1952 / Class of 2001 / Type: IgG / "Midi"-allo / Remission, GvHD /
Last Update: 9/03
(Submitted by his wife)
Ralph was born in Columbus, OH, and grew up in Southern California. He had no
known exposures to carcinogens. He was sick as a child with nephritis caused by
a strep infection. Though he had a family history of MM in his paternal
grandmother, he was healthy and normal most of his life.
He was diagnosed after his chair collapsed at work and he hit the floor directly
on tailbone. Back pain got worse and worse with spasms all across his lower
abdomen. Doctors thought the injury was merely soft tissue, and ordered
aggressive physical therapy, but the pain got worse. Idiot workers'-compensation
doctor was incompetent. She was blind to the fact that something wasn't right
when Ralph was not responding to her inappropriate back treatment. Completely
missed the signs and symptoms of vertebral compression fractures. She told Ralph
he was just having "gas."
He ended up with seven compression fractures in the spine. A bone density
exam was done and found severe osteoporosis. The cancer diagnosis made seven
months after original injury. Ralph was treated by a local oncologist, Dr.
Michael Boxer who is a very nice man and very knowledgeable.
Bone damage is his major misery factor. Severe osteoporosis resulted in
kyphotic spine. By the time they realized what was causing the problem, the
fractures were too "old" to be treated with kyphoplasty, interventional
radiology. A huge opportunity missed.
Initial Plasma cells 11%. IgG 3050. Major bone demineralization. He was
started immediately on 200 mg. Thalidomide daily and 40mg of Dexamethasone, and
stayed on it for six months. Blood levels returned to normal.
He had an allogeneic stem cell transplant (sister was donor match) in August
of 2002. Transplant was preceded by 5 days of chemo. Protocol is called the
"midi" allo because it is not as harsh as a regular allogeneic transplant, but
is more aggressive than the "mini" transplant. The transplant went exceptionally
well. Did everything we were told to do. Only problem was nausea and a little
vomiting, but symptoms were kept under excellent control. The transplant nurses
at the University of Arizona Medical Center were phenomenal.
Nov. 10, 2002: Day 88 post transplant. Ralph has evidence of some
graft versus host (GVH) reaction. This is a two edged sword. A little bit is
good because you want the donor's stem cells to have an optimal immune response
against any remaining Myeloma cells. However, too much GVH can do damage to
major organs. Dr. Elliot Epner is monitoring closely (he is an excellent
clinician and heck of a nice guy). Ralph feels good, despite blood work that is
a bit off. I have confidence that he will get through this just fine. We can't
say enough good about the transplant team at University of Arizona Medical
Center. They have been great and we have every confidence in them. On Nov. 22. a bone marrow biopsy will be
done. Then we'll see......
December 6, 2002: Transplant day + 114. The first post-transplant bone
marrow biopsy report is in and shows that Ralph is negative for plasma cells.
This means that the disease is in remission! Grade 1 graft versus host disease
is present and is affecting the blood, particularly the liver enzymes, but no
steroids are warranted yet and the cyclosporine is being adjusted to manage it.
Ralph feels just fine. One thing that we so appreciate is the help of a physical
therapist who knows how to work with patients with bone demineralization. She is
teaching Ralph how to carefully do stretching exercises to help him with the
back pain caused by the severe osteoporosis from the Myeloma. It has helped a
great deal, though we know it will be a lifelong concern. We are looking forward
to the holidays this year. We have come a LONG way since diagnosis (it will be
one year Dec. 22). This year we will be celebrating instead of crying. We are so
grateful for every day of life.
June 2003: It has now been 10 months since the transplant. Although
the Myeloma seems to have abated, we have exchanged that problem for another
one: GVHD (graft versus host disease). The doctors were gradually cycling Ralph
off his anti-rejection medication, cyclosporine (he received stem cells from his
sister in an allogeneic transplant). He was completely off of it for a couple of
weeks, but signs of GVHD showed up in force. These included a generalized red,
blotchy skin rash all over the body, dry eyes, dry throat with difficulty
swallowing, tightness around the mouth, elevated liver enzymes, and nausea. So
now he's back on cyclosporine plus prednisone. We are sorry to have to go back
on these meds, but he does feel so much better since restarting them.
Ralph went to a pain specialist to see if they could do anything to help with
the back pain caused by 7 vertebral compression fractures. The doctor did a lot
of tests and offered to try vertebroplasty. This was done on four vertebra T10,
T11, L1 and L2. The procedure took about 2.5 hours. He had to lay still and flat
for 4-6 hours to be sure the bone cement hardened. They kept him in the hospital
overnight. The jury is still out on how much this has helped. Some days the back
seems better, other days we're not so sure, but we think overall, it has helped.
We are soon coming up to one year post transplant. In August, a bone marrow
biopsy and other tests will be done to see if there is any evidence of Myeloma.
We are keeping our fingers crossed. Ralph is home and is able to get out and
about. He is able to drive, go to the store, and take short walks. He still
tires easily. He is hoping to get back to work as soon as the GVHD gets under
control and his back can tolerate sitting at his workstation. This may take a
while... We are not sorry we did the transplant. I guess we thought that once we
got through that, things would get back to "normal." The road is longer than we
thought... BUT Ralph is alive and is looking toward the future.
Keep praying for and supporting those scientists and researchers who are so
close to finding out what makes this disease tick.
September 18, 2003: The one-year post-transplant bone marrow biopsy
was done on August 16, 2003 and showed no abnormal plasma cells. All other tests
indicate that Ralph's Myeloma is in remission. We are so grateful. Ralph is
still struggling with the after effects of a donor transplant--graft versus host
(GVH) disease. He has a generalized skin rash and very dry and sore mucous
membranes affecting the eyes, mouth and throat. He must instill moisturizing eye
drops/ointments at least every two hours. Swallowing can be tricky at times and
the taste-buds are dulled, affecting appetite. The back pain from previous
Myeloma damage to the spine limits many activities. The doctors say that the
effects of the GVH may improve, go away for good, go away and come back, or
never go away. In other words, they can't predict what will happen in the
future. So we cope as best we can and realize that things can always be worse.
He remains on cyclosporine and prednisone (anti-GVH drugs) with a tapering
schedule. Hopefully, with careful management he can be off all drugs eventually.
He has to take lots of prophylactic antibiotics, anti-virals, and anti-fungals.
To date, he has not had a serious infection which is GREAT because that is the
biggest cause of problems with transplants. He is diligent with his care and
follows directions to the letter. It has paid off. The one positive aspect of
GVH, (annoying as it is) is that it keeps the immune system alert to clandestine
Myeloma cells and continues it's "search and destroy" mission should any of
those bad cells still be lingering in Ralph's body. So, I guess every cloud does
have a silver lining.
The days after we were told of the diagnosis were dark indeed. It was
Christmas time and we cried all the way from Christmas to New Years and beyond.
But there comes a point when you have to stop crying and learn to live with
cancer. God knows our needs. He has sustained us and will continue to do so.
There is hope, and there WILL be a cure. At the very least this disease will be
controllable like any other chronic illness such as diabetes or heart disease.
Pray daily for all the scientists and researchers who are working so hard on
conquering this disease. Donate to the Multiple Myeloma Research Foundation.
Participate in clinical trials. We will overcome this malady. Don't despair.
Each day is a gift. Cherish it.