask the docs and nurses. On another note, I've noticed a tingling in my right foot, calf down to ankle so need to confirm that's not caused by the neurapothy. Again, will check w/ the docs - noting here for posterity sake!

90 MPH

So the Dex is definitely kicking in. Where last weekend I was unable to notice a difference, the last few days it has most definitely been noticeable. My tipping point, or threshold for stupidity has dropped dramatically. If, on a scale of one to ten, with one being the lowest, I would usually trigger an insane rant (or muffled naughty word) at a level of 8. As of yesterday I believe that level has now reduced to .01.
Delivery bikers are my nemesis (I have the light you ignorant $&@&$!). Taxi cabs are a close second. Some clients at work have recently joined those ranks.
But on a serious note, I find myself blowing up more quickly with the kids. I'm trying to closely monitor as part of me is wanting to make sure the kids understand there are boundaries for what they can and cannot do. However, if my level of ptlatience has decreased then I need to make sure I understand that and deal accordingly.
To be clear with everyone I'm noting it here as it's something on my mind that I'm trying to monitor to keep balance. It isn't a problem and I don't need any assistance or advice. As I said at the very beginning, it's my post to rant and rave and if you find it interesting then great. If not, apols and I'll send you the link to Brittany Spears' blog!
That's all for now!


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Today's treatment is brought to you by...

Nothing exciting today. I did get a little background on the numbers I'm watching for now (vs what I've been monitoring more recently). The concern now is with the WBC counts (antibodies), the hemoglobin/RBC counts (good blood) and platelet counts (clotting ability). I'm tracking these in an iPhone app so I can at least stay aware of where I stand.
I arrived today at 0730 and it's currently 0906 and I've got another 20 minutes or so left on the IV. So my thinking I can be in and out of here by 9 was a bit off.


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Day 2 of Treatment

For those of you that have played online shooter games with my brother, you know what it's like walking around, KNOWING you're about to be nailed but not knowing when. You hope you get a chance to get him but you also know there's no way in h*ll that's working out. So the day after treatment 2 I'm walking around waiting for my brother to ping me with a clean head-shot just when I think I'm doing pretty well. After the first day of treatment, expecting one thing and getting another, I'm walking on the proverbial tight rope wondering what will happen today or the next day.

I slept well last night - didn't really feel like getting up. I no longer have this acne rash across my forehead like that girl from the Star Trek DS-9 or Voyager series (at least it's not as pronounced). I do however, feel a bit speedy and a bit dizzy. I'm working from home to be cautious and will try to get a nap if possible.

One other reaction not mentioned in last nights post was a rash, on my lower spine, about 8 inches in length. I hadn't felt it and it wasn't itching (that was the head). So the Doc recommended Lotrimin for the rash and asked that I monitor. For those not in the US, I'm not sure if you'll recognize Lotrimin or it's intended use. It's for jock itch - better defined as fungus around the 'package' that causes itching - usually acquired by those with an impetus for sport but not cleanliness (see prior post for reference to cleanliness, godliness and timeliness!). Now where I am so inclined to sport (and killing me not being able to play rugby) I am also so inclined to make sure that 'area' is clean and dry! I have NEVER had jock itch.

So if you come to visit and happen to be rummaging through my medicine cabinet, the Lotrimin is for my BACK, not my PACKAGE!

I'll keep everyone in the loop as things progress - be sure to stay tuned to my next "live" broadcast which I'll try to do Friday morning (it will most likely be very boring so have some coffee if just getting up or a beer (one for me) if you're just getting home from work.

The Early Bird

"The early bird gets the worm" is a truism worth noting and remembering. For my second day of treatment my schedule was as follows:
- 11:00 skeletal study (xrays)
- 14:00 labs
- 14:30 bone marrow biopsy
- 16:30 treatment

It's now 17:35 and I'm sitting in a room awaiting a nurse to come in and plug me in for my chemotherapy. I'm going to post this now so for those of you who got TaiTai's email on how to setup the RSS feed you can almost experience this realtime!

When I arrived this morning the radiology group was rip roaring and ready to go. My appointment started promptly at 1100 and I was done within 20 minutes. My next appt wasn't till 1400 so I had my labs drawn early, now I didn't need to be back till 1430.
I ventured around Union Square to keep myself entertained, got a bite to eat and finally decided to head back early. I was a bit over an hour early but surprisingly they put me in a room to see the doctor at about 1410 - I was early! And that's where my luck ran out!
The Doc didn't arrive to do the bone marrow biopsy till 1535, then we needed consent forms -the list of interruptions continued. When we finally got to the point we were all waiting for - my lying flat on a table while he sticks a rather sharp instrument into my pelvis to extract a piece of marrow and fluid - it was just after 1600. The marrow we got without complication but the fluid wa a bit more difficult. He kept having to go in deeper, to no avail. He finally had to "re-position"

**** LIVE UPDATE ****
1807 and the IV has just started. I've been informed that I have an hour of hydration in addition to the chemotherapy. I may get tobtuck the kids in.
****************
so repositioning means he has to take another jab - and this time he finds his mark! It's tough to describe the biopsy. You know where your skin is and even with anesthetics, you can feel when someone is under your skin - they're just not supposed to be there. And the "pop" that goes along with the removal of the marrow is just enough to grate your nerves. But the removal of the fluid is like a thousand nails on a chalkboard while liquid fire is shot down your nerve endings. The pain is numbed but you know it should be hurting!
Here's a quick pic of the bone marrow biopsy tool kit. I meant to get an after shot (blood everywhere, 3 stained slides, container with marrow) but I forgot.






The round container with the white lid is where my marrow ended up. I have no idea what everything else was being used for (and can't see it on this screen)

WAIT - U CAN ORDER FOOD?
one of the orderlies just came by asking who ordered the Pad Thai. I was so taken aback I just said no. I should have said yea as I've no clue when I'm getting out of here! Remember my comment about the chair vs the room? Well I'm in a room again today as the chairs are all full. Here's the IV tool kit (is anyone bored with my pic and play by play?)



