ALL & MDS

Hello to everyone in this very special club where all members are leukemia patients.
I was initially diagnosed with leukemia while serving with the US State Department in Lagos, Nigeria. That was a wake-up call to get me stateside for further testing. At Johns Hopkins hospital (JHH) in Baltimore, Maryland I was introduced to the 'painful' bone marrow biopsy which deduced that I had ALL and barely weeks to live... Daily trips to JHH for different chemos knocked me into an emergency state because the last chemo (Asparaganase) totally obliterated the leukemia. Those dead cells totally backed-up my kidneys and I had dialysis for a couple days, became delirious, and nonresponsive. So the Drs induced a medical coma where I lingered for five weeks. I had eight hospital stays at JHH during 2005 for numerous cancer treatment sessions including fungal pneumonia and infections (dropped body weight from 210 to 170 lbs). All-in-all, I can be thankful to all JHH Dr and nursing staffs for contending with me during that time.
Once it was decided that I was truly in remission from ALL I was introduced to Gleevec ($3,650 per month for 30 pills)... I could only handle 400mg pills at night with supper; never made it to 600mg as desired. I've never been so overwhelmed and put-out with a very necessary cancer maintenance drug before. Yes, this wonder drug does keep the Philadelphia chromosome from roaring its' ugly head but the side effects, well, I exhibit them all: anemia; weight gain; and depression.
The anemia was initially treated with blood transfusions very very often. Then after getting insurance approval I was permitted to get the weekly, then biweekly, then triweekly ARANASP injections (they cost $5,000 per shot...) that make the body create red blood cells instead of relying on transfusions.
The weight gain was never settled but it ballooned up to 255 lbs and I hate it. Alongwith the depression I just don't have the umph to wanna do anything. So I mostly sit in my recliner and read my Bible, exotic car mags, log cabin mags, and boating mags with exaggerated Lotto pipedreams!
Depression has had me on a myriad of pills but at last Lexipro 20mg and Klonipin (anti-seizure/panic attack) gives me some sort of well-being.
I started driving again 1.5 years ago to offset the burden of family doing it. The neuropathy in my lower legs and feet really keeps me attune to the speedo because I can't feel the gas pedal!
Late last year my blood counts started getting awry. Mind you, they never really were up to par anymore anyway. And, to keep patients from having to endure too many bone marrow biopsies they developed a FISH test (yes, another acronym, but this is a molecular blood study over a couple weeks that gives them some idea of the bone marrow status). Had to endure three more bone marrow biopsies in two months for them to resolve that I did have early myelo displastic syndrome (MDS); a precursor to leukemia again...
Although my chief physician remained within the purview of my status I was transferred to the oncology transplant and research study department. The treatment I was about to receive is the same that's given to CML patients, namely K562/GM-CSF vaccine injections. K562 was developed by JHH and is extremely doable for treating CML.
Four injections are placed at four lymph node areas, i.e. 1 at top of right thigh, 2 at top of left thigh, 3&4 at top of either shoulder (two inches apart). Sounds a bit much huh! Well, it used to be nine sites!
The sites are pretreated with a numbing creme for one hour. By then the vaccine has thawed out. The injection is placed in then sideways so the vaccine creates a bubble. A bandaid follows. The entire treatment is repeated every three weeks (called a cycle) and four cycles are completed. This is followed by two months reprieve but never leaving out blood work...
Yesterday was the end of the two months and I received a four site vaccine booster.
Now for the goodies! Each site festers... and blow-up to the size of a dime (sorry, forgot what to equate that to for you all), gets real hot then very very itchy. Then I get flu-like symptoms for about 3-4 days where my head, bones and joints ache and a general malaise wipes me out too.
Two days after the first cycle the site that festered the worst gets a skin biopsy (it's pre-numbed) alongwith the shoulder that didn't get anything. On Thursday I get the skin biopsies. In one month it's another bone marrow biopsy.
And, if all is deemed okay, then I'm considered done with K562 for at least two years.
But these last 3.5 years have taken their toll on me physically and mentally and this family's newfound burden, 'me,' which they won't admit to. So I may be addressing a full (sibling or registry) or half-match (parent or child) transplant if my bone marrow has settled down.
But knowing that I've to knockout my immune system again by enduring those damn chemos again is not sitting very well with me. Although I could just take my Gleevec and grin-and-bear it but I know my original leukemia will eventually reoccur.
So, in weighing a transplant and 'possibly' eradicating my leukemia or just sticking with what I've got I have a few factors that weigh heavily here... I was put on disability retirement and remain there now and truly miss my career; I'll be 60 (Yikes) this year; etc.
And finally, if it wasn't for my military retirement and its extensive medical insurance alongwith JHHs excellent care I wouldn't be here now. We just had to pay for hospital stays that exceeded set limits.
I hope that this 'short story!' was able to help somone. The best of health to all and may God bless. Rick