Copenhagen, Denmark; firstname.lastname@example.org
1942 / Class of '97 / Last Update: 1/02
My story -- up to now -- has been positive. My story will not help those who
have suffered much from MM, but hopefully I can cheer up some of those with
newly diagnosed MM and starting up a treatment plan.
I am 56 years old and was diagnosed with MM July 1997. Today my doctor told me
it was stage III. My wife and I are very active people living a healthy life
with healthy diet, much physical activity (cycling) and no smoke. Together with
some friends we had planned a five-week trip to Ecuador and Galapagos including
a one-week stay in the Amazon jungle. Due to the jungle we had to have a yellow
fever vaccination, which knocked me out completely giving very high fever.
At the beginning the hospital was not able to figure out what was wrong testing
for malaria and other exotic diseases, and two day before the scheduled
departure they advised us not to leave. After a BMB they found out it might be
MM, and followed by X-ray and MR-scan they gave the final judgment after seeing
injury to the spine and fractures of ribs. Beforehand I did have back problems,
but I had just finished a two-year project writing a book and done some other
computer intensive work, so I assigned the back problems to bad working habits.
The blood and urine did not show sign of
protein, so only the BMB lead to the diagnosis.
In August I received 20 X-ray treatments of the spine. After the fifth treatment
the back pain was considerably reduced, and there were hardly any
side effects and no nausea.
From September to December 1997 I had 3 x VAD. Although the 4 x 24 hour infusion
of the V and A was a psychological strain the side effects were minimal. The
Decadron part had huge effect on my mood. I hardly slept for four days during
each period managing all kinds of practical chores sleeping for four
From the beginning a stem cell transplant was planned, and reading about how bad
it could be, I did much effort to keep in shape. Among other things we bought a
exercise bike, which I use each day at least for « hour with pulse 140-150.
This certainly helped me when I finally had the transplant. In the beginning of
January 1998 back up stem cells were harvested and January-February after
Neupogen injections and Cyclophosphamide chemotherapy stem cells were harvested
in two two-day sessions after deciding that I
should participate in a protocol with tandem transplants. Again the side effects
were minimal, it was first after the second treatment with Cyclophosphamide I
lost the hair.
The cells were purged and frozen, and in April I received the first transplant
after high dose chemotherapy with Melphalan. At this time things were not so
easy. After a few days I had herpes zoster and after three days in isolation
when the WBC count was 0 they had to operate for mechanical ileus, a most
unlikely complication. The day after the WBC began crawling up in number, four
days later the isolation was lifted, and further two days after I was home.
Luckily, we live close to the hospital, so it was easy for me to go there for
the daily blood tests and shots of Nupogen.
Besides from the complications mentioned above there were, of course, side
effects this time, but certainly not as bad as I had read about. Loss of hair,
loss of appetite, dry mouth etc. by no pain, infections or other severe
problems. The first month the word "tired" had a whole new meaning to
me. It was hard to sleep 14 hours and wake up - tired! It took three months to
recover and five months before I was completely back in shape exercising hard on
the cycle. During this time we went two weeks on a nice vacation to Portugal
taking it quite easy.
Due to the operation I had much anxiety concerning the second transplant, but
from studies on the Internet, among other things, I knew that I should take the
second transplant. Today it is exactly two months ago, and this time it went
completely after the book. 9 days in isolation and home 2« weeks after the
chemotherapy. Last month was without appetite, dry mouth etc., but again no
severe side effects. An infection with multi-resistant bacteria developed at the
catheter, but after removing the catheter this problem was resolved.
Now -- two months later -- I am improving very fast starting to work few hours
every day. I have regained appetite after losing 5 kilos and working hard to
strengthen the back and regaining the physical shape. I do have minor problems
with the back, and especially in the evening there can be some pain in the
spine, but not much. I am 4 cm shorter now due to spinal compression, but
obviously that does not bother much.
The main problem for me at the moment is that I should feel quite happy now
having carried through this treatment with good result. But I feel like being in
a "vacuum" asking myself "what now?". Writing this letter is
one thing I am doing to fight this problem.
Today I had a long talk with the doctor. He reconfirmed that I am in complete
remission, and that the result of the treatment is the best possible. We agreed
to start maintenance therapy with Interferon and Aredia in
the middle of January. Monitoring the disease will be done by BMB every 6 month.
By this time I have had somewhere between 15 and 20 BMBs, and it is only those
taken while Nupogen has been active that have been somewhat painful.
