Saturday, January 30, 2010

Pschyo-so-what?!?

When you're taking a week off between medications then you are sort of used to what you're getting. I was able to handle 40mg of Dex and did even better with 20mg of Dex (last two cycles of treatment). Yesterday I received 10mg of Dex - at 03:30 I was well aware of that point! I finally fell asleep around 0400. Second, "potential side effects are nauseau,..." So all night I had heartburn/upset stomach - no porcelain god trips luckily - but part of me thinks it was the 4 portions of Chinese food followed by HFSundae and part of me is thinking"...potential side effects are nausea...." Bottom line, I am fine - had some cereal this am and am working on my second pint of Gatorade. At some point I need to get some additional sleep but will sort that out later! So is it psychosomatic or what?

For now - I need to voice a concern - as some of you who have been reading my know, my friend was diagnosed with AML, a version of Leukemia. First, he's doing well and potentially may be able to get out of this without a bone marrow transfer. Second, he found his sister was a match should the BMT be needed. Third, he hosted an event at Cornerstone Tavern (a friend of ours pub in Manhattan and highly recommended for those looking for a nice pint and some pub grup) to get people to join the bone marrow registry. Along with being a great time, they had over 600 people join the Bone Marrow Registry. For those that couldn't attend but still want to put themselves on the registry for a match it would be near and dear to both mine and Kieran's hearts. Get details here.

So Kieran's got some good karma working for him and the results are starting to show. First, during my treatment I didn't think to take a picture of my room as it really wasn't much and I wanted to be in the chair anyways. But when I asked for a snack the little sandwiches they brought back were quite nice. See picture here:


Later on that evening I received an email from K telling me he had moved rooms and sent me a picture. Looking at this, I'm guessing that his menu selection is slightly more, 'diverse' than mine. Additionally, if I'd had a room like this I probably wouldn't have wanted the chair! This picture reminds me of Matilda Hospital in Hongkers! Keep up the Karma K!


Friday, January 29, 2010

All is good so far!

Sorry for not posting an update earlier. I'm fine (yes Mom, I'm fine!)

I survived the chemo - 2 hours of hydration, an hour of drugs and two more hours of hydration. Part of the chemo was Dex, and as I predicted...i fell asleep! What a bizarre sleep - kept dreaming the wife was talking w/ the kids when I realized it was nurses dealing w/ patients! I did ask for a snack after I got the chemo (and before I fell asleep) and they were able to get me a 1/2 tuna sandwich, 1/2 a vegetable wrap, a V8 and a grape juice - doesn't sound like much but I was starved and it was great.

I didn't get to eat anything else till dinner (which was a wonderful selection of leftover Chinese food!). I will say that I ate like an absolute porker! And of course, now I feel like an absolute porker!!! I probably shouldn't have followed it with a hot fudge sundae but I was told eat whatever you want, even if it's not healthy! And the boy passed his belt test in TaeKwonDo so we HAD to celebrate. It was good but I definitely didn't need it!

So things to watch for going forward: blood in the urine and hydration. If I do get nauseous they'll get me something for it. I'm also told the Neupogen (starts next Wed) will cause bone pain. I had likened this to what I experienced when I took the Zometa - but this is less muscular and more bone. To the point that the Doc asked what painkillers I have at home; he seemed upset to hear I didn't have anything stronger than Tylenol. He did offer to remedy that should the situation reveal itself.

I'll post more this weekend if anything occurs but I'm expecting all to be rather tame!

Thanks for reading.

Aaaand...they're off!

Let the fun begin! I show up at SVCCC today, say, "hello gents" to the guys in reception only to find out I don't have an appointment. Well that's a bit of fly in the ointment. In my best attempt at The Force I simply tell them I DO have an appointment ('these aren't the droids you're looking for') and they call Zach who comes out to assist. Zach is the one who has scheduled all my appointments and is also very receptive to the Force. Last Friday he tried to reschedule my Tues appointment - needless to say I kept my scheduled appt! Apparently Zach had mistakenly cancelled my appointment today. We had a talk with the treatment center and they snuck me in.