And here's my IV that had to be done twice as she missed my vein the first time!


Notice the band aid at the top. That's the first stick. The iv is now in the vein at the bottom left of the wrist. I'm signing off for now but if anything else funny happens I'll add to the post.
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Son of an Itch!

If you've not read the previous post, please do as I wouldn't want you to get out of order and not understand the situation, as it stands, at this moment. Timeliness is everything (and right up there with the fabled cleanliness and godliness!) Which is why I'm posting about my first day of treatment (prior post) and the reactions I had to the treatment (this post) on the same day. Timely, eh? The potential reactions I mentioned before was the list of items for which I was forewarned. Here's what I took out of Friday's meeting (and worried over the entire weekend).

Revlimid will make you drowsy, take it at night. RBC/WBC counts may drop, you can't do anything about it till you know the counts which means next visit, so don't worry about it now. Velcade will make you constipated - focus on spinach, broccolli and those other 'moving' veg. Dex will knock your socks off, make you really speedy, you'll be looking for things to do, kick the cat (they actually said that), etc. Expect to be wired Sat thru Sun and crash hard on Monday. Do the Velcade and Dex in the morning

I FELT COMPLETELY NORMAL - I NOTICED NOTHING - AT ALL

Until Sunday around 4pm.

I took my daughter to her swimming class on Sunday. It was my first adventure actually in the pool at the 14th street Y. Afterwards we went for Ramen across the street - really good, Japanese style Ramen - Mia Loved it. We then went to the playground and I noticed my head and my rectal area (I couldn't just say butt) both itched. Yes, itched.

First thing through my head, "oh my god - my kids swim in that pool every week!" Second thing through my head, "i can't have been allergic to the Ramen - I'm not really allergic to anything". When I got home I took a shower to be safe and didn't notice much of a change. But it wasn't till 33o in the morning when I woke up scratching like an old blood hound with the mange. I couldn't stop - it was killing me! I had a glass of milk and went back to bed. I tried to get up and work out but that wasn't working for me. I went to work and was fine (again, no crash) but if I just touched my head it turned into a 5 minute scratch-fest complete with bouncing leg (if you hit my ear just right!)

A frantic message to DFCI informed me that this is the Revlimid - nothing to be worried about. A later message from a DFCI RN told me I could take Benadryl, 25-50mg - which put me out, like a light, in the third inning of the game (which is probably a good thing). I took another 25mg at 2am and at this moment I'm hoping SVCCC has something more for me when I arrive there today as this itch is driving me crazy!

So my biggest reaction to the treatment? It's a son of an Itch!

1st Day of Treatment: Part Deux

It's just about 30 minutes to hop the bus to the subway for a transfer to get over to SVCCC - which is why, when I guesstimated 20 minutes for the expedition, I was about 5 minutes late. I guess being tardy for your first day of treatment isn't on-par with expectations -- duly noted. And to quell any fears, I did receive my comeuppance.

First - The treatment area has reclining chairs, personal TVs and all the necessary accoutrement's to make this part of your experience as enjoyable as possible. The nurse asked if this was my first time receiving this treatment to which I virginally replied, "yes". To which she responded, "I'm going to put you in a room." My immediate response, again, virginally, was, "that's OK, I'm fine with the chair." And her rapid response was, "that's OK, I'm still going to put you in a room,"
Me: (wondering about my virginal situation)"why the room?"
Nurse: "I have oxygen and everything else I need in that room"
Me: "uhmm, excuse me?"
Nurse: "don't worry, we hardly ever need that stuff"

And in 15 minutes I was on a bed, with an IV in my arm awaiting the loss of my chemo-virginity.

The god of chastity belts reared his head in the form of Mrs Hannibal (yes, Hannibal) who informed me my insurance company had not yet agreed to pay for the chemo treatments so they regretfully inform me they may not be able to provide my treatment today. One frantic phone call revealed there was no pending approvals or rejections at the insurance company. Apparently my age and the chemo didn't go together so, internally, there was some confusion at SVCCC but bottom line it was cleared up and I was no longer a chemo-virgin!

The drugs (which I've outlined previously) and their warnings - life is a bowl of disclaimers!
Revlimid - nausea, tiredness, drop in RBC/WBC counts when the treatment starts.
- take this orally for 14 days and then skip for seven days.
Velcade - nausea, dizziness, constipation
- take this, via IV, twice a week for two weeks, then skip for seven days.
Dexamethazone (Decadon) - steroid - RUN FAST, WORK HARD, STRONG LIKE BULL! I was warned that I better have something to do on Saturday as I'm going to be extremely 'speedy' on Sat and Sun and then will crash hard on Monday. I was warned to tell everyone, it's the drugs, not me. Where I may have never before kicked the cat, I may actually kick the cat (mood swings could be fierce on steroids).
- take this, via IV, in conjunction w/ the Velcade.

More on actual reactions later.

This is only a test

Trying to see if I can upload text and photo from the iPhone (yes, they have an app for that!)



- Posted using BlogPress from my iPhone

First Day of Treatment

Today was the first day of treatment - I'll write in more detail later, for now, realize that my posting to my blog at 0130 doesn't mean the Dex has really kicked in - contrary - we are hosting a Halloween party tomorrow night so I have been up making 3 trays of Risotto (and will have to cook the meat tomorrow). I don't feel any different and feel like I can crash w/o problem.

But I'll post more detail about today's fun events later! Just wanted a place holder for this first day.

...3 months later...

So in a book, or in a film, there's that moment in time when the writer/director realizes that if they really included that uneccessary time period between plot points it would take away from the overall effect of the movie. It would be boring, uneventful, useless patter signifying nothing (ok - went off on a bit of a Shakespeare tangent there). The events during that time period were of no consequence to the overall, bigger picture. Hence, I was busy (as h*ll), it was summer (we played) and the kids are growing (to be a pain in the...)

...3 MONTHS LATER...

