1946 / Class of '91 / Type: IgG / Died 8-24-2012
Brief history... dx smoldering Myeloma in 7/91 when I was 45 and in the midst of a divorce (IgG around 3100, high marrow disease, but no lesions and agreement by two docs. to do nothing). 12/93 the IgG was up to 5100, but my then-Onc. still said to just repeat the tests in two months instead of three.
I said no thanks and got myself to Georgetown Hospital/Lombardi Cancer Clinic where I was told to have an immediate BMT. I again said no thanks, but finally got to a great Onc. who, by Feb. 94 started me on Alkeran/Prednisone. I was in partial remission in just two go-rounds, and by May we began actively considering BMT. Back to Georgetown, and in Nov. 94 I became the first patient to have BMT/Stem Cell transplant for MM at Georgetown (and the FIRST paid for by my HMO...that took some persistence on my part).
Anyway, by June 94 I had basically decided to go ahead with the transplant. The head of the transplant center at Georgetown (not the first Onc. I saw there) was very candid with me. The KEY question that made the decision almost a no-brainer was when I told the doctor that my son would graduate from law school in seven years and wanted to know my chances for being there. The doc said, "Without the transplant, it's doubtful. With it, there is a good chance."
So it was a done deal...and now, I am indeed getting ready to go to my son's COLLEGE graduation...and he is putting off law school for a year, so now I have to make sure I can hang around an extra year...or ten...or twenty.
Anyway, I went into Georgetown Oct. 30, 1994. What surprised me the most was the amount of planning needed...there were so many pre-transplant tests and procedures. I spent a night when they put a catheter in and gave me a round of Cytoxan, then had to give myself shots of growth hormone (which I did while enjoying Parents weekend at U. of North Carolina in Chapel Hill where my son had just become a freshman...I've often wondered what the cleaning crew must have thought when they found all those syringes in the motel room trash!).
Then more tests, and also the harvesting of stem cells. Early on I had been told that Georgetown would not do BMTs any more without stem cell transplants as well, and that made sense to me. I also had a wise counsel in my uncle, a retired doctor. And for the record, I was raising my two kids as a single mom, though my ex-husband was very supportive during this time.
In all, it took about two months for all the pre-transplant stuff to get done. My goal had been to be home by Christmas, and to do that I knew I had to be in the hospital by the end of October. I pushed and nudged as hard as I could to just get this done.
So I committed myself to Georgetown for a Hickman catheter to replace the first that was only two tubes. Heavy duty chemo. was given, and I did indeed have TBI, though now it seems like people are questioning it. The TBI was probably the worst of it all; a totally dehumanizing experience. I had long since lost my hair, but to stand just about bare in a cold room while being zapped was really awful. But, in 1994, this was the protocol GT was doing, and it made sense to us.
The transplants themselves were uneventful; one day I was re-infused with my stem cells, the next day with my bone marrow; both of which had been treated with interleukin; I must admit to not remembering which # of interleukin was used. Then we just waited for my counts to come back. I was exhausted, but also not happy about being confined to quarters. I also had lots of pain from mouth sores and was on lots of morphine for several days. My kids have lots of funny stories to tell about when their mom was a junkie...in our family, we tend to be a bit irreverent, but hey, it works.
The next thing I knew, it was a few days before Thanksgiving. And, unbelievably, the docs. were talking about letting me go home then...just three weeks after the transplant!!! We were all ecstatic about it, and I made it home just a few hours before my son made it back from Carolina.
I was sick and weak, so we didn't have a Thanksgiving dinner, but boy, did we ever have reasons to be thankful. I came home with an IV and learned how to infuse various medications through my Hickman. I started running a fever the day after Thanksgiving, and we rushed back to Georgetown, but wasn't readmitted. They felt I was basically doing ok.
And from there on, I had slow but steady progress. By mid-January, I went back to my office for a few hours at a time. By February, I was working 10 hours a week, and by May, 20-25 hours. By September, I was back full time (I'm the program director for a non-profit agency that develops intergenerational programs between senior adults and kids...requires lots of visits to schools and senior adult facilities, and I love it).
And the best part was that, except for that damned monoclonal spike, I was in complete remission. And I have stayed that way; just last week (April 1998), my Onc. gave me the "all-clear" at my three-month check in, with all blood levels and other markers showing absolutely no sign of active disease. I never had any bone lesions or pain...just a highly elevated IgG level and 50% plasma cell involvement.