Luckily I've got Donna as my nurse once again (the Newfie!). Donna was my nurse for my first chemo treatment - refer back to that post for details. Like that time, Donna asked, "is this your first time?" and I replied, "yes." So now I'm in a room with the red toolkit. For those of you who haven't referred back to the previous post, the red toolkit is there in the event I'm allergic and have some massive reaction to the drugs they're giving me. I'm in a room for the same reason. I hate the bed - I want the chair! You never forget your first time!

I'm receiving Cytoxan today. Here are the details:



I've got two hours of hydration about one hour of chemo (Cytoxan, Dex and Kytril for nausea) and then another two hours of hydration. Did I say I hate the bed?!? I've got my Kindle; Farscape and Logan's Run on the iPhone and a bottle of water. We'll see how things go.

If anything more happens I'll be sure to post.

- Posted using BlogPress from my iPhone

Tuesday, January 12, 2010

Details, details....

So as I meet more people related to the harvesting and read more 'stuff' (ok, only one stuff but I was able to upload it to mine and Mom's Kindle to make for easy reading!); I find that, like any good politician, what I wrote earlier may not be totally correct....

Yes, you guessed it - I did try it but I DID NOT INHALE!

Ok, now that I've gotten that small tidbit out of the way :) I will add modifications, alterations and other finely tuned pieces of material to make sure you all are aware of the intimate details of the process I will be going through. First, for any of you that have ever gone in for a blood test, you may have had the shot in the arm and filled up a tube or two. On my best day I had to fill four. Today, I arrived for treatment and had one tube taken for CBC (blood profile, RBC, Hemo, Hemato, WBC, Platelets, etc.) I was warned that when I return that afternoon they had more for me - and they were NOT joking! I swear, I thought this was the nephew from Caddyshack ordering at the halfway house, "i'll have a hamburger, and a hotdog, and a coca-cola..." This lady just kept pulling out tubes - honest!
Luckily, I, "...have good veins." It didn't prevent me from counting out random numbers while she tried to count the total number of vials in comparison of the total number of labels she had printed. I swear, I almost got kicked out, "7, 3, 12, 26, BINGO!" Apparently they need all these vials to test the overall counts (iga, lambda, etc) in addition to testing the t-cell counts (I believe those are the orange tubes).

Now these are the 'modifications' I've learned thus far (and I reserve the right for future modifications as my level of knowledge (for those of you familiar with the 12 sided die, my skill and resource level) increases).
- it's not a portacath - disregard my wikipedia reference (though that was kind of cool) DO NOT LOOK AT THIS IF YOU'RE FAINT OF HEART - first, it's not me, but it is a real picture! That's going to be messy! (photo credit is due to Thompson Cancer Center and Google search)
- the neupogen injections happen from Wednesday through Sunday - every morning I have to got there to get my shot, including the weekend. Now, if I was daring, I could do these shots myself; simply find a piece of fatty part of your body (ok, so that's not tough right now after the holidays), pinch it between two fingers and place the needle within the fatty part and 'shoot'! Isn't that simple.... Sir, ahhh, sir, are you awake? Someone call a nurse (oh sh!t - I'm home, no nurse!)
- The Cytoxan (given 1/29) takes a week to kick in, which means 8 days later I'll be at a very low WBC count. The White Blood Cells are your immune system - low blood count means boy in the bubble - can you drink Guinness through a bubble? This means we ship the kids off to the Aunt's house for the weekend (don't you love portable germ factories) without all the fun of going out and not having to wake up for the kids the next day. And I may lose my hair - Bruno (the barber), here I come - take it down to the tarmac and smooth it over.... That is a last resort - I don't think I'll make a very good Mr. Clean. But if it goes there, there will be a reflective photo collage - how many things can I reflect off my chrome dome? I'm going for some serious Dali-esque shots!
- The harvesting is pretty much the same as I described earlier. Bring a good book, load up some movies on my iPhone and potentially see if I can get my brother's big screen tv glasses to work! 6 hours in a room, with those tubes, blood coming in and out. I will do my best to describe ALLL the sensations - just like being there. Perhaps I can get James Cameron to do a 3D movie with smellovision (or do you think Dolby THX will be enough?)