There truly hasn't been anything of consequence in the recent months. I've been taking the sushi, acting as a pin cushion and donating my circulatory fluids to tests and more tests. The sushi surprize is having no effect on me - it's not making me sick and it's not making me better. My numbers have been floating up and down but unfortunately, the numbers of biggest consequence have not been going in the right direction.

The type of Myeloma that I have is IGA Lambda. My IGA numbers, which should be 70-400, are averaging in the high 3,000's. My Lambda numbers which should be 6.1-29.7 are averaging in the 350 range. I hit the IGA 4,000 mark last visit and we decided to watch closely on this visit. Even though I hit 3,800 my total protein count (act: 11.9, range: 6.9-8.9) and calcium counts were both high so we are moving forward with the RVD regimen and getting off the sushi.

Su-Su-Sushi, Goodbye.... This evening's return did not find me loaded up with 112 caplets of foul smelling, regurgitated ocean life. I will be receiving a prescription of Revlamid and will begin my dosing in approximately 3 weeks. The dosing will be 2 weeks on, 1 week off, which will comprise one cycle. The Revlamid is taken orally for 14 days on, 7 days off. The Velcade and Dexomethazone is taken every three days (2x per week). The Velcade is taken via an IV (30 min in a chair) and the Dex can be done either via IV or orally. This is done for one week on, two weeks off .

This continues for 4-6 cycles or till my numbers reach a point where we can begin harvesting. The optimum result is the therapy causes my numbers to reduce down to normal, and, if lucky, potentially negate the need for a transplant (at this time). Otherwise, we will continue till my numbers reduce as much as they can (and reach some type of plateau.) At that point we'll harvest and look at doing the transplant.

While this may seem to be more serious in nature, I guess, it really is and has a proven track record at reducing the aspects of my disease that are most troublesome. Revlamid and Velcade are both attacking the cancer and problem antibodies. Rev is a derivative of Thalidomide (see previous posts for more detail). The Dex is there as a steroid to help boost energy, etc. I'm also being given something else (the name escapes me) to prevent shingles. The biggest issue I need to worry about is neuropathy (tingling/loss of feeling in toes/fingers).

So nothing more to report at this point. I'll do my best to keep the time between plot points more interesting!

Ok - work/kids/vacation = busy! promise to post something soon but everything's good (just way too busy!)

Tracking Data

For anyone interested, I've created an Excel spreadsheet to help track my bloodwork based upon the reports I get from SVCCC on each visit. I'm happy to share this with anyone interested. The data entry is based upon the reports I get from SVCCC but the basic data remains the same. I'm not a developer so you'll have to bear with the fact this is a very rudimentary spreadsheet/database to track your numbers. The entry form copies/pastes the data into a data worksheet and has conditional formatting to identify hi/low data (based on the reference range used by SVCCC). I've pre-built charts for IGA/Lambda, RBC/HCT, AST, and TotProtein/Calcium levels. The charts can be easily changed and updated with a basic knowledge of excel.

I'm happy to help anyone that needs it in setting up the sheet for themselves. The Myeloma Manager essentially does this but doesn't have the flexibility of charting that can be done in excel. Also, the Myeloma Manager is not available on a Mac. I'm hoping that someone can get this to work on a Mac as well. Please pass along my bloglink to anyone you think may be interested in this. The data is going to be primarily relevant to someone w/ MultMyeloma but any blood cancer could adapt this to their use.

My goal would be to take this kind of piece and make it into something that can be updated and placed on an iPhone app (see last post!) Any SDK types that want to play around let me know. I don't have a Mac so I can't develop it (but happy to try if anyone wants to give me a Mac!)

Thanks all - more info in the next week or so after today's 3 month check up.

Track Your Numbers

Most of you watching my blog are friends/rels/etc. and for that I am greatly appreciative. For those of you that actually have this disease and are just looking for my inane comments, then hats off to you! And this post might be helpful. I just found an app for my iPhone called myCheckUp which allows you to track information and then chart that information over time. If you're on a diet, tracking sugar levels, etc this is very helpful as it tracks values intra-day (multiple data points w/in a day's time). For those of us tracking reports weekly/monthly it's not as friendly but it's a good start, having something that is handy to keep track of the specific numbers of concern to you. I've sent the developers an email w/ comments to see if we can get them to focus on a few items: option for multi-day view/data entry, ability to maintain ranges to identify hi/low values, ability to include more than four custom fields (or increase the number of base markers they maintain) and, finally, the ability to import data or enter from a computer (and not have to enter everything on the iPhone.)

I'm not touting the iPhone (ok, i'm a HUGE buyer of the iPhone) but this kind of mobile ability to maintain data (when visiting another doctor, etc.) is key. For those w/ an iPhone that are interested you should be able to link to the app here:
http://www.vidaone.com/mcu_iphone.htm

I hope you find this useful and am happy to offer any assistance to anyone looking to bring in this data. The Myeloma Manager (thank's for the reference Dad) has been great, albeit a little clunky. Bottom line it gets the job done but is stuck on the PC and can't be mobile. This app opens another door (unfortunately only a crack as it's limited in what it can do but hopefully my powers of persuasion will convince them to do this!) If anyone is a developer for iphone apps and would like to work together on doing something I'm all ears!

More later - thanks for listening.

Can you say, "Hit By A Truck?"

On 15 July I started Zometa. Zometa is a bone strengthener. As I've explained previously (but will indubiously outline again here) Myeloma takes over the bone marrow and, when active, actually starts eating the bone itself, along with doing other really nasty things that you'll have to go back to a previous post to understand. BOTTOM LINE, WITH ME, - IT'S STILL ASYMPTOMATIC, OR NOT ACTIVE (that part put in for my wonderful, worrying mother).

Where the Docs can help control other issues brought on by the disease chemically, SHOULD something happen w/ my bones there's no real no fix. So the Zometa is used to strengthen my bones and to help avoid any issues that may occur. You'll all be happy to know that Zometa is also used for Osteoporosis (insert "you're getting old" joke here). Zometa is given intraveneously and I was warned that I will feel side effects in the first session, less so in the second and in the third I probably wouldn't notice. So the first thing they told me was expect to be feverish w/ flu like symptoms for the first 24-48 hours. They didn't tell me it would feel like I just got hit by a truck!