He said TWO very important things for all you guys to hear: One, he uses the word "IF" I relapse; not WHEN. He never minces words and he knows better than to BS me. He said that studies are just beginning to show a survival increase among those of us who had BMTs several years ago...not just increased times of remissions, but actual longevity results. It gets more promising every day.
Secondly, every three months of remission brings new treatments...Aredia wasn't used 4 years ago. So, dear fighters, there is hope.
Would I do it again? I certainly feel I made the right choice in 1994, and I know that I gave it my best shot...which so far appears to be working. But now, there are so many other treatment options (isn't it amazing what changes have taken place in mm treatment in just four years?) that I would think long and hard about a transplant. It hasn't been easy; I remain more fatigued than I like, and have suffered from big-time side effects after a terrible bout with shingles; but in 1994, while somewhat controversial, even the IMF was cautiously optimistic about transplants.
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So...this is in response to those of you who wanted to know about survivors.
One or two other things in response to the postings I've read:
(1) how can anyone not be stressed if you have a serious life-threatening illness??? Don't beat yourselves up about it; try laughter instead.
(2) Re: biopsies...my first Onc. was brutal; I almost passed out the first - and only - time he did the biopsy. My doc. now is so damned quick...the most painful part is injecting the Novocain! Well, not quite true, but I agree with those folks who can just bear with it for a few minutes and be home. Perhaps because I am single with kids away at college, I've learned not to pamper myself, but it's become no big deal to just get it done with.
And, my biggest issue has been the aftermath of a terrible bout of shingles in 11/95. I have permanent nerve damage and have lots of painful outbreaks...though it's become more manageable thanks to a good doc. who specializes in pain control.
September 2000: Things have been relatively calm since my last update. However, in November 1999, my IgG level began rising, and was soon no longer within the normal range. I was finally able to start Aredia (my oncologist felt that with an IgG under 1000 and stable, he couldn't justify Aredia, despite monthly fights about it).
Since November, my counts "bounce." One month, it's 1480, then it's 1660,then it's 1370, then back up to 1680. In September, the counts were 1860; the month before the IgG was 1780. So we are in a holding pattern. All of my other markers show no change; no anemia, platelets good, B2 stable. Our current plan is to re-evaluate when the IgG gets to and remains at 2000. I'd then have another BMB (done in my Onc's office, with minimal discomfort; we crack jokes while he struggles to get through my still strong bones). I'd also have a skeletal survey; perhaps an MRI. If these tests confirm active MM, then we'll discuss treatment options. Or decide to continue watchful waiting. I'll deal with this decision when I need to, but as I write this in early September 2000, it is not today's problem.
I continue to be plagued by sometimes debilitating pain due to my post-herpetic neuralgia. So this pain wrecks more havoc with my life than MM. At least for now.
April, 2004: In March 2001, I started Thalidomide. I stopped taking it in December of 2001 due to neuropathy. For some unknown reason, I stayed in a good remission until October 2003, when, for the first time, bone involvement was found on a bone survey. My oncologist was one of the investigators in the early trials of MAC (Melphalan, arsenic trioxide, and ascorbic acid) so I was able to benefit from his connection to Dr. James Berenson and was put on this protocol.
I am now completing my fourth cycle of MAC. Early blood tests show some response, but next week I'll repeat the bone survey and a bone marrow biopsy to give a better idea of how I am doing. Nationwide, I am told that so far, only one person has had disease progression while on MAC, so I sure hope I won't be the second one.
I continue to be guardedly optimistic about my prognosis and continue to be so grateful for the support I receive from the IMF and its ACOR listserv.
January 2009: And life goes on. It's awesome for me to reflect back on my journey and realize how very fortunate I have been. I've been in and out of treatment for Myeloma, and currently remain on 0.25mg Revlimid since August '07. My M-spike remains fairly stable, but still detectable. While I can have some annoying stomach issues with the Revlimid, it's certainly much better than having advancing disease, so as of now, there are no plans to stop taking it. And in the meantime, new protocols keep developing. In my 15 years of treating Myeloma, I've seen this illness morph into a chronic incurable illness from one that, back in the 1990's, was considered quickly fatal.
So let us all be hopeful that for many, many Myeloma patients, this will be an illness we all live with, and that eventually, we die of something else!
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