The rest of my tests today were fun - I had a sonogram of my heart (it's there and it works and I don't have a baby). I have a new respect for expecting mothers - that stuff is COLD! Next was my breathing tests - including a little glass room which I guess isolates the pressure for when you breathe through the tube - apparently I did well (read as I have a lot of hot air, witnessed by this drivel) Then the radiology department was closed (the light burnt out in the xray machine - reschedule that appt. The vmail was as follows, "Regarding your appointment today, the x-ray machine is broken so please DO NOT SHOW UP FOR YOUR APPOINTMENT TODAY." I don't think she looked at my schedule to see I had seven other appointments that day.) I met with the nutritionist - at the point of harvesting and on day 8 after the Cytoxan, I have to maintain a Neutropenic diet - in other words, food that can have any sort of live bacteria is a no-no. Cheese Whiz is good, Spam is good, burnt steak is good and yes, Mom can make chicken noodle soup but it must be eaten w/in 72 hours of being prepared. Essentially, anything in a can is OK - actually, I'm embelleshing a bit, I can do more but cheeses are bad, fresh fruit must be washed well or peeled - just be cautious! I also met the psychotherapist! She asked if anyone in my family had any history of mental illness or had any psychiatric treatment - my response, "not that my mother's ever admitted to...." Was that the wrong thing to say? "How does this process make you feel?" 'Aside from the bed wetting, I'm pretty much getting used to the idea.' All joking aside, we connected and she has a cousin in Hongkers that I'm going to try and see if anyone knows. I'm all clear on the shrink-front!

So that's it for now. A special thanks to Danny for sending me his message in a bottle, though his response to my last post would have been good fodder for the blog. Something about reading my blog while he was at DFCI getting ready for a radiology treatment. When I mentioned "not RVD but just VD" he apparently laughed out loud and the crowd in the waiting room thought he had laced his Barium! (didn't I mention Danny would laugh at that!?!)

As they say in Bangkok - night, night Mama San!


Saturday, January 2, 2010

Well Ollie, what should we do next?

Twas a few days after New Years and all through the house,
Not a creature was stirring, not even a louse (thank god!)
The kids were at the Aunts and Mom & Dad are a cleaning,
Christmas is put away and it's time to do preening -
Stuffed animals, toys, clothes, and plenty of other stuff,
Either in the bin or out to goodwill - looking around it's still not enough!

But enough about the holidays - we're filled with good cheer and my last doctor visit shows I'm in a form of chemo driven remission - they did use the term CR (complete remission) and I had reached that after Cycle2. Apparently I am ahead of the bell curve (for once in my life I can tell my mother I'm ahead of the bell curve!) with my reaction to the chemo. Based upon these results I'm continuing on Cycle4 but we have removed the Revlimid and I am only getting the Velcade and Dexomethazone (so no RVD, just VD - had to add that so Danny will laugh!)

Revlimid, as I understand what I've been told, will inhibit the production of the t-cells needed for harvest. It's necessary that a full four weeks have past after Rev before the harvesting can take place. Since I've so drastically dropped they expect that my plasma cell penetration, which last was 80% is down to normal numbers (I'm saying 2-5% but I have no idea what the actual percentage, is - what can I stay, I didn't stay at the Holiday Inn Express last night!) So my body is in perfect position for the harvest and using the Rev could potentially make it more difficult to get the good cells I need at time of harvest. So I'm off the Rev for now in prep for the harvesting. Here's where it gets fun....