I was told to hydrate that night of so I plowed through 3 liters of H2O before bed. I woke up, felt fine, did my situps/pushups and went to work. By noon it hit me. My back and shoulders were killing me like I'd played rugby that weekend and had been stuck at second row! And yes, Pat, like my ususal out of shape performance, "too winded to run"-rugby. But I must have made a few tackles as my shoulders were killing me! So I got all the pain with none of the game - miserable.

As far as numbers are concerned, I'm continuing to be anemic where my RBC and HGB counts are lower. This is normal as the bone marrow creates the red blood cells and hemoglobin and I've got this rogue protein that's taking over my marrow. So, being anemic would cause certain issues: fatigue, problems w/ bleeding, etc. I've got none of these - well, correction, I'm at work by 8, getting home just before 7 and have a 5 and 2 year old. I am fatigued - but I don't believe I'm any more so than what you would expect in that situation! So, in short, I'm not feeling any of what they say I should be feeling - so that's good.

That's it for now - any questions? Post a comment (and the sushi is still foul, the worst is when you're slurping it and some of the melted ice drips down your chin and onto your dress shirt, "daddy, you smell stinky!"

A bit sudden, eh?

M: "hey, how are you?" Y: "good - how about you?" M: "all is good, but I do have cancer..."

For those of you that are on the receiving end of a conversation much like this, my apologies. It's tough to explain, as I'm no longer wary about telling people but I'm also not looking for pity or concern (and nobody's really done that except for the ladies at "The Club"). I've been dealing with this since October and I've got a sense of understanding and perhaps control. For me, I understand where I am and what's going on. For you, it's like a slap in the face! But I've got a load of long-distance friends and when people ask what's new and I say, "check out this link" they're expecting some really bad joke or bizarre website. I guess in a manner, I've fullfilled that - it's not really a bad joke, but any site talking about frozen fish sushi is bizarre!

But I can comprehend the awkward position in which I put some of you when I've not spoken with you in years and within 5 minutes I'm laying down the C-card. I guess the only thing I can say is if I wasn't as comfortable as to where I am and how things are going I wouldn't have dropped that bomb so quickly. So take that to heart and realize I am OK - I just want to let you know and this is really the easiest way to get that done.

Feel free to pass along as you desire - I'm not keeping this from anyone, just did not want to publish this on Fbook and haven't really told people at work as it's too busy and I don't have time to deal w/ some of the questions. But I'm not trying to keep it from anyone, so especially if you're overseas please pass this along and apologize on my behalf for not having notified anyone directly.

So back to the sushi - month two review is coming up on Monday. So Sunday morning I start peeing in a bottle (i'm shooting to fill three this time!). Monday is my visit and first step after labs is my bone density test. I'll put on my stethoscope and white coat and explain officially, "the bone density test is going to test the density of my bones." That's all I know but they are checking to see if there are any issues and if I should start on a bisphosphonate (a bone strengthener). If all works out well and my bones are "dense" then I am putting in an official appeal to the docs to allow me back out on the rugby pitch. The wife's not happy with that but it's going to help keep me sane. I can no longer be the team photographer. I've been doing my pushups/situps, I'm floating between 185/190 (85/86kg) but I've been doing absolutely NO cardio - so that needs to start but I definitely want to get back out there, even if only for a half.

I guess I'll know later next week. Hopefully it won't take as long as getting the MRI results - I think I know more than the docs know on that front. My back is ok, more annoying than anything at this point but they're looking at that Monday as well. So Monday is lab-rat day and I'll post more next week.

Again, thank you for understanding and remember, I'm fine - read the Blog and you'll get an understanding of what's up and stay tuned and I'll post updates! And remember, as quoted by another Clinical Trial member, "that stuff is foul!" Long Live the Sea Cucumber!

First Month Review

On June 2nd I went in for my first cycle checkup. I was also going in with a pain in my back that started with me putting my daughter in her car seat on our way to the airport for our return from our vacation. When the doctor heard there were back pains I was immediatly sent off for x-rays which showed no fracture or other issue. It did show that I have arthritic hips (gotta love rugby!) Blood work showed a drop in IgA levels but still high, Red Blood Cell counts and hemoglobin counts are low but stable (not getting lower). Calcium had a slight decrease and total protein was stable. AST is still high but not increasing. All in all no real change (either way). So I can't say the sushi's doing anything at this point but I'm still keeping hopes high.



Additionally, lots of you have talked about donating marrow for a transplant. The good news is I'm not in a position to need a transplant at this time. When (if) I do then it will most likely be my own cells that will be transplanted. If that doesn't work the best match will be my brother (I have confirmed we do have the same genes and the postman didn't play basketball, he's just good at it.) If he's not a match then it's up for grabs - could be anyone but most likely would not be any of you. Having said that, it may - so how do you help?

http://www.marrow.org/JOIN/index.html

This site is a marrow donor site and you should be able to register there. What this means is you may be a match for someone you don't event know. So if that occurs - I will personally buy you a beer - a really big one!

Traveling With Sushi

So you're going on vacation and want to bring your frozen, fishy gelatin snack- is it a liquid? Next up on this evening's episode of You Guessed It - the TSA:

"Dear sirs, I have been diagnosed with a form of cancer and am currently participating in a clinical trial that involves my ingesting a jello-like substance composed from various forms of sea life. I will be traveling between X and Y dates and would like to know the appropriate manner of presenting this material as I will be required to take it on the flight, in a frozen status. As I'm unaware if in fact gelatin is considered a "liquid" I'm bringing this to you for clarification. Although the container will be under three ounces there will be 48 containers in total, all conviniently foil wrapped with a beautiful blue logo that looks nothing like a medicine. So I am asking if you foresee any issues and how might I best broach this topic when approaching security at the airport in New York (well actuall NewArk!). Many kind regards...the patient."

