Sibs,
LOTS of news from Tuesday’s chemotherapy session, which included results and education from the research team. I’ll summarize in this first paragraph to avoid keeping you in too much suspense as you endure what is a LONG message: Both good news and bad news. The good news is strategic, long-term stuff; the bad news is (mostly) short term tactical stuff. The net result is it was a VERY GOOD DAY… well except for the two extra injections, added respiratory therapy inhalation routine, the infusion itself, and the resumption of all these drugs in Cycle 2 of chemotherapy. 😉
I’ll divide this into some digestible chunks… yesterday Irene (she went with me, thankfully) and I were clearly into information overload by the end of the visit. You will be too by the end of this message.
BONE MARROW BIOPSY ANALYSIS:
Most people have a plasma concentration of 5% or less in their bones, because healthy bones make good plasma, the amount you need, and pass good plasma into your blood stream. My bone marrow has a 40% plasma concentration, because the Myeloma is creating defective plasma that cannot pass to my bloodstream. Untreated, the cancer increases this percentage until the bones become “full”, the bones themselves become brittle and very easily broken, many lesions occur as the defective plasma tries to “get out” of the bone, the bloodstream stops receiving good plasma. The researchers are not surprised at this 40% number and say I should not be alarmed. Many myeloma sufferers are at 90%. This number will decline with successful treatment, and will drop and climb between remission and flare-up for the rest of my life.
WHITE and RED BLOOD COUNTS DECLINE:
My white and red blood cell counts dropped from previous weeks – not surprising because this is an anticipated (though unwelcome) side effect of chemotherapy. My white cells have fallen very low – from 2.6 (normal) to 1.6 to .6. At .5 they discontinue chemotherapy.. .so I was very close to cut-off. To combat this I received two injections of blood cell stimulating drugs (I think the same stuff Janet self injects, but probably in massive doses). The researchers tell us this is to be expected and is no cause for immediate alarm unless a downward spiral continues and the countermeasures are ineffective (which they do not anticipate will be the case). HOWEVER, at this deeply immune-suppressed state I am “grounded”. No visiting the grandkids this weekend, no crowds, no mixing with people with any kind of infections, no public activities like movies, restaurants, air travel. I have masks to wear for any brief public trips in which I encounter “the great unwashed”.
LIVER COUNTS DOUBLED:
The opposite of blood cell counts, my liver counts have climbed to double my previous numbers. This is also to be expected and is a result of the liver on overload processing all the unnatural fluids coursing through my body. They’re watching this, not alarmed, these are temporary liver problems and not permanent liver damage.
DNA SEQUENCE ANALYSIS, NO DEFECTS:
Two characteristics of Myeloma sufferers is that they carry genetic traits that inhibit disease recovery. These defects add to the required number of chemotherapy cycles (remember I only just started Cycle 2) and shorten the time between remission and re-occurrence of the disease (some have remission intervals of only a few months, whereas sufferers without these DNA defects can have remission intervals of a year of more). Those two genetic traits are: lacking the DNA string normally found at DNA sequence 13 (it’s just not there!); and a reversal of the strings at DNA sequence 4 and 14 ( what should be at 4 is at 14, and vice versa). I have NEITHER of these deficiencies – a very good bit of news. Keep in mind – this is not a predictor of one’s susceptibility for GETTING the disease in the first place (which they say probably began with an event in me 2 years ago) but your ability to fight and overcome the disease once you have it. Since there is absolutely nothing they can do to correct DNA defects like this, not having them is a huge bonus. Thank you, mom and dad!
DRUG REGIMINE CHANGES:
Two changes in drugs based on early results and side effects.
First, to avoid the rash (my torso looked like a cherry tomato) I encountered last week – which they have declared to be an allergic reaction – we have dropped the thrice-a-week Bactrim pills and replaced them with a monthly, 8 minute long, respiratory therapy prescription inhalation. This will be scheduled into my regular clinic infusion visits for the next 12 months. This is the anti pneumonia component of side effect prevention.
Second, my daily self-administered pokeymon injection of Lovenox (LOVEnox, a sex drug? NOT!) has been replaced by a daily dose of good-old, regular 81 mg aspirin pills. I will not miss pokeymon. This is the anti blood clot component of side effect prevention.
All other chemo drugs and chemo-cancelling side effect drugs are the same dose and frequency.
PROTEIN COUNT IMPROVEMENTS:
In a phone call from the clinic today with lab updates, I learned that my IGG Protein counts (do not ask for more specifics than that) have improved dramatically with only the first cycle of chemotherapy. Normal people have IGG protein levels less than 1500 (lower is better with IGG); my initial counts were over 7000; my latest count is down to just under 2000. This is also a very good bit of news.
CHANGE TO PROJECTED GRADUATION FROM CHEMOTHERAPY to BONE MARROW TRANSPLANT/STEM CELL RECOVERY:
More from the update phone call from the clinic today… If you have been paying attention, you may recall that the experimental study’s calendar projects 8 chemotherapy cycles of three weeks each = 24 total weeks, with expected October/November for transplant (IF transplant happens, more on this later). Today, based on early strong results, they slashed my chemo time from 8 cycles to 4-6 cycles (from 24 weeks to as few as 12 weeks to 18 weeks). This is still tentative, but they have already referred me to the Transplant Clinic (separate from the Oncology Clinic – whole new group of people) who should call within the next day or two to schedule our preliminary consult and get me on their busy calendar for the transplant/recovery process. This could happen as early as late July, probably August/September. Expect a 10 -12 day hospital stay.This is a huge deal!
MAJOR DIFFICULT DECISION – SELF-HARVESTED BONE MARROW OR DONATED BONE MARROW?
Finally (after all the other info overload) the researcher left as with “something to start thinking about”.
Initially, we must make a decision to undergo transplant/recovery or not. To decide NOT, my chemo results would have to be so wildly successful and place me so far into remission that transplant/recovery would offer no additional medical benefit. This could happen; it is unlikely.
Second, after deciding to undergo transplant/recovery, from whom do I get it? This is NOT an easy one.
– Self-harvested cells guarantee no rejection problems and no chances of acquiring new diseases or deficiencies. The biggest downside – the only thing it does guarantee is placing me into remission. No chance of that tantalizing word “cure”.
– Donated cells offer a slim, remote chance of that word “cure” – but very slim and very remote. A crap shoot. What the risk carries with it is a lifetime of anti-rejection drugs and the possibilities of other side effects, and the list of those side effects [diseases] is very long and very spooky. If the crap shoot fails, I can be no further ahead than in simple self-harvested remission, and for listed reasons, probably a long way behind.
I may have explained this in a way that sounds like a slam-dunk decision. It is not. We will receive input from the transplant team (whose business it is to do transplants) and the Myeloma Clinic Oncology team (whose business it is to cure cancers). As a final “more food for thought”, the researcher reminded us that this field of medicine is changing almost daily, and the latest research suggests doing BOTH, a self -harvested first followed by a donated transplant/recovery. [best of both worlds of worst of both?] This will obviously be a wait-to-the-last-minute decision.
= = = =
Sorry for the length. I did not know another way to give you all the info without conveying this much detail. In general, we are very encouraged by all that has transpired and doing a Happy Dance in Hamburg. I am still feeling very good through the chemotherapy, minimal side effects, none of the “bad” side effects, and optimistic of an early, positive outcome.
-larry