Dana Farber Study on MM Cancer Inhibitor

This is an interesting story - still years from being offered but it seems like extremely great news.  Also reminds me to read these monthly emails I get from DFCI!

Read Story Here

Breast Cancer

Thank you to Sandy for her comment on my last post.  As my post occurred on a holiday (in the States) weekend, I forget that people might not see my blog till later in the week or it might get crushed with all the other updates people get.  So to Sandy's point, a little more color, but first, apologies for the reiteration, but here's the details I posted previously.


(repeat from prior post - new information below)


My cousin was recently diagnosed with breast cancer, has had a tumor removed and is now facing chemotherapy. And is scared shitless!
She's 54, the tumor was about 3cm, upon removal they were able to identify trace amounts of the cancer in the lymph nodes. She's scheduled to get TC in four cycles (I believe). But she's scared of the chemotherapy and not thinking of what could happen if she didn't get the chemo. On a scale of 1-50 she's a score of 23, so about halfway. She has cancelled one appointment and I've not yet heard if she's gotten a second yet. In prep for her first round they had her on dexamethazone and failed to warn her of the effects. She took it at 1630 and was on the phone with me flipping out at 0230. Had she known what to expect she could have been prepped for a "speedy" night but not knowing, her only focus was the chemo and what could go wrong. She ended up canceling her appointment the next day.

Now this blog has been mostly about MM but being scared of chemo knows no borders - just some chemo is more of an annoyance than others. What I'm looking for is examples, feedback or words of wisdom I can pass back to my cousin. Whether it be about chemo, breast cancer or anything else relevant, please post a comment so I can pass them along to her. Any help would be greatly appreciated.


(more details)


Sandy brought up a point that my cousin may be in denial (most definitely) while also being scared of the drugs, their effect, etc.  She can't take tylenol/codeine without feeling like she's on a 70's acid trip.  But again, I think that's being more scared than anything else.  Regarding Sandy's comment about getting online and taking control - well that's a bit of a problem as, until 2 weeks ago, she didn't have an email address.  She's sent me one email (the night the Dex hit her!) and she's not yet responded - most likely due to the fact she doesn't know how!  She does have a son and daughter that can assist with email but I need to call her to get her more info.  Regarding family, her sister is a nurse (oncology I believe) so she has resources but she follows the clan with her stubbornness!  At some point she'll read this and probably hate me but I'm hoping the information I get from my blog readers is such that she'll thank me in the long run!


If you have any feedback (Sandy, thanks for the start) I'd much appreciate it.  Please leave a comment and let me know.  Again, thanks for reading!


Bill

Vacation, Retraction And Assistance Desired

It's the last day of vacation and all my peeps in Belfair are asking for an update or at least some sort of post as it's been so long. I have nothing in particular to say, as I try and navigate this Star Trek keyboard on my new iPad, but do need to cover three things. First is I need some assistance from all my readers.

My cousin was recently diagnosed with breast cancer, has had a tumor removed and is now facing chemotherapy. And is scared shitless!
She's 54, the tumor was about 3cm, upon removal they were able to identify trace amounts of the cancer in the lymph nodes. She's scheduled to get TC in four cycles (I believe). But she's scared of the chemotherapy and not thinking of what could happen if she didn't get the chemo. On a scale of 1-50 she's a score of 23, so about halfway. She has cancelled one appointment and I've not yet heard if she's gotten a second yet. In prep for her first round they had her on dexamethazone and failed to warn her of the effects. She took it at 1630 and was on the phone with me flipping out at 0230. Had she known what to expect she could have been prepped for a "speedy" night but not knowing, her only focus was the chemo and what could go wrong. She ended up canceling her appointment the next day.

Now this blog has been mostly about MM but being scared of chemo knows no borders - just some chemo is more of an annoyance than others. What I'm looking for is examples, feedback or words of wisdom I can pass back to my cousin. Whether it be about chemo, breast cancer or anything else relevant, please post a comment so I can pass them along to her. Any help would be greatly appreciated.

Regarding my retraction, on Mothers Day I wrote a lengthy diatribe about my Aunt and her reaction to mothers day with us. She promptly told me that what I had written was not correct. While her mother (my grandmother) was alive she usually coordinated the mothers day festivities but after her passing she was taken out by her husband and boys. Her remark to my mother was simply saying thanks as she was so welcomed on that special day. I can only add that it was our pleasure. Family is too important for not getting together when possible and keeping in touch always!

Speaking of family, were finishing up a week with my folks and my brothers family as well. It's great to see the kids together and "Story Time" at night with Nana. The kids were in golf camp all week so the parents got "sanity time" to relax, hit the outlets, or workout. And each set of parents got a day off as well - my wife and I got massages and a day together while my brother headed locally for a night in Sanctuary! All in all it was a greet week and ends tonight with a big 4th BBQ at the club. No real fireworks but thats fine. Unfortunately we leave at 0800 tomorrow and are back at work on Wednesday. So we'll need to chalk this up as another great memory and hope our batteries are recharged enough to last till the next vacation!