My schedule as it is thus far (with explanations of all below)
  • 5 Jan, 8 Jan, 12 Jan - Cycle4 continues - VD chemo sessions in morning
  • 12 Jan - after chemo I have a full regimen of pre-harvest tests (day out of the office)
  • 29 Jan - chemo with Cytoxin (below) 5 hours on an iv, prep for harvest (day out of the office)
  • 3 Feb - Neupogen injections (below) to amp up the t-cells
  • 4 or 5 Feb - insertion of a 'portocath' in my neck/chest area (day out of the office)
  • 8 Feb - start harvesting, 6 hours per day in a chair pulling out the good stuff (it's harvest time - in the middle of winter!) (week out of the office)
First, the explanations (with hopefully useful links to Wikipedia for those that truly desire to be that As Seen On TV Doctor).
Cytoxin - the link is to Wikipedia but my understanding is Cytoxin is used to prep for the harvesting and specifically will assist in pushing back the bad proteins and prepping the body for the actual harvest. This is a more rigorous chemo therapy and could cause nausea and hair loss (although that varies from patient to patient, so perhaps I'll get that close haircut just in case! :)
Neupogen - "is a granulocyte colony-stimulating factor (G-CSF) analog used to stimulate the proliferation and differentiation of granulocytes." Ok - did everyone get that? This is like steroids for t-cells and will amp them up so that when the harvesting takes place we're getting the most bang for the buck. No real side effects aside from potential bone pain which will be less than I experienced from the Zometa.
Portacath - This will be my Borg plug!! A catheter, inserted into a vein, in my upper chest area. This will be in for the duration of the harvesting. I need to be careful in the shower to avoid getting the bandaging wet and I need to be careful with the kids as they can't be bangin on daddy's plug!
Harvesting - the allotted time for harvesting is 3-5 days. I'm allowing a week (5 days) as I'm unsure how long the entire process will take. Having said that, the doctors are saying due to my good numbers and current physical health (I have them all fooled: insert evil, world-dominating doctor laugh here) we may be able to get all we need within two days and once counts are confirmed (number of t-cells taken) we'll be able to remove the portacath. I don't expect there will be any side effects, potentially just tired. I also don't expect the harvesting process to have any concerns to my day to day health.

So then...? There are two options: immediate transplant or maintenance chemo and monitoring. The first option will be much more involved and is a more permanent step in trying to reach a more long-term remission. Let me be clear here, there is no cure for my disease, not yet. By doing the transplant I'm killing all the existing cells and then replacing them with what I have harvested. I intend to harvest enough to handle 3-5 transplants if needed. With the transplant they expect I could last a year or so without any chemo, drugs, etc. before the disease resurfaces. This could be longer, it could be shorter, bottom line, it's not permanent. The second option involves me taking the Revlimid 21 days on, 7 days off, for the foreseeable future until some level of toxicity becomes present or it just stops working and the disease resurfaces.

With my reaction to the drugs thus far, option 2 is where we are headed. I've had a great reaction to the drugs and hopefully will be able to keep that up and buy myself a year or so and in the meantime some Doc at DFCI or SVCCC will come up with a cure. At whatever time the drug resurfaces we can then schedule the physical transplant. Till then, I need to call CVS in Lenexa, KS and speak to a pharmacist each month and then call Celgene's 'RevAssist" automated phone survey to confirm, if I am having sex with a woman who still has her womb, that I'm using protection. I also have to confirm I'm not chewing the capsules and, on a serious note, that I'm keeping them away from the kids. One day I'll record the Celgene number and post it as it's quite funny to hear an automated fon voice talk to you about how you're having sex! Apparently I'll still need to have the Dex, but I may be able to take this orally as the Rev is oral as well. So I'll still be on the steroids, reduced amount hopefully, but it's not been that big of an issue thus far. I'll just be happy not having to deal with the twice weekly iv's and mess that goes with it. I will have to go in each month for monitoring.

As an aside, if I were to let this go and just not take anything, they expect the disease would return within months if not weeks.

So I hope that fills everyone in. It's good news, this month will suck with a bunch going on but I'm really pleased with how everything is going and looking forward to getting back to a basic routine and not having to get over to the hospital so often. Everything I've mentioned above is out-patient work so it's easier and less explaining I have to do to the kids!

Stay tuned for more as the saga progresses!