Bowie, MD; email@example.com
3-17-1933 / Class of '98 / Type: IgG Lambda / Died 12-05
7/97 - 12/97. A "bump" on my head kept getting larger and when I went to my family doc with some pain in the kidney area I asked him what he thought of the bump. The pain was from the lower rib and not deemed important (went away in a few days but later seen as a rib lesion) but the bump landed me on a surgeons table to remove a "brain tumor". The 4x5-cm tumor was removed on 12/23/98 and the biopsy showed it to be composed of 100% plasma cells, and thus began my MM trip. The following staging tests yielded IgG = 4000 mg/dl (700-1400 normal range), IgA and IgM suppressed, B2M = 3.8 mg/L (0.6 - 2), BMB = 20% plasma cells in marrow (<5%), Bone Scan - 7-8 additional lesions, creatinine = 1.0 mg/dl (0.1 - 1.6), BUN = 10 mg/dl (8 - 25), Uric Acid = 6.5 mg/dl (4-9), monoclonal bands in serum and urine (lambda) electrophoresis. Conclusion Stage IIA (IIIA if one insists on the > 3 lesions parameter but otherwise good health caused IIA to be accepted). The bone scan also showed a large tumor in the right shoulder (clavical area) which became very painful just prior to starting chemotherapy. The pain completely disappeared within a week of starting chemo.
NOTE TO NEWCOMERS: This is the kind of data you need to characterize the disease and establish a base from which to measure progress. Additionally it's the kind of data the MM list group like to know about in order to provide you our opinions (at least IgX, B2M, lesions, creatinine, presence of M-protein in serum and urine, D-S Stage).
1/98 - 5/98. Five cycles of monthly MP and Aredia with no problems (save for the normal sleep disruption while on Melphalan and the flu like hangover symptoms from the first two Aredia treatments and every time I ceased the prednisone). At this point the IgG was down to 1900 and I stopped MP to explore harvesting stem cells before I further damaged my marrow with alkylating agents.
6/98 - 7/98. Casting around (no treatments) for BMT centers willing to do it "my" way. By late July I settled on the HUTCH. At that point IgG had risen to 2500 and B2M was 2.4.
8/98 - 9/98. Everyone wanted me to do a few cycles of VAD to knock the values down prior to harvest. After researching the potential problems of Vincristine (the V) and Adriamycin (the A - generic doxorubicin) and taking note that several MM experts say that Dexamethasone does 80% of the VAD job I rejected the VAD and underwent 3-14 day cycles of Dexamethasone (40mg/day for 4 days then 10 days off) (some euphoria while on Dex and a really bad, flue like, hangover coming off the Dex, and some leg cramping). At conclusion of that the values were IgG = 600 (below normal range), B2M = 2, no detectable urine protein.
10/98. At the HUTCH they ran a complete set of staging tests. IgG = 538 and serum M-protein = 500 (e.g. the good IgG protein is 538-500 = 38 or essentially zero which gives me a new problem - no IgG protection at all thus very susceptible to any respirators problems – need, perhaps, gamma globulin infusions but how when it is in very short worldwide supply?, B2M = 1.7 (NORMAL!), BMB < 1% plasma cells, CRP (C- reactive protein, a shadow measurement of IL-6) = 0.7 mg/dl (0-0.08), 24 hr. urine protein = trace or none, MRI (their own technique) picked up a few additional small lesions in ribs and sternum and showed mild inhomogeneous marrow density. I rejected their desire to do a Cytoxan cycle and allowed only the G-CSF (Granulocyte-Colony Stimulating Factor = Neupogen@ - generic filgratsim) shots to stimulate the production of stem cells for 5 days. Started apheresis on day 4, processed 12L of blood and got 3.3*10^6/kg of CD34+ cells then 2.2 on day 5 for a total of 5.5 (against the goal of 5 which is enough for two transplants). After two more days to insure that the blood values were returning to normal I was discharged.
11/98 – 2/99. Decided to forego any treatment save for the monthly Aredia IV’s. Unfortunately the IgG rose steadily (11/98 – 990 mg/dl, 12/98 – 1430, 1/99 – 1720, 2/99 – 2280). Decided at this point to try and complete an induction protocol with Dex. My induction protocol had been truncated in my rush to get the harvest done. Induction being defined as treatment to point of best response then about 3 additional cycles to pin down (hopefully) a plateau. Chose Dex due to my proven prior excellent response.
2/99 – 7/99. Monthly Dex cycles (40 mg/day for 4 days) at mid month with IgG taken on first of each month. 3/5 – 1330 mg/dl, 4/2 – 960, 5/7 – 1200, 6/4 – 1400, 7/2 – 1310. While it may look like a plateau I suspect I am just trapped into a sawtooth pattern with each Dex pulse reducing the IgG then it rises until the next Dex pulse. At this point I quit all treatments (save for Aredia) to watch and see what happens and consider my options.