So for now, thanks for reading and please get back to me (comment) regarding breast cancer, chemo, etc so i can pass this along to my cousin!


- Posted using BlogPress from my iPad

Life Of A Blog Writer and His Family

I started my blog after I found out I was diagnosed with Multiple Myeloma in October of 2008. Having a blog allows you to jot down your thoughts and not have to worry about whether or not you included all the right people in the email.  Having said that, there's a certain responsibility with a blog - to keep it updated.  I'm not a journalist or a writer (though, at times, I have had the odd post that has garnered a compliment) so I don't have to deal with that journalistic integrity crap!  But I know I have readers - some I know, and many I don't.  My original purpose was to put everything down on 'paper' so that i've thought it through but mostly so I don't have to tell my mother the story over and over (unfortunately, that result has yet to be achieved.)

If I was keeping a blog on tech then not knowing when the new iPhone was being released would diminish my respectability as a tech blogger.  If I was writing about world peace (something I know nothing about) then, again, I wouldn't be keeping up with the times and keeping my readers involved or aware of my vast knowledge of the subject, especially these days.  But when you have a blog related to a disease like cancer, not updating your blog raises the first question that nobody wants to ask..., "is he still alive?"  Luckily, I've tried to update my posts with the actual fact - I'm alive, i'm in complete remission (touch wood) and doing well.  But don't say anything for a few months and the same question comes to mind.  Unfortunately, you can't help but ask it.

At first, and even now to an extent, it is difficult to follow a blog of a cancer patient.  You get close, very quickly and if something were to occur, your thoughts turn immediately to yourself. And that's scared the living sht out of me at times.  I feel I'm somewhat over that and, as Dr J told me, it's time to get on with life.  You've gotten control over this miserable mess, do your monthly, keep yourself fit and get on with life.  And now I'm back in the regular work swing, I have my monthly bloodwork and Rev maintenance; my quarterly local checkups; and my bi-annual checkups with DFCI.  Those are just a few hours or days and, unlike when I was taking my frozen sushi or going through chemo or losing my hair - there just aren't as many good stories to tell.  And frankly, there's just not enough time in the day, especially with a 7.5 and 4 year old (and cub scouts, dance recitals, etc.)  So now it's late on a Saturday and while jogging this morning I had this idea that I needed to explain this to everyone (or anyone that's willing to have read this far!)

I am doing fine - and I find myself quite lucky for that fact.  But then I turn to others that are having a tougher go at this, I really count my lucky stars - as well as turn my prayers to them.  For those that have gone down this same path, creating a blog to document this pain in the "bone" (sorry, really bad MM joke), remember to add a note here and there to let everyone know you're still kicking some MM Butt!

Now - a complete switch in topics - Mothers!  If you've not spoken to your mother in a few months stop reading this and call your mother - or at least send her an email!  I'm a bit late with this post, with mother's day a few weeks behind us, but it is something I need to say.  Every family is dysfunctional - that's what the F in family stands for (dysFunctional!)  I grew up with a grandfather that feuded with his brother and, until Facebook, an entire branch of the family tree is missing!  His brother's name is on the moon for Christ's sake (he was proud enough to tell us that but still wouldn't talk to him!)  And for this to fester and grow through the generations is just miserable.  All of us have read stories about families, immigration, where you came from, etc. - that connection to the past helps define the present.  I've been trolling through my parents attic getting pictures from years gone past and trying to understand who all these people are and seeing them in a completely different light.  My only memories of my one grandfather were playing gin rummy while he smoked his Marlboro Reds and stuck his dentures out so I'd miss a trick.  Now I have pictures of him in uniform holding my mother at an age 2 years prior to my daughters current age.  You start to see parts of life that helped create who you are today.

Now I'm focusing on all aspects of the family but I started this diatribe with mother's in particular.  On this most recent Mother's Day I was lucky enough to have my Aunt present as well (and it was my son's first communion weekend as well).  Her first comment was, "I don't want to be in the way for your big day."  My only response was, "huh?"  This is family, and you only get one of those - for good  or for bad.  Having her present allowed my kids to see a different aspect of our family, and where I'm sure they didn't pick up on it now, it will be a memory they will have, and  respect, years later.  I show my son pictures from when I was his age and ask him to smile so he can show his kids similar pictures and have similar memories and thoughts (and not that smirky fake smile!)  So my Aunt was included in our festivities and she was overwhelmed with grandkids galore (not having any of her own.)  To my surprise, I was told later that she had never gone out for Mother's Day dinner.  WTF?!?  Sure, my mother is a pain in the ass (love ya mom!) but it's mothers day - if she's near, you better damn well have breakfast or brunch (or suffer weeks of misery!)  It was something that amazed me; but brought up the fact that too many people seem to get it in their head that how they feel, right now, is more important than the fact that blood is thicker than water - these people are the only family you have, think of the big picture.   It's bad to let distant family grow too separate.  But immediate family is too important.  If you're in town, you better damn well let me know or I will be pissed!  I will make time to see you, as I remember when you changed my diapers!!!

