Sibs,
Monday marked the end of Chemo Cycle 5 and Tuesday the beginning Cycle 6 – hopefully my last cycle before transplant. As usual, Irene and I met with the Myeloma physician and the research assistant to review my progress and discuss future treatment. Tuesday’s clinic visit turned out to be an all-day affair: Blood work for regular labs (with a defective barbed needle OUCH!), two urine samples, meet with researchers (who were already running late at 10:00am), supplemental blood draw for the research study, an ekg, regular chemo infusion, supplemental 2 hour Pomidrinate infusion for bone strengthening (has to go into the bloodstream slowly or it damages the liver), more take-at-home pills from the pharmacy, and an x-ray of my spine. Long, long day.
In general, previous trends are continuing: my treatment is going well, side effects are more evident with each cycle, and we now have a date for the Bone Marrow Transplant/Stem Cell Recovery.
LAB WORK, BLOOD COUNTS
On Tuesday my white cell counts and ANC levels had declined – and although still within normal limits, were below where Dr. J’s standing orders call for a Neupogen (white blood cell drug) boost. BUT – the infusion nurses did not catch that detail and we had a voice mail upon arriving home saying we needed another injection (didn’t they poke me enough today already?). Not sure where/when that will happen… I have Neupogen syringes in the refrigerator, maybe I can do it with a self-injection.
SIDE EFFECTS
After 5 chemo cycles, the side effects continue to become more noticeable and more difficult to ignore. The two most troublesome are the “numbness and tingling in the extremities” and the pain in my right hip/pelvis. Despite the gallant claim in my previous Chemo Update Email about avoiding any pain medication, those days are over and I now have a new pill to pop for the hand/feet pain. Lyrica, 50 mg, initially twice per day but already increased to 3 times, a neuropathy drug and not a narcotic, seems to be helping.
You may recall that in Chemo Update #3 I talked about pain in my right hip/pelvis, and that an x-ray and MRI were ordered to assist in isolating the problem. In Chemo Update #4 I reported that both tests were negative. So here in Chemo Update #5 I can report that Dr. J ordered _another_ MRI, this one of my spine with a contrast agent, and this test indicates that the lesion on my spine at L3 has increased slightly in size and that there seems to be some compression of the interstitial space between L3 and L4. Dr. J has referred me to a radiology spine specialist who may insert a needle, which carries a balloon, which he inflates with some form of “cement” to spread the distance between the two vertebrae. This spine-expanding procedure has been around for a long time, is well-established as a permanent solution… but it is done on an out-patient basis {egads!!}. Stay tuned…
(NOTE: despite my good response to chemotherapy in general, the increase in size of this L3 lesion suggests it is somehow chemo-resistant. Future treatment for this bad boy may involve radiation therapy)
BONE MARROW TRANSPLANT
All blood match results are in, and the final results contradict the preliminary results reported in Chemo Update #5. Two siblings (Laura and Micki) were perfect matches – 10 out of 10 indicators; and two (Dave and Mary) did not match. Keep in mind that this experimental study calls for a tandem transplant – the first is always autologous (self) and the second is either autologous or allogeneic (donor). We still have not decided upon that second autologous/allogeneic transplant, and will not until measuring success of the first autologous transplant. But, with two matching donors, we at least know we have that option.
We have a tentative transplant date of September 24th. Unlike a hotel where you have a guaranteed room, a BMT reservation is dependent on the previous patient getting discharged and the absence of another patient in critical condition whom the doctors decide must be slotted in ahead of you. No expedia.com guarantee at this place! 😉
– If we can hit that date I should be back home, immune-recovered, {probably still bald ;-( }, but able to freely mix with relatives by Christmas. That’s an important milestone for me.
– If we don’t hit that date I will have to endure another Chemo Cycle (#7) for no medical reason but waiting for bed availability. I will be sad…
The transplant process includes an intense week (bone marrow biopsy, ekg, 4 hour infusion with 12 hour observation, blood work, echocardiogram, pulmonary function test, more…) of pre-admission procedures and tests, all done on an outpatient basis but requiring lots of time. The actual transplant is 2 – 3 weeks of hospitalization in a sterile room, followed by 2 – 3 months of recovery involving initially 3 per week, then 2 per week, then once per week visits to the transplant clinic for checkups. I will very likely be out of work on disability during this entire time; Irene will apply for a family medical leave to be home with me until my recovery is well-along. This transplant is NOT something I look forward to; after hearing details of the pre-transplant week, it look forward to that even less.
(UNEXPECTED EDUCATION: When patients undergoing radiation and chemotherapy, you hear that it reduces and sometimes destroys [as in my case during transplant] the patient’s immune system. A destroyed immune system means you start over – from scratch!! – including long-ago childhood immunizations like polio, measles, mumps, chicken pox. Unfortunately, your immune system will not be strong enough to create the immunities (without giving you the disease) for a full year. The patient must be careful about exposure to those diseases (think: grandchildren) until inoculation a year after transplant. Weird, huh?)
That’s the latest news from Hamburg,
-larry