7/99 - 10/99. IgG rose quickly (8/6 - 2230, 9/3 - 3350). Restarted monthly mid month Dex pulses, 10/1 - IgG = 2830. MIBI scan - nothing new. All blood and urine values within or, close to, normal range.
10/99 – 8/00. Continued 4x40/month Dex pulses and IgG stayed, more or less, in the 3500 range. Blood sugar became a serious problem about 1/00 (steroid induced) with serum glucose as high as 600 mg/dl. After a couple of months we got this stabilized with a combination of insulin and Actos. At about 7/00 it was becoming apparent that the Dex was no longer doing the job as the IgG started rising (7/19 – 4510, 8/16 – 5470) quickly.
8/00 – 1/01. Tried to arrest the rise in IgG with CP cycles (1.5 gm Cytoxan by IV and 4 100 gm days of prednisone). After 4 cycles it was clear that it was not doing much – the IgG value remained about constant but wouldn’t turn around. In early 1/01 the IgG passed 6,000, rising fast, and I was feeling poorly so I decided it was time to go for the Auto transplant.
1/01 – 5/01. At the HUTCH, after restaging (IgG = 6110 mg/dl, m-spike = 4.8 g/l, Tumor burden = 50%) it was recommended that we first do a couple “debulking” chemo cycles to get the markers down to more reasonable values prior to the transplant protocol. In February and March we did two cycles (8.4 gm of Cytoxan and 430 mg of Taxol each time). The IgG dropped to 1500 mg/dl and the m-spike disappeared. Then we did the Auto (my new birth date is 4/19/01) and in May I went home. To say the process was a walk-in-park would be a gross understatement but in hindsight it wasn’t such a big deal. In May my IgG was 368 mg/dl (very low!) and there wasn’t any m-spike.
5/01 – 4/02. I just passed my 1st "birthday" and am doing great. The year has been pretty uneventful – IgG is now about 680 mg/dl and there is no visible m-spike. I agreed to an IL-2 trial during the transplant (stem cells were soaked in IL-2 and I got IL-2 by IV for 4 weeks (really nasty stuff!)) and this protocol calls for interferon alpha (INF) until relapse – so I am doing INF. I have no confidence that the IFN is beneficial, at all (literature is very mixed on this issue) but I agreed to it and will meet that commitment as long as I don’t have negative side effects (and there are not any (yet!)).
Dex-induced diabetes has disappeared since I quit taking the steroids but the steroid accelerated cataract problem wasn’t reversible and I had cataract operations (they are trivial) on 4/3/01 and 9/11/01.
4/02 – 9/02. IgG = 2,020 mg/dl and rising fast. Quit IFN (I frankly don’t think it did anything.) and declared and end to remission.
9/02 – 12/03. Tried MP but a single cycle really drove my blood counts into really scary low values (a head cold at the same time probably contributed to the problem). On 11/25/02 I started a BLT-D protocol (re Dr Coleman, Biaxin, Low dose thalidomide, and Dexamethasone). After only 2 weeks of daily 100 mg thalidomide it was clear that the protocol was working very well so I dropped the thalidomide dose to 50 mg/day. Over the period I slowly reduced the dose levels and ended up at 50 mg of thalidomide every third day, 500 mg of Biaxin /day (started at 500 mg bid), and Dex at 16 mg once a week (started at 40 mg/week). Even so by 12/03 I deemed the PN (peripheral neuropathy – which became noticeable in about 8/03) in my feet to be objectionable enough that I needed to stop thalidomide. Having read a number of patient’s descriptions of their PN I have concluded that mine was fairly mild and I was probably imagining the slight tingling in my little fingers.
12/03 – 4/04. While a number of treatments were available to me a discussion with my hem/onc yielded a second autologous stem cell transplant was a reasonable next choice. The 1st one was not really that tough but after another 3-4 years I would be about 75 and might not be physically fit enough to endure a 2nd SCT. I reported to the HUTCH on 01/07/04 and began the process. Did Cytoxan and 3 doses of Etoposide (VP-16) as mobilization chemo then harvested about 15 million stem cells/kg. I then received the 200 mg/m^2 of Melphalan and 5 million/kg of the stem cells were re-infused on 3/1/04 (a new birth day!). Due to some heavy mucositis (mostly mouth sours) this time I spent 11 days in the hospital – this factor alone made this SCT much tougher than the first. I was released to return home and flew on 4/01/04. I’m hoping to get another year and a half remission from this 2nd SCT. By then, who knows what additional options I may have?
Questions, or want to talk – call or email me (see above).
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