I joined Facebook after I left Asia as it was the only way to keep in touch with an expat audience who had a temporary email address (once they moved, the @netvigator.com address was a bounceback).  I was able to keep in touch with a group of friends near and dear to me.  Now that's spread to put me in touch with family I've never even met!  My father was amazed that I send a Christmas card each year to his cousin.  I've never met her but her father's name is on the moon for Christ's sake!  That's cool!  And we're related!  Better yet, I saw a picture of her grandson, who is 8 and is taking TaeKwonDo, just like my son!  I want him to know this boy and maybe one day trade stories about family and what each remember so they can compare notes and make fun of their parents.

We have a bizarre occurrence in our family that rivals Kevin Bacon's six degrees of separation.  It seems (just like my grandmother used to find) that we somehow know everyone and have some sort of connection.  But when it's a connection through family that makes it even stronger.  In scanning these attic photos I came across one with kids in their Sunday best but the year identified in the photo didn't fit with the people or who I thought they were.  After realizing this, I found out it was actually family I'd never met, but who's son (whom I had met, in Scotland, once) I share a birthday (my cousin).  I then got an email from his father saying he remembered that day (and he was the second from the left in the picture) and that they could only afford the photographer if three families got their pictures done at the same time.   You can't make this stuff up - and it's family.

So enough from me - go call/write/email your mother - NOW!

(I know, I had this same rant about friends so feel free to call them as well!)

bill

The Maintenance Continues - All Is Well!

I can't even remember what month of maintenance Rev I just finished.  Bottom line, all is still good.  I was a month late but went in for my Zometa today.  I'm not sure if it was the Zometa (doubt it) or the 11 hour days at the office and 3 hours more at home that knocked me out for the rest of the day today.  I came home and passed out.  Now I'm hoping that doesn't keep me up all night tonite!

So the good news is everything is looking peachy and I've got nothing bad to report.  The bad news is between work and kids I have no time to update so apologies to those that have been wondering if anything is going on.  Trust that if something WERE to occur, I would be updating immediately (if for nothing more than to get my mother off my back!)  And speaking of motherly segue's - here's a question that "a friend of hers" asked (those quotes are the ones you make over your head w/ your fingers to imply sarcasm!): what's the difference between a PetCT, CAT scan and an MRI.  Well Google has done it again.  I will completely plagiarize the source but I will also give a link and full credit in advance.  But I think this is a fairly good lay-person's description of the tools.

(thank you to springboard4health.com and their article linked here.)
January 19, 2000

CT Scan, MRI and PET Scans…What are the differences?
CT, MRI and PET scans are all diagnostic tools to non-invasively (non-surgically) look inside the body. They are all based on the fact that certain things happen to atoms in our bodies when they absorb energy. Resonance refers to the level of absorption achieved by adjusting the frequency of the radiation and the strength of the magnetic field – like tuning a radio to a particular station. 

CT (computerized tomography) uses a sophisticated X ray machine combined with a computer to create a detailed picture of the body’s tissues and structure. Usually a special dye called a contrast material will be injected prior to the scan. This makes it easier to see abnormal tissue due to specific absorption rates. 

Nuclear magnetic resonance is produced by measuring the magnetism of spinning electrons and protons and their interactions with nearby atoms (usually protons) when they absorb energy. This provides information about the chemical structure of organic molecules. The use of the word “nuclear” has recently been avoided and Magnetic Resonance Imaging (MRI) is now preferred. MRI uses a magnetic field from super-cooled magnets and can often distinguish more accurately between healthy and diseased tissue. A contrast agent is usually used. MRI can provide pictures from various angles and construct a three dimensional image. Some patients who have received certain types of surgical clips, metallic fragments, cardiac monitors or pacemakers cannot receive this type of scan. 

Positron Emission Tomography (PET) scans measure emissions from positron-emitting molecules. Because many useful, common elements have positron emitting forms (carbon, nitrogen, and oxygen), valuable functional information can be obtained. This is the main difference between the CT and MRI scans. The PET shows molecular function and activity not structure, and therefore can often differentiate between normal and abnormal (cancerous / tumor) or live versus dead tissue. Like SPECT (single photon emission tomography), PET also can product three dimensional images, and is usually used to compliment rather than replace the information obtained from CT or MRI scans. 

Ode to a Jets Fan (my wife)

I've been to a variety of sporting events in a large number of places around the world.  I sat in awe in Wembley during the five nations (it was still the Five Nations as Italy hadn't grown enough yet to join), two hours before kickoff, listening to the songs being sung by 10's of thousands.  I've been to cricket matches, NFL games, hockey, baseball, etc.  But I'm not sure if I can say I've ever found a more superstitious fan than a Jets fan.

Tonight, the Jets played the Patriots (New York/New England (Boston) for those over seas) in American football (the NFL or 'Gridiron' in Oz).   The Patriots have been a stellar team this year, spanking the Jets on the last outing.  And the Jets have this amazing history (sans the last 2 years) of being a woulda, shoulda, coulda team, offering moments of brilliance followed by eons of agony.  But this year (potentially two years) the tide has changed - but that doesn't change the fan!