The response:
Thank you for your email expressing your concern regarding the Transportation Security Administration (TSA) medical liquid exemptions at the securty checkpoint. And they then went on to paste the exact wording listed on the website regarding liquids, etc being placed in a plastic bag, limited to 3 ounces, etc - verbatim. Nothing relating to my question and no clarity as to whether or not this would be allowed or if I would have any issues.

Bottom line, I went thru security three times, my frozen sushi, twice. It was not a problem, they were able to xray it so no concerns. However, dvd players and kindle's are considered electronic devices and do need to be taken out of the backpack in advance of the xray machine. Hats off to the xray operator that recognized the kindle, "Sir - do you have a kindle also? That needs to come out of the bag as well." I then needed to put my flip-flops back thru the xray machine again (as they may have picked up some type of weapon while I was navigating from one side of the xray machine to the other.) The sushi arrived w/o issue. When we went to Disney, I was suprized to find there was no freezer compartment in the refrigerator in the room - when I called downstairs, in truly Disney fashion, "just bring it to the bell services, they have a freezer downstairs for just this need". Each night I showed up for my 4 shots of jello and they took the cooler out, I got what i needed and they put it back - gotta love the house of mouse!

I did need to set an alarm as the habit I'd built at home was easily forgotten when I got on vacation. However, I survived, as did the sushi. It still tastes like crap!

More later as I've been through my first month of 'product' and will post results from bloodwork, etc - stay tuned - same Bat-Time, same Bat-Channel!

"So what's it like?"

Contrary to popular belief, I'm not 'rock-hard' all the time and I don't feel like I can jump tall buildings. However, I do know that I can swallow gelatin, fish-like substance without breathing through my nose (it truly does work!) You still need to get something in your mouth before you finally do breathe through your nose (or run the risk of tasting rotten, sea-faring, mystical 'stuff'.) I've been consuming the sushi jello for a week now but did miss one dosage one night after a work function where I also (due to others not knowing my situation) went beyond my two beer limit. I'm sad to say I got a hangover from four beers spread out over 5 hours - WHAT IS HAPPENING TO ME?!? Boy, when this is done there will be some heavy training necessary ;)

Always be prepared

DO NOT TAKE THE SHOT WITHOUT HAVING SOMETHING ELSE TO EAT "AT THE READY"!

YUCK!

364 days to go!

...and he has no tastebuds!!!

ewwweueuwwughheuck!!!!

cold - gelatin - sea urchin. it is a jello-shot - you can't 'drink' it - you need to get your tongue in or squeeze it out and then you have to sort of chew it. It's not thaaaat bad but it's not what I would normally taste for breakfast. Only 364.5 days to go!!!

There is a god....

The 'product' is the size of a Jello shot, not a cup of Jello - down two in the morning and start your day - who needs coffee?!?
Pictured here (with a quarter to give you an idea of the size) is my morning jolt. So I take two of these (and don't call the doctor till after 28 days) every morning and every evening. They're kept frozen and you need to take out 4 each night. Luckily my folks have space in their freezer so I can keep the second box there.
The lady that delivered the 'product' was giving me tips, "I'm told that it doesn't taste that good so if you pinch your nose like this "" when taking it may help." I told her I lived in Hong Kong and she said, "oh, then you're used to smells like this." Honest - I can't make this stuff up!
On my last visit I had a bone marrow biopsy, turned in my 24-hour urine test, had a full skeletal xray and did the various bloodwork. I also needed to have an HIV test (required for the clinical trial). The biopsy showed a presence of 60-70% plasma cells (compared w/ the initial of 30-40%) but all other work came up negative (the disease having no impact on my body at this time.) I've sent the reports off to my other doc for his comments and will update accordingly. The other good news is I have to do another 24-hour urine test and will have to repeat that every 28 days. The only other times I've peed in a bottle was during those long car rides after a rugby game - but this one I have to save!
Now on to the sushi-shots! For details, check out this link to the company that makes this lovely concoction. So here are the details:
Supplement Facts
Serving Size 1 Unit (0.6 fl oz)
Servings per container 56 (remember, I get two boxes)
Proprietary Blend 20ml
Sea Cucumber 80%
Sargassum (whole plant) 5%
Sea Sponge 5%
Shark Fin 5%
Sea Urchin 5%
(Daily Value not established)
So I'm imagining this has got to be one tasty treat! But I'll update with another post

Seafood Jello Mix

So I've confirmed with the doctor's at St Vincent's. I go in 4/21to sign all the necessary paperwork and begin the Sea Cucumber Protocol (I'm sure there is a more official name but that will do for now.) All this starts with another 24 hour urine test - this time they gave me two bottles! I'll then get another bone marrow biopsy and a litany of other tests taking place that day. And I should be getting my first supply of Seafood Jello! Unless of course, they are looking to see the test results first.

We temporarily interrupt this program for...SUSHI!

Ok - so everything's changed - but that's a good thing!

Upon my first visit to St. Vincent's the doctors there evaluated everything that was done prior and developed additional questions that they believed may be relevant. My iron seemed to be low; is there internal bleeding causing the iron deficiency and low red blood cell count; I have additions to my 17p chromosome rather than deletions; etc. They considered me "asymptomatic" (the myeloma, though present, is not causing damage or other problems that would normally be present) and were suggesting that we consider monitoring rather than moving forward with the RVD. This came about AFTER my last post. I discussed with DFCI and they talked with SV and I had another visit Wed, 4/8. The general thought process was I was stable and we shoudl consider NOT going on the RVD regimen at this time - and then my blood work came back with a slight increase in the IgA levels (the protein that is causing all this mess), an increase in my Total Protein count and most importantly a spike, for the first time, in my calcium levels. This is of concern in that if the myeloma is "eating away" at the bone's themselves (one of the symptoms of active myeloma) then the calcium from the bone would be released into the bloodstream. However, there could be other reasons for an increase in calcium levels.

