1952 / Class of 2001 / Type: IgG / "Midi"-allo / Remission, GvHD /
1952 / Class of 2001 / Type: IgG / "Midi"-allo / Remission, GvHD / Updated: 3/14
(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 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.
January 1, 2004: We are starting the New Year out well. Ralph is experiencing some lessening of his GVH symptomatology. Some of his affected salivary glands have re-activated and he is able to eat more of a variety of foods with better swallowing. He has even put on a few pounds that I don't think we can blame the prednisone for! His appetite has improved. He still has the eye dryness (Sjogen's syndrome) and we are keeping the Visine company stock up with so much use of their eye drops and moisturizing ointments. Skin looks better. The doctors are tapering the cyclosporine and prednisone very, very slowly and this seems to be working.
We have much to be thankful for. A big challenge at this time of year is keeping Ralph flu free. We have avoided crowds like the plague. No shopping in the crowded malls, no holiday parties. So far, so good. Sometimes it is hard for people to understand our caution. Ralph looks so normal. What they cannot see is the fragile, immature immune system that is struggling to survive and strengthen. The collapsed vertebrae are still a bother---some days are OK and other days are not. The back problem is still the most frustrating part of this whole Myeloma business for Ralph. No clearance for Ralph to return to work. This recovery process has forced us to step back and learn patience. Happy 2004! We wish you all the best doctors, nurses, treatments, and results available.
May 4, 2004: It has been 21 months since Ralph's allogeneic transplant. The last bone marrow biopsy was "clean," all blood work within normal limits except for two stinking, lousy little protein bands noted in the serum protein electrophoresis. Doggone, the Myeloma is still lurking. So, they ramped him off his immunosuppression (Dexamethasone and cyclosporine) and low and behold, his GVH ramped UP to where the inflammatory response in his throat and pharynx got so bad he could hardly swallow. We wish they had more precise ways of regulating these things, but the truth is--they don't. Sore, dry eyes still needing constant lubrication. Some prednisone eyedrops help a little. It is hoped that in time, the GVH will eventually burn out the Myeloma and the GVH will also eventually burn out. This transplantation business is much more complex than we ever realized. You don't just get your cells and then walk off into the sunset disease free. Staying alive is a full time job.
September 1, 2004: It has been two years now since Ralph's donor stem cell transplant for multiple myeloma. Tests were done for the two year milestone. There was no protein in the urine, and bone marrow biopsy showed less than 1% plasma cells. Serum protein electrophoresis showed "trace" protein. IgG and IgA are all within normal limits.
June 2004 brought us a big scare. Ralph's dry eyes from graft versus host disease became so severe that it eroded his right cornea. It happened so quickly! Within a week his body was "autodigesting" the corneal tissue to where it was 90% eroded. He was in real danger of a "burn through" which would have caused considerable visual impairment. Luckily, a wonderful ophthalmologist (who was a cornea specialist) decided to sew the eyelids of his right eye shut in an attempt to create a natural biological "dressing" for the eye. Ralph continued to diligently keep his eyes moist with eyedrops (several times an hour, and through a tiny slit on the right eye). The treatment worked! The corneal tissue re-epithelialized and healed. It was a bona fide miracle.
The other latest developments are a deep vein thrombosis in the left leg, being treated with a daily dose of coumadin. Swallowing difficulty was caused by scarring from GVHD which narrowed the passageway from throat to stomach. An esophageal dilatation was done which helped a great deal. Ralph's days are consumed with medical appointments, medication schedules, and eye-drop instillations. Back pain from old compression fractures is also a constant. I think I've said this before, but for Ralph, staying alive is a full time job. They are attempting to slowly wean him off his immunosuppression drugs. Hopefully, in time, he will be able to be off most of them. Bottom line -- two years and the Myeloma is well "beat down." We are grateful for that, but it has come with a price -- GVHD. There are no easy rides...