My sister-in-law has a history of getting Christmas presents of a Jets jersey.  The year she gets the jersey from her favorite player he either becomes injured or is traded away the next season. We have friends that have to watch the game from certain locations (not just the home in which the watch, not the TV upon which they view the spectacle, but down to the chair in the house where they MUST sit to view the game.)  My wife believes she must be in the kitchen cooking in order for the Jets to win.  Which means the rest of us get to watch the game as well as be fed, but she cannot view the TV more than the time it takes to bring the food to the table or the buffet.

On my last post I mentioned the cold that comes around goes around.  Well, my wife got hit with this nasty bugger this week and has been miserable.  An ugly chest cold where on Thursday she just didn't sleep (nor did I get much either).  Friday I went out and got her some cough medicine but it didn't much help.  And she was too sick to teach church school today.  That being said, IF SHE'S NOT COOKING, THE JETS WON'T WIN!  So she invited a few families, including kids, over for the game and she cooked.  And cooked, and cooked, and then cleaned.   She watched the final 1:24 seconds (when the game was essentially won) but was missing the rest of the entire match.  All this while barely being able to speak due to her throat being so raw!  Six bottles of wine, just a few (8) bottles of beer, and a half bottle of grappa (my recommendation upon the end of the game) later my wife had drank nothing but water but served tortellini, salad, faux fried (baked) chicken, and sauteed asparagus.  Along with dessert, etc.  I was responsible for cleaning approximately 7 forks, a serving knife and taking out the recycling (which will hopefully gain the respect of the porters in our building with all our bottles - The McHugh's always throw a good bash!), my wife did the rest!

Although the comment was made that Rex Ryan threw out a thank you to Lillian for hosting the party that helped make the decision, it was quite funny throughout the night.  K was not allowed to NOT drink white wine - the minute she switched to seltzer things started looking bad.  When D got up and started drinking wine he was ordered to get a beer and sit back on the couch.  My wife was recommended to return to the kitchen multiple times.  One of the mothers of British descent (who doesn't much care for NFL and arrived late) was almost asked to go back home.  And one of the kids was made to stand at the end of the TV with his hands up and fingers crossed for much of the game.

But through it all, my wife was the stalwart, cooking, cleaning and making everyone happy behind the scenes.  I wasn't allowed to leave my seat (and luckily my switch to an IPA was met w/ a fumble and turn-over to the Jets or I would have had to drink that nasty French wine I put out!)  The only concern I have was the graphic that came up on the television, after the Jets had won, announcing that the Jets would next play on Sunday, 1830, against the Pittsburgh Steelers, to which one of the fathers replied, "So we'll see you around 1730 next Sunday?"

J-E-T-S -- Jets, Jets, Jets!

What goes around, comes around, again and again!

On the 19th of December I started getting miserably sick thanks to my young daughter and her pretension to sleep in our bed, while sick, and then cough directly into my sleeping face!  I still lover her miserably!  I started a z-pack on 20th Dec when I got a small fever.  On Wed the 22nd I had a fever of about 101.8 and went to see my friends at Mt Sinai.  All was fine but I was given Avelox, that wonder drug that I was given during my stay for the harvest that looked neon green, similar to Prestone anti-freeze.  This time it was in oral form, 10 days, quit after 5 if you're ok, just make sure no less than 5.  So I went the entire 10 days - to be safe.

It's now the 14th of January, and I feel the code coming back full strength.  I'm taking my VitC and doing the listerine and nose rinse to keep things neat and tidy and try to fight this back.  Unfortunately, my wife has been hit hard, similar to me the last time, but I can't blame it on her.  You see, my daughter, who still has the same cough/cold she had 7 days prior to the first time I was sick, snuck into our bed on Tuesday last.  And in the middle of the night, while snuggling close, SHE PROCEEDED TO COUGH DIRECTLY IN MY FACE!  But I still love her miserably!!!

I was in Boston the week prior.  Met with the Docs at Dana Farber.  The good news is that on our next visit they will have all new digs and a much comfier/cozier waiting room.  The bad news is I won't have as much time to write such glowing bloggery as I did that day!  On a serious note, though I haven't gotten the actual numbers back yet, everything looked great.  A few quick notes that may be good reference to others that are in a remission:
* I'm on a 10mg Relivmid maintenance, 21 day son, 7 days off.  I will continue this for the foreseeable future.  The original thought was to potentially ween off the drugs altogether but I don't see that in the near term.
* I've been asked to maintain regular treatments of Zometa (bisphosphonate) at every three months.  There has been a recent study that shows newly diagnosed Myeloma patients have a greater "overall survival" (OS) and "progression free survival" (PS) rate when on a regular routine of zoledronic acid (Zometa).  If you've not been given this advice and were recently diagnosed, take a look at the study and ask your doctor
* Annual skeletal study and PetCT exam.  Now insurance here in the States needs to approve the PetCT but the goal is to look for lytic bone lesions (xray) and anything else that may be forming that wouldn't be caught in in an xray (thus, the PetCT).  That's scheduled, for the first time, at Mt Sinai next Wednesday.  No food/drink four hours prior to the study and then a beautiful barium cocktail just in time to sit in a donut and listen to bizarre noises!  But I'd rather know than not!
* continue my cycles, monthly bloodwork, and regular checkups!