I was instructed to lay off my multi-vitamin, stop the VitD intake (supplemental) and stay away from dairy products and have another blood test on Friday, 4/10. When I arrived for that blood test I was informed I would be having labs (bloodwork) as well as treatment. When I asked "what treatment" I was told chemo - which of course put me in a tailspin - I had gotten no phone call, WTF was going on?!? Bottom line, if my calcium levels were still elevated they were going to put me on Zometa (a bisphosphonate bone strengthener). That was the treatment they were going to perform. Well, this caught me slightly off-guard as I couldn't get that answer until I was in the treatment room. And when they do labs, if you're having treatment they can't take blood from your arm, they need to do it from your hand (which is good as the same lady had left a beautiful blue bruise on my arm from Wed.) It wasn't painful but it was bizarre.

So, rather than typing out everything that occurred, I've just cut/paste the email I sent out to family as it describes my next steps and explains the sushi comment above - thank god I love Japnese food!

I went to St Vincent’s today for a follow up blood test. They were testing specifically for calcium and total protein as my visit on Wed had a spike in both and that was the first time my calcium level had risen (a flag as it could mean that the MM is now starting to infiltrate the bone and the calcium is being generated by the degeneration of the bone). Bottom line, my calcium level dropped back to normal and my protein dropped as well. If the calcium level had not dropped below 10.5 (it was 10.7 compared to 10.0 today) then they would have immediately put me on the Zometa (bisphosphonate, a bone strengthener). Since it dropped to 10 there was no concern.

Dr. Jagannath’s opinion is that I am asymptomatic (not showing any negative effects of the MM). He is suggesting there is no immediate need to begin the RVD regimen (chemo) at this time. They currently have a clinical trial they are implementing, more details on that below. I traded emails with Dr Richardson at DFCI and he’s in agreement with Dr. Jagannath with the caveat that we are on a conservative leash – should any of the numbers start spiking we go immediately on the RVD regimen (which is what Dr Jagannath stated.) Additionally, Dr Richardson asked that I get on the Zometa as a precautionary measure (which Dr Jagannath had also suggested).

The clinical trial they are implementing involves an extract of Sea Cucumber, Sea Sponge, Sea Urchin, Shark’s Fin and a sea plant (all from the Pacific Ocean). Apparently this extract has been around for years but never officially studied. Dr Jagannath has two patients that have been using it (with good results) so they’re implementing an initial protocol with 20 patients to see if the results are such that they justify a full fledged clinical trial (multiple locations, many more patients, placebo’s, etc.) Apparently the extract has been successful in fighting back the MM disease so they’re studying the effects in the same way they’ve studied Green Tea and Vitamin C. Additionally, the protocol will start with another bone marrow biopsy which will just give us another, more detailed look, at where I stand currently (and can compare against the base-line reading done early October.) The study is a year in length and involves my taking (orally) two units of this “Sea Goo” each morning and evening. A unit is about the size of a small jello container (and apparently you slurp this up like jello as well – but I’m guessing this only comes in sushi flavor and not grape or cherry!) I will have tests run each month to monitor the impact of the extract and will need to avoid supplements that may counteract and/or impact the extract (Vit D, Vit C, Green Tea, etc.)

Bottom line, results of everything are good! I still have MM but I’m stable and not being impacted by the disease. The protocol they are implementing will either a) do nothing or b) have good results in that it pushes back the disease from where it is today. The other advantage of the protocol is that I will be monitored from a clinical perspective so my numbers, etc will be watched closely as they are trying to monitor the effects of this extract on my disease. Should, at any point, the numbers start moving in the wrong direction I will be dropped from the protocol and will start on the RVD.

What’s also great about this, if it works, then I’m not having any strange drugs in my system and I won’t be impacted by this pain in the arse disease come August (and the Beach House!) Lorri also weighed in and agrees with the consensus.

So – on to the sushi platter!!! I’m reaching out to St. Vincent’s tomorrow to schedule my first visit to sign the necessary paper work and schedule the initial tests and biopsy. I’ve yet to find out how this impacts my ability to play rugby (guessing that story is still the same) and my ability to consume that fabled mother’s milk (Guinness – also guessing I’m limited to my 1.5 pints/week.)

Sorry for the drawn out email but wanted to get everyone a quick update on where things stand. Let’s hope the power of the Sea Cucumber works well – I may get out of this without becoming bald!

The Next Steps

So now's when the fun starts!

