Kensington, MD; BHboogie@aol.com
1946 / Class of '91 / Type: IgG / Last Update: 9/00
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
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
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.
* * *
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 November1999, 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