So for now, all is good and I'm pleased to make that statement.  On a different note, one of my colleagues is working on his MBA and needed to do a study on online advertising.  So currently, my blog is being advertised when you do a search for Myeloma and a variety of other keywords.   So if you see my blog listed on one of those "sponsored links" it's all in the name of edumication!  Thanks all for reading and hope to have more fun updates in the very near future!

Hotel Review

We recently went to Disney with the kids. I've always been a big fan of the house of mouse as service is top of the line. Well today I headed up to Boston to see the Docs at DFCI for my six-month check-up. On a prior visit we had stayed at the Westin Copley and the stay was extremely mediocre - I felt like we were staying for a convention.

This visit we stayed at Fifteen Beacon, downtown, near Beacon Hill. Upon arrival they were wonderful. When mentioning I needed to get to DFCI they offered the hotel car. They set us up w free wifi, got us dinner ressies and offered us a double upgrade (for the price of a single.) Fireplace in the room, "boutiquey" and hip decor, the place was a real find and worth the price. I highly recommend if you're looking for a place in Boston that's in the center but a little more relaxed and less "conventioneer" feeling!

But in the same vein, good friends can offer a similar experience. I got a bizarre email from a friend I hadn't spoken to in years yesterday. I responded jokingly that he had been hacked and someone had spammed his address book as he'd never be capable of such a heartfelt message! He immediately called me!

He had been through a rough patch recently with a bunch of back to back medical procedures and had been doped up pretty well. Unfortunately he probably liked that part too much and when he finally had to come down it was a long way down! He dropped into a funk and closed himself off from the world for quite awhile. The recent "spam" was his debutante announcement, entering back into the real world.

We chatted today and it was just another reminder of how friends are friends, no matter how distant. You may not speak for years but when you do, it's as if you had spoken only yesterday. Don't ever forget this fact - it's an irrefutable fact of life. It's also one of those things that can get you through those tough times.

I've been very lucky during my ordeal in that I've avoided the black hole of depression and "why me" that could have embraced me. I can't say exactly why except that I have family that loves and supports me (and puts up with me) as well as friends that all have a glass half full (with another pint in waiting.)

I have had my trials and tribulations in the blogosphere. When first starting this blog I was trying to find a picture of the catheter that would be used in the harvesting procedure. I found a perfect shot and prior to publishing I wanted to get permission from the blogs owner. Not being able to find an email for the author, I went to the most recent update. Only to find out the author had died three months prior. That was my first view into that black hole and I shut it down immediately! For that reason, I didn't pay attention to other blogs (my mistake) as the thought of getting to "know" someone that may not be there in the immediate future opened up that door to the void again.

Well f_ck that! Friends are friends, whether they're personal or blog-linked, and I need to remember that and ask that everyone else do the same. Life's too short to not enjoy friends, family and a good hotel!

Now go shoot an email to a friend or family member you haven't spoken to in awhile. You'll feel better having made the effort and if you're scared to do so...comment here and I'll send them a message!


- Posted using BlogPress from my iPhone

A Turkey Ate My Homework!

Ok - so it's been a long time since I've posted and I apologize.  From a MM standpoint I'm the same: in CR and my numbers are still going well.  I will begin my 10th cycle of maintenance Rev (15mg) soon.  I was supposed to start it last Monday but issues w/ renewing the prescrip w/ CVS, etc. caused me not to get the 'scrip till yesterday.  Now the debate is whether to start today or tomorrow or wait and start on Monday to get back on my regular schedule.  There's a few things to consider:
a) Rev is known to cause constipation - today is 25 November - that could be an issue.
b) If I start on a Thurs I need to have my bloodwork done and scrip renewed by Wed in order to receive the next dose on a Thurs for the next cycle.
c) If I postpone till Monday then my cycle has been 21 on and 14 off.

I'm opting for c) as I believe it gives me the best option to get back in the regular swing of things.

Now the original reason for this post was to simply say (to those in the US) Happy Thanksgiving!!!  For those outside of the States - Happy...Day!  Hope you have some turkey!

Think about what you're thankful for and be happy!  I'm thankful for my kids (who want everything shown on every commercial for Christmas), my wife (who puts up with me in numerous ways), my Mom and Dad (one who wears the rose colored glasses and the other who balances the rose!), my relatives, my friends, the people reading this blog, and of course the docs, nurses and everyone else that's gotten me to a wonderful place in the midst of this mess of a disease.  I've got a lot to be thankful for and am going to do my best to pass those thanks on!

Best wishes to everyone out there fighting this fight!  I hope everyone has the opportunity to be as thankful as I am!  Happy Thanksgiving!  Go eat some turkey!!!