Met today with the folks at St. Vincent's. Where I will be looking for direction from Dana Farber it looks like I will be doing the implementation at St. Vincent's. They confirmed what we already knew and we discussed next steps which could start as soon as 2-3 weeks.
The Process: RVD - Revlamid, Velcade and Dexomethazone (sp?) for four cycles is what's being initially outlined. A Cycle is basically a month. Revlamid is an off-shoot of Thalidomide (the sedative that was originally given to women w/ morning sickness only to cause births of children without appendages - sorry - that was kind of gross). Bottom line, Revlamid, in conjunction with Velcade are very useful in pushing back the issue I'm facing, Myeloma, and work better than Thalidomide due to a chromosomal make up of mine (17p apparently is abnormal). In addition to this Dexomethazone (a steroid) is used and the three drug cocktail will purportedly push down my plasma cell myeloma levels to a degree where harvesting would be optimal. The intention is to kill as much as possible (w/o killing me of course) so that my t-cells can then be harvested resulting in a collection that has as little of the damaging antibodies as possible. This cocktail will help achieve that reduction and they expect this to last approximately 4 cycles (4 months). Side effects of these drugs are minimal - worst piece is 'neuropathy' or loss of feeling in fingers and toes - this can be controlled and drug amounts reduced to make sure this is temporary. Beyond that the steroids are supposed to keep me extremely energetic (and will potentially make me gain extra weight - let's hope those Perfect Pushups and Pullups are being actively pursued!) Only other aspect in which we need to worry is the revlamid - this is derived from Thalidomide - there can be absolutely no potential for pregnancy during this time as results will only be bad. Nuff said (and we're not looking for anything further!)
Harvesting: This process can take as many as 6 days and they will attempt to harvest for at least two, potentially three transplants ("...and if you act now...we'll throw in another harvesting at no extra charge!") This will involve me having a catheter in my neck for the 6 day time frame, visiting St Vincent's for approximately 2 hours per day while they give me something to "rev up the t-cells" and then extract. All of this is out patient.
Transplant: The transplant process (currently only considering transplant with my own cells) is also outpatient. But this is where the C word fits in it's true form. Prior to the transplant they will hit me with melafan (sp?) at an extremely high dosage that will essentially eliminate everything left in my body remotely resembling myeloma. On day one they will transplant with my own cells (which we had previously harvested and placed gingerly in the freezer's ice cube trays). I believe this process will be a few days for the transplant and about 10-14 days for my body to be back up and functional. Add about a month and half more and I should have a full head (of hopefully not red) hair to boot! Again, all of this is out patient
The benefit of the transplant, versus continuing on the cocktail and keeping a level of remission, is that the cocktail will only work for so long (like having just the right number of tequila shots where you've drunk yourself sober!) The transplant should give me the ability to go off the drugs completely and live some semblance of a normal life. We will always have to watch for it to recur but the potential is that I shouldn't have to worry about it for 1-3 years. We may be looking at a potential tandem transplant (a second transplant happening w/in one year of the first) but only if something is recurring. So all said in done, I could be in that position in about 6 months. Unfortunately, I don't know if that means I can have rugby in the spring (next spring) but we'll play that by ear.
"Alo" transplants - my brother is really the only one that has a reasonable chance for a match (and it's only 25%). However, some of you have mentioned potentially being tested and there is a registry (I'll have to get a link) and you're more than welcome to put yourself on the list. The chances of it matching with me are about as good as my scoring a try (in any season!) but there may be someone else out there that you don't know that could benefit - I'll leave that decision to you!
So that's all I have for you now - I should be getting my Revlamid soon and then the fun starts, expect it to start in the next three weeks. I've still limited my alcohol intake to the requisite 2-3 units per week (and boy they taste wonderful!). I can't wait till touch rugby starts and till I can have four beers in a row!
Thanks for reading!

The Obvious

In Case you haven't gotten the basic message here...if you haven't had a general physical in the last 2 years (or in some of your cases, 10 years) then get your ass to a doctor - get over the "moooonnnn river" - and get it done!

I caught this before anything serious has really happened. It's sh*tty news but I caught it early. I know people that haven't caught this until they were in a middle of a marathon and two of their vertabrae compressed and he fell like a brick (a brick in massive pain!) Better to learn what's going on now than wait till something happens and then find out it's a truckload more serious than you thought.

Go to the doctor - EVERY YEAR! Tell 'em I sent you!

Telling Friends

Ok - I've been dealing with this since late-October and have yet to really move forward on anything. I feel like I'm moving in the right direction now, having decided to work w/ Dr. Richardson/DFCI. But until now, I've only spoken w/ family, key people at work and a few, long-distance friends. This weekend, over beers and a friendly card game, I told the immediate rugby family, "I've got bad news and I've got worse news...."

Which brings up one of the tough parts (and the purpose of this space): how do you tell people and how do you explain everything.

You balance the decision to tell with the "telling" you'll have to do afterwards explaining all details as if you are the expert (even though you're just learning most of these things now.) It's not that you don't want to tell but when is the right time, how do you start the conversation and what reaction will they have? Playing cards, having beers, break in the game, break out the vodka red bull and have at it. Perfect opportunity - kind of changed the mood of the night though! But I don't remember much after the vodka (that had a splash of red bull!) Bottom line, you don't want to email someone - in some cases you can only say it over the phone - in some cases you're introducing this after "how were your hols?" There's no good time to break this kind of news and I think most people get it. But then you have to explain - and that just gets tough.

Let's take a step back - at this point I've got nothing wrong with me. Yes, I have cancer and yes it's NOT good but it's not actually doing anything to me yet. I still have to do something but at least it's not causing problems. So a lot of my talk, compared to somone that's already gone thru their transplant, done the chemo thing, etc.; is whiney piddlesh*t! That said - everyone starts somewhere. This is my way of saying, "this site is going to do a better job explaining what I'm going through, what's happened and what are the next steps."

So the bad news was I'm not playing rugby this season - and to me that's a beyotch! I'm not really worried about the disease. I know I'm going to fight it and that I'll be fine - can't say it's as strong as knowing I was going to have 1 boy and 1 girl but I'll take what I can get. But rugby was the one thing that actually kept me active, fit (i should put that in quotes) and young. Taking that away is a pain. I know plenty of people that have retired at the ripe old age of 38 or younger. But I played with a gentleman in Hong Kong who was 66 and I said then, "that's what I want to be doing!" Who knows - it's a good goal!

And so you want to help - can you find a cure for this? That would be a great help! But seriously, if you want to help, let me know. I don't have anything but when I know there's something you can help with I will definitely give you a ring. Beyond that, my family network helped identify doctors, hospitals, etc. At this point I just need to get on with this and get rid of it! I don't know how you can help beyond one thing:

Don't treat me any different - I'm still me. I can't drink as much (if you call 1.5 pints a week even a drink!) but that doesn't mean I can't live vicariously through you! At some point I will be a wreck - then don't come near me if you have a cold or some type of nasty illness. Till then, talking, laughing, joking about this mess is the best medicine.

I need to crash now - I've read this and re-wrote it once - not going to bother doing it again so if I've said something to offend it wasn't intended.