The doctor also gave green light for skiing, so tomorrow we will book a two week
vacation in the French Alps in the end of February. If this trip turns out to be
a success I will be confident that my wife and I will be able to resume some of
our main interests: Traveling and scuba diving.
This letter is already too long, but I would like to make another point: In
Denmark we probably pay the worlds highest taxes -- you wouldn't believe me if I
told you the rates. But now I benefit from it. Years of treatment has not cost
me a dime, and my company has paid my wages although I haven't been
working very much. Hopefully, I can start working full time from January. I feel
I have been lucky tolerating the treatment and ending up with what -- hopefully
-- is a good result.
So my message to all of you is: Keep fighting, it does pay. And to many of you:
You can do much yourself to improve things. And to relatives and friends: You
are the real heroes.
Update 11/1999: In August 1999 I stopped interferon because of side effects, and in
September no more Aredia (probably because of lack of money).
In September 1999 we had our "summer" vacation, We took a bicycle
ride round lake Konstanz through Germany, Austria and Switzerland. The last week
we participated in an international conference for stereo photographers, which
was very inspiring. I ordered a very expensive custom built underwater stereo
camera - delivery time one year - don't say I am optimistic.
I am back at my job as a consulting engineer, but my working hours are reduced
to 30 per week - can highly be recommended. My employer has been very supportive
all the way through.
In December 1999 my wife and I are going two weeks to Thailand for scuba diving,
and the insurance company has not objected. And today we just ordered a winter
vacation in March, two weeks in la Plagne in the French Alps.
I know I am lucky, but I am sure that my example proves that co-operation with
the doctors, a will to survive and high spirits makes a difference.
There is hardly any bad news. I am impatient and can't understand it takes more
than 12 month to come back in reasonable good shape. I work like a horse,
collapse at 9 p.m. and cannot wake up at 7 in the morning. Shingles isn't fun
either, but I still think I am the lucky guy.
Update 01/2002: The good news are firstly that our first grandchild
was born July 2000 a wonderful little girl and secondly that I am still in
complete remission. My wife and I have had some active years with lots of traveling
and many happy hours with our grandchild.
The not-so-good news is that my constant fight to get back in shape has not
been a success. Originally the doctors told me it would take about one year to
recover from the last stem cell transplant, this was at the time for my last
update. Now I must face the fact that it is very hard to improve your shape
further after this time. In the beginning I couldn't accept this and had a quite
hard time, but in March 2000 my employer and I agreed that I could reduce my
working hours, which during 2000 turned out to be about 12 hours/week. In
November 2000 I was granted an early retirement pension. Based on this it was
possible to change my employment to be hourly paid, so now I can to work as well
as doing other activities when I feel like it, and stay home and take it easy
the rest of the time. This freedom to plan our daily life has been a success and
greatly improved our quality of life.
Before I was able to ride the exercise bike for ½ an hour with pulse 130-140
(max pulse was over 175). Now I can only kick the pulse over 130 for short
period and maximum pulse is around 165. Earlier the 17 km (10 miles) ride to
work took 35 minutes, now it takes 45 minutes. But that isn't so bad because
many "normal" people cannot follow me.
I do not take any medication now, check-up at the hospital is just a blood
sample and a short talk with the doctor twice a year. There have been treatments
of some non-malignant skin cancer, which has been without complications. I don't
know if skin cancer can be a side effect of the MM?
Being physically active and going on active vacations are still important for
us. After a doctor specialising in scuba diving gave an ok, my wife and I went
for three week to Mabul (neighbour island to Sipadan East of Borneo). Both the
diving and my 3D underwater photography was a great success. Now I am frequently
out to different club making slide shows. Some people think that scuba diving is
for James Bond type-of-people, which is not true. Under water you are weightless
and the more you relax the less air you use and can stay down longer.
In September 2001 we went to Sydney to the biennial congress for stereo (3D)
photographers. I brought a slide show "Fractal Creations", which was
very positively received. We did plan the trip with lots a resting days, but the
trip to and from Australia is long and Australia is a huge country, so during
the last part of the trip I ran out of strength. We learned the lesson and will
take it easier next time we travel. We have only few plans for next year, but
let us see!
Next month we go for two weeks skiing in France and we will celebrate my
sixties birthday there.
Now I work two days per week and spend the rest of my time with exercise, as
contact person for other MM patients, making 3D slide shows and most important
looking after our granddaughter, when she is here.
Although I am still working on accepting the facts the bottom line still
says: "Everything is fine and I am still the lucky guy."
The poet Piet Hein wrote:
Love while you've got Love to give. Live while you've got Life to live.