Bill

Not Much To Update

Well there's not much to say - and that's actually good.  I'm finishing up Cycle 7 of my maintenance chemo of 15mg rev and I've gotten off everything else.  No more Lyrica, no more Nortriptylene.  I think the Lyrica (the last to go) was actually causing the weight issues I was facing.  Since stopping I've dropped about 7 pounds.  I'm getting up early and doing my best to knock out a few pushups and situps but I can't really say I'm "working out" but I'll take it for now.  Unfortunately, I can't play rugby (our Old Boys are into their 2nd match of the season and I've not been able to get out for one) so my effort to get fit (so I can embarrass myself on the pitch) is even gone!   But I'll get there.

I'm considered to be in a complete remission now.  The maintenance won't go away, but will decrease dosage at the end of the year and continue on as needed (slowly weaning off the teat of Revlimid).  I now see Mt Sinai every month (for bloodwork) but the doc every three.  I'm at DFCI every six months, just to keep them in the loop on how I'm doing.  I'm taking Zometa for protection, every three months though there has been some debate between the two doctors about how often that should be done.

So now life is getting back to normal and I consider myself lucky.  My son (7) has started his soccer (football) season and I was elected coach - rather, school marm.  I send out the emails, try to get everyone there on time, get the kids to kick the ball back and forth to each other until the real coach shows up and puts them into drills!  Now I get the biggest challenge of my life - explaining the concept of good sportsmanship to your seven year old!  Funny that daddy's stories of rugby don't quite cut it ("just because we lost 65-nil we didn't storm off the field upset, rather we went to the pub and got cracking drunk together")  I'm thinking of bringing juice boxes so that we can pass out drinks to the other team after the match but I'm not quite sure it will have the same effect as a nice pint or two.

Beyond that, work is extremely busy and the market here in the City sure is tough.  There are many people I know looking for work.  I consider myself luck to be busy and have a job - too many people I know that don't have either.

Off to Mt Sinai tomorrow to get the blood checked, confirm my numbers and get my Rev renewal.  Hopefully I won't be so long between postings next time.  Cheers...

In the end...

I arrived at 11:05
I am done and departing at 15:49

What a mess!


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Help me ObiWanKenobi

I just overheard the receptionist, "I have Mr McHugh standing here and I don't have his chart or any orders" "yes. No, no I don't see it. What, he brought it over? Oh wait, here it is. You're absolutely right. I've got it." "MR MCHUGH?"

Now were going on a tour of the treatment areas, nope, no seat there. Not there either. Oh look that seats taken as well. Why don't you wait here NY the scale as I try to find somewhere to out you.

God I miss my boutique!


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Macy's One Day Sale! I hate Macy's

So my first experience with getting treatment at Mt Sinai is like a Macy's One Day Sale (thank you DO for the Macy's analogy).

I have an 1130 appt and I'm there, labs already done, at 1125. At 1235 I said forget this, let's get my Zometa treatment done first since DrJ was behind schedule. I asked if I needed my paperwork to go over to the treatment area and they said, no just give your name.

Of course when I got there three people asked for my piece of paper!!! Then they couldn't find my chart - that's because it was still over at the Dr's area. Rather than wait, I went and got the chart.

Now it's sitting in a file sorter, initially alone, and now pushed behind by 6 other charts.

I hate "Macy's". I miss my boutique!


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How Do You Track Your Bloodwork?

I'm not sure how many of you are as anal about tracking your bloodwork as I am but I've at least 4 inches of folder containing the various copies of bloodwork and charted results of the numerous tests that I've taken over the past two years.  Right from the beginning (as I am almost at my two year anniversary of wondering WTF a protein spike is) I've been tracking my bloodwork in an excel spreadsheet.  At first I wasn't sure what all the numbers meant but as I've gone along, I've started to get a base understanding of what each means and how it impacts my condition or what it helps identify.

When my friend came down with acute-AML, I started talking about numbers, results, platelets,  RBC, Hemo/Hemato, etc.  He looked at me in wonder and asked how I knew all this.  I told him that within four weeks he would be speaking a language he had never thought of before.  And I was right!

So for those of you wondering what to do with your reams of paper, I am happy to pass along the spreadsheet I am using to help track my data.  I originally did this in excel and then migrated to excel for Mac (lovin it!)  There is a bit of work required to update the charts but it's usually just cut/paste or extending the time the chart covers.  Bottom line, I can help get you setup but you would need to learn a bit of excel to maintain!

Some screen shots with captions below explaining each:

This is a grab of the entry form.  I've set this up to mimic the report I get from the hospital so that the data entry is simple. I've got a script written to copy the data so I can easily paste into the actual database.

The main database simply pastes the data coming from the entry form into the next row.  The hi/low ranges are maintained and the value changes red for hi and blue for low.  This database is the source for the charts and is an easy record for each value in the event you want to look back historically.

I have a few "base" charts that maintain two representative values, show me hi/low ranges and simply chart how I'm doing.  These need to be updated with each entry to include the new date but other than that, it's simple to maintain.

My main chart calls out to the database to get values on two different data points and then charts them for the time frame, shows percentage change for each value and represents the hi/low range within the chart.