As for help - I would like everyone's help - I just don't know how you can help right now. Thoughts are good, prayers are fine - fruit cake...let's send it around as a test for 6 degrees of separation - how long before it reurns to you? Seriously though, there's nothing you can do. Should a need arise and you can fill that need, bottom line, you'll be called. Otherwise, all I can ask is to realize I haven't changed - will be putting up w/ a lot of sh*t over the next year or so but haven't changed - meaning, don't treat me different. I can't play rugby, and that's killing me. I can't drink more than 3 units of alcohol a week (1.5 pints mate - 1.5 pints!) and that's killing me. I'm not on oxygen, I'm not in a wheelchair, I'm still me and just want friends there and things as normal as they can be for this juncture in time.

Again, I apologize if I sound like a whiner/whinger/mr pissypants! I'm not like that but the whole concept of telling people is a double edged sword. I'm not holding out as I don't want to tell YOU - it's the whole process of telling that's a pain. But that concept has now been talked to its fullest. Many thanks for listening and cheers for now.

Timeline

The following is a rough timeline of what happend and when.
9/4/08 - annual physical (Dr. Morledge) w/ bloodwork - identified total protein level of 9.2. Doc proceeded to ask if I was taking any supplements, am I having any bone pains, etc. This blood spike (and the recurring spike as we move forward) was the first identifier that something was going on. The protein spike ended up as being an MGUS (monoclonal gammapothy of undefined significance).
9/24/08 - repeat blood work - total protein level 9.0
9/24/08 - frantic call to family doc (Dr. Ayers) who opened up a wealth of knowledge and details from a friend's (a very educated friend's) perspective.
10/2/08 - referral to Hem/Onc (Dr. Spaccavento) - bloodwork identified protein level of 9.4
10/6/08 - 24 hour urine test - no protein present, nothing alarming.
10/11/08 - skeletal study (x-ray) done - nothing of specific pertinence reported
10/21/08 - bone marrow biopsy done (Dr. Spaccavento) - general take - 30-40% of plasma cells identifying as plasma cell myeloma or multiple myeloma
10/21/08 - start the calls to family - the "network" gets started and I've got contacts at all the major health/cancer centers worldwide - gotta love the network!
11/24/08 - Cornell Weill - Dr Niesvizky - consultation
12/15/08 - Sloan Kettering - Dr Hassoun - consultation
12/16/08 - PetCT scan done at Lenox Hill Radiology - nothing specific identified in report
1/12/09 - Dana Farber Cancer Institute - Dr Richardson - consultation

• identified increasing anemia rate
• identified chromosomal issues w/ 17, 13 (not brought up by anyone else)
• noted potential thinning of bone in sacrum and wanted to evaluate node on thyroid to identify if that may be causing any bone thinning.
• suggested protocol at DFCI but can't participate due to distance
• recommended starting RVD (Revlamid, Velcaid and Dexomethozone) off protocol.
• want to check w/ Dr Jagganath (St Vincents) to see if he has a protocol in place using RVD as a backbone. Setting appt w/ Dr Jagganath.

1/21/09 Meet w/ Dr Spaccavento - need to schedule MRI (look at spine, pelvic region and saacrum). Also got scrip for bone strengthener (bisphosphonate). Not yet started that process.
1/23/09 Pneumovax vaccine (protect against pneumonia I believe)
1/24/09 Pnuemovax vaccine kicked my proverbial *ss. "the following side effects may occur..." - they all did!
3/9/09 Met w/ staff at St Vincent's - initial visit, outlined time frame for starting the RVD regimen. Expect process to start in 2-3 weeks.
3/12/09 Call from St Vincent's re; lab results. Levels weren't crazy and they found discrepancies in some of the paperwork (additions to 17p chromosome, not deletions, low iron levels, etc.) and they want to investigate before making a decision. Spoke to Docs at DFCI, still of the opinion that something exists, set another meeting with St Vincent's.
4/8/09 Tests at St Vincents - most levels are normal, spike in protein and first spike in calcium levels. Recheck on 4/10 to consider going on Zometa.
4/10/09 protein back down, calcium in normal limits - consider new protocol being implemented at St Vincents.
4/21/09 Appt at St Vincent's to sign protocol/clinical trial paperwork and have initial baseline tests done: biopsy, 24-hour urine, skeletal xray, bloodwork, etc. Based on these tests I'll be able to start the protocol.
5/5/09 Got first package of TBL-12, the 'product'. Tomorrow I begin taking the sushi-shots!
6/2/09 first month review, bloodwork, check posting from 6/3/09 for details.
7/15/09 First time getting Zometa - bone strengthener - hit me like a truck!
8/10/09 DFCI follow up visit and IGA counts hit 4k for first time.
9/21/09 SVCCC follow up visit and IGA counts hit 4k again
10/19/09 follow up visit at SVCCC - although IGA was down to 3.8k TotProtein and Calcium both spiked - moving to an RVD regime

10/30/09 Begin Cycle1 of Revlimid, Velcade and Dexamethazone.

11/20/09 Begin Cycle2 of RVD - massive drop in IGA and Lambda numbers - into normal as of Cycle2

12/11/09 Begin Cycle3 of RVD

1/1/10 Begin Cycle4 - only VD this time in prep for harvesting

1/29/10 Start of harvesting - take Cytoxan

2/3/10 Neupogen injections begin - carry on through 2/7/10

2/5/10 surgery to insert catheter for harvesting

2/8/10 harvesting begins - collect 9mm t-cells in first day (target 10mm). Two days of harvesting total. Also, cold from that weekend develops into a light fever, spend night at SVCCC to get antibiotics and monitor to make sure it doesn't develop into Pneumonia.

2/13/10 hair begins to fall out - finish the job on 2/14/10 with my clippers - now bald!
3/3/10 neuropathy still bothering me (apparently from the Velcade).  Been taking Lyrica, added Nortriptyline and was given a pain med, Delaudid, to assist.
3/8/10 Started Maintenance cycles consisting of Rev (25mg)/Dex(20mg), 21 days on, 7 days off.  Got off the Delaudid as soon as possible - making me too ditzy!  Keeping on Lyrica and Nortrip - see posts for details
5/3/10 Started 3rd cycle of maintenance, dropped Dex to 10mg.  Still having PN issues but no longer pain (more numbness)