If anyone would like a copy of the file, please post a comment with your email address and I'll get back to you as quickly as possible.  I would need one or two sets of results to setup the database for your needs.  Alternatively, I can just send you a blank spreadsheet and you can run with it on your own.  Just let me know.  When I first started all this I was amazed how little there was available to me.  The IMF website has a program (that's not compatible w/ Mac) but their hi/low ranges were always different and the charting ability was limited.  I don't want to dismiss what they've built but I found it easier to create my own.

As I've just had to update this for my move from StV's to MtS, I thought it would be a good time to put this out there for anyone interested.

I'm happy to help where I can.  Best of luck to all and if anyone has their own example of this, please let me know!

Cheers....

Ode to St Vincent's

I've spoken to a few people re; the closing of St Vincent's CCC for MM patients and the migration to MtS.  Where everyone is aware that MtS is the better hospital and will be much better, long term, for research, treatment, etc., everyone misses StV's.   As an entry to this miserable disease, and having seen a few other institutions in advance of going to StV's, this was a wonderful place to go through the treatments, check-ups, and what not.  From the moment you arrived, they knew who you were, what you were scheduled to do and where you were supposed to go.  And though I've waited there at times, it was never a truly miserable experience.  I have even shown up on a Sunday to drop of two liter bottles of 'samples' to a couple of nurses in the treatment area not quite knowing what to do with these.

Now on to Mt Sinai - it's HUGE.  The building I'm in covers two square blocks and is affiliated with the other 6 or so blocks of hospitals around it.  I've not yet been for bloodwork where I wasn't 11th in line in the queue.  To get to the MM section (Ruttenberg clinic) you have to walk through the treatment center (hereafter to be referred to as Grand Central).  Now granted, they're new there - so none of the computer stuff is up and running correctly so there's going to be a bit of confusion.  But it's still a bit tough to get your arms around when you were used to something so completely different.

My buddy the nurse put it more precisely, "StV's was a boutique...now you're at Macy's."  Well my mother should like that! :)

by for now

Back and At It!

Vacation is definitely over.  Now I need a week to recover from my first two weeks back at work.  I'm finishing the last week of my 6th maintenance cycle of Rev.  All is well and having no issues (aside from the fact that I am too lazy to get up and work out!)

A special thanks to all the reader's down South.  It was great to meet so many people that are reading the blog.  Now, based on my Son's recent experience down there for golf camp, how much is she paying you to say that!?!  In all seriousness, it was great to meet and talk with each of you and thanks, as always for reading.

I have bloodwork being pulled next Tuesday and I believe I'm on target to see Dr J the first week of Sept.  I don't expect anything crazy but I will be hoping to get off the Lyrica leaving the only real "drug" being the Rev.

Thanks again to all!

A Long Overdue Update

It has been weeks since my last post.  All is going well.  I had two back-to-back visits at Dana Farber and Mt Sinai (formerly St Vincent's) and bloodwork only at DFCI.  Bottom line, my numbers are in line and I've been able to back down on some of my meds.  I don't want to repeat myself (and haven't previewed my prior post so am not sure if I am repeating myself but here goes), but I've dropped the Nortriptylene altogether as well as some of the other supplements (alpha lipoic, etc.)  I've reduced the Rev from 25mg to 15mg.

I can start to feel the Nortrip wearing off now.  I've been able to get up and actually do some exercises.  Not as much as I'd like but at least I'm doing them.  I'm still around 206 and want to get back down to 189 if possible.  Additionally, I'm only seeing the doc every three months but still doing bloodwork every month (to get the Rev scrip).  Also, I have a very special friend at the hospital which is a huge advantage.  One of the NP's from StV's used to be in myeloma and moved to solid tumors.  When the change took place she followed Dr J and is back in MM and is helping me out LOADS!

So, as promised, I'm going to try and post some before and after pictures (yes, the hair is all back, it's come back full force, and a bit more curly than I would have wanted.  I'll also try to post a few pics w/ a relatively mild Rev reaction.

So this pic is the "day of".  In the shower, everything started falling out.  Actually, not everything, it really only fell out in two strips off center of the skull.  So I had hair around the ears and on the top (mohawk) but nothing in between.  It was a really bad Bozo look!  After consultation with the wife, I took out the shears and got it down to what you see here.

After a few days, it ALL fell out.  This was not caused by any clipper or razor - this was a "Trim By Cytoxan"!  I took this with my iPhone for posterity.

When I went back on the Rev (the first maintenance cycle) I had a really bad reaction.  This example here is either the second or third cycle.  I have the reaction around the 4th or 5th day of the cycle.  Notice the red patches on the side of the scalp.  If you look closely, you'll see red on the inside of the eye socket, that's the first place it starts.  On my first cycle I was triple this with my eyelids and eye socket swollen along with the skin of my scalp, over the ears, also swollen.  I looked like a really bad Frankenstein!

I'm now back to full growth and, today, actually had to go to the barber as I could no longer handle the trim with my clippers (without it looking like I had handled the trim with my clippers!)

I head to Mt Sinai on Tuesday to have bloodwork and get my numbers.  They're still a bit crazed there with setting things up but at least I'll know where I stand this month.  Thanks to everyone reading this and, as always, any questions, please let me know!

What's next?

Actually, having typed that, I realized it could quickly be misunderstood as a statement of frustration.  That is certainly not the case here.  By "what's next" I simply mean to provide an update to what seems to be my less frequent postings.  As has been lately the case, I offer apologies to those "avid" followers, again, as there hasn't been a recent update to my blog.  The days just seem to escape like a poorly monitored, greased swine!  (going for visuals tonight!)

Having taken a long weekend in Boston (at a beautiful home with gorgeous views and company that too frequently tip the bottle), I had my visit at DFCI which was promptly followed by a visit at my 'new', New York digs: Mt Sinai (I believe the correct name is the Ruttenberg Cancer Center but I will confirm that in a later post).  Bottom line, my numbers remain where they should be.  IGA is normal, IGG/IGM are low but approaching normal.  WBC, Hemo and Hemato are normal where RBC is just below normal.  TotProtein, Globulin and Calcium levels are all good.  I had no m-spike so DFCI now considers me to be in near CR (complete remission) as well.  Having met w/ Dr Jagannath at Mt Sinai after returning from Boston and DFCI, the following are the changes going forward:

• we will drop the Revlimid from 25mg down to 15mg, still 21 days on, 7 days off.  I anticipate this being followed through end of this year while dropping to 10mg (21/7) beginning in 2011.
• we will drop the Dex altogether (yipee!  perhaps this means an end to the c-word?)
• we will drop the Nortriptylene as well while keeping with the Lyrica at 200mg/day for the time being.  I'm anxious to see where this leaves my feet.
• we will drop the Accyclovir as that is really utilized in conjunction with the Velcade and unnecessary in my current state.
• there is still a question with respect to the Zometa - DFCI is recommending once per month where MtS is saying not only is that not recommended but something they would avoid.  Their belief is that this only raises other potential issues due to the compromises it could pose on the bones itself where I have nothing showing any concerns with my bones or lytic lesions that would demonstrate a need for this active a routine.  I've not yet done enough research to say either way so I'll let the two of them chat it out.
• I've also opted to drop out of the other daily meds that I don't believe are having an impact: alpha lipoic acid, acetyl l-carnitine, etc.

So my daily regimen is essentially Rev for 21 days along with Lyrica (100mg 2x), BabyAspirin, VitC, VitD, VitB12 (500mcgr - highly recommend this one for an energy boost to anyone taking some of these other meds), FlaxseedOil, sennacol (during Rev days) and finally, FishOil (highly recommended from the pill poppers in Boston!)  I now need to get myself to bed at a reasonable time and start getting up and back to my exercises.  I was also chastised for not having exercised, which I hope to correct in the very near future.  But part of that means getting to bed at a reasonable time (did I just say that twice, probably because it's 23:26 and I should have been in bed hours ago!)

I'll write more re; where I stand and also post some before/after hair pix.  I also took some pix of my most recent reaction to the Rev.  It wasn't bad but hopefully someone new to the regimen will have a sense of relief that it's not long lasting and Zyrtec will take care of it!  Thanks to Beth Morgan for sending me pix of how her eyes reacted to the Rev, I'll try to think of this as I move forward.  I'll also put something together re; long term thought process as I've spoken to both docs re; that issue and have some sense of what to expect.  But for now, I need to get to bed!

Thanks for reading and I'll talk w/ everyone soon!

To Dex With Love

It's Monday, it's only 8mg of Dex, it's currently 23:58 AND I'M WIDE AWAKE.

More important, my flaxseed oil wasn't as successful as it was last week and I've even taken to a full 16oz glass of prune juice at dinner (and still no success).  But I just realized I haven't even taken my night-time meds and probably need to do that now!  But for those of you awake and bored, I've not much to report beyond my lack of sleep.  Should be a wonder at work tomorrow.  Perhaps I'll get up bright and early and work out (and perhaps I'll win the lottery as well!)

Good night for now!

The Drugs and What to Expect

One of the recurring themes in my posts is getting caught by surprise when something expected doesn't go the way you expected!  Specifically, the drugs you're given and your reactions to them.  I created a page on my site called The Drugs and What to Expect that's outlined my experiences.  I'm hoping that people just getting into this mess find it useful but I'm also looking for feedback for those that have had other effects.  Being I'm using an "off the shelf" blog template I may not be able to do this effectively but at least I can gauge response and determine if I need to do something differently then.

I've not gotten everything in yet but I've tried to capture as much as possible and will continue to fill in when able.  Please provide feedback (and in the case of Beth, pictures!) where possible.    Hopefully this will prove helpful to others as well.  Please also indicate dosages as that may be of relevance (dependent upon age, current bloodwork status, etc.)

I'll leave everyone on a quick tip to combat the C word!  Flaxseed Oil, 10o0mg (or is it mcg)!  It's been the solution!!!  I am also taking "SennaCot" or similar name, which is a mix of Senna and Colace (50mg).  Two of those as night and the Flaxseed Oil during the day and aside from two days this week I've been business as usual! :)

On that note....