February, 2005: Ralph still suffers from the effects of chronic graft versus host disease, although the Myeloma seems to be under control. Still too ill to work. He lost his job due to being out on medical leave for 24 months. Started COBRA insurance. After four months was informed that he was automatically enrolled in Medicare because he has been receiving social security disability for 2 years. This means that COBRA will drop him. We panicked a bit because Medicare pays nothing for all of the required post transplant medications that would cost us about $5,000 a month if we had to pay out of our pocket. We'd be totally bankrupt in a year... Thank God, I am working at a job where I can bring him onto my health plan (they are not crazy about having to take on such an expensive patient, but we didn't ask for this and we did nothing to bring this devastation upon ourselves). Those of you thinking about having an allogeneic transplant -- think about how your medications are going to be paid for over the long haul. They are very expensive and you may be needing to take them for the rest of your life! They don't tell you these things beforehand...
June, 2005: Ralph has now relocated back to California and is being followed at the City of Hope in Duarte. We have had a great experience there. They made some changes in his medication regime and have involved an endocrinologist. Due to GVHD being too active, Ralph was returned to a daily dose of prednisone. He has done remarkably well on this. He had lost 25 lbs due to severe mucositis but after the prednisone was re-started, his mouth and some other symptoms cleared up to where he has been able to eat and gain back some much needed weight. We find the doctors at COH to be very knowledgeable and caring and the institution itself very "patient centered." Ralph also developed a nasty skin cancer on his ear which a terrific dermatologist in Loma Linda removed and he is as good as new in that department. The endocrinologist is working on building Ralph's bone density (which the Myeloma shot to pieces) and started him back on Fosamax and Vitamin D. So things are going well. For the first time in three years, we are actually going to take a vacation! We will of course be taking it easy as Ralph has to avoid excessive sunlight and his back and body tire easily. We will be staying at a fishing lodge with a terrific trout stream just 50 yards from the cabin. We've been through the mill and this trip should renew both our spirits.
December, 2005: As we approach 2006, I am happy to report that Ralph's Myeloma protein continues to be held at bay -- no traces at this time. Yippee! I guess we have to thank that old two edged sword, "graft versus host disease" for keeping the cancer under control. We go back and forth on whether the allogeneic transplant was the right thing to do. The side effects of chronic graft versus host disease are annoying, especially the dry eyes. Things go along well and then out of the blue -- (like just this past Christmas Day) Ralph's body gets so tired and he loses his appetite and feels nauseous and is down for the count for a day or two. (I figure his body is attacking a crop of wicked Myeloma cells). But when all is said and done -- we think it was probably the best option for us. Ralph is three and a half years post-transplant and four years post diagnosis. Ralph is trying to adjust to the limitations imposed by the side effects of the transplant and the vertebral fractures (which are healed, but have caused his spine to be all out of whack). When you consider the alternative -- (not being alive) -- we are grateful for each and every day. Ralph is not able to return to work, but he is able to get around the house, run errands locally, and we had a wonderful time fishing in the Sierras last summer (as long as we took it easy). His wife is so happy and grateful to have him and be with him every day. He is so brave and courageous -- and is a survivor.
July 11, 2006: Ralph was able to spend a few days stream fishing with his wife near Mammoth Lakes, CA recently. Nothing perks Ralph up like the sound of a babbling creek and catching a rainbow trout with his fly rod on a fly he tied himself. Currently, his condition has stabilized. Still no evidence of Myeloma protein in the blood. Doctor visit intervals have increased to once every two months instead of every month. Yay! GVHD is remains a big problem and Ralph still battles his severe dry eye syndrome with constant eye lubrication, sunglasses and avoiding bright sunlight. His back tires quickly due to the 8 compression fractures caused by the Myeloma in the past. He deals with this discomfort with rest and a thermophore pad. Due to his need for continued immunosuppression, he is kept on a short leash by his dermatologist as little skin cancers pop up on his face, ears, arms and hands. The dermatologist explained that this is common with patients who have survived an allogeneic BMT. So Ralph must slather 60+ sunblock on every bit of exposed skin whenever he ventures outdoors, and the dermatologist is vigilant with cutting out pre-cancerous and little squamous cell skin lesions. This August it will be four years since his transplant and 5 years since diagnosis. We are grateful that the myeloma seems to be under control. We know that can change, so we enjoy every day.
January, 2009: Time goes by so fast. Ralph is doing OK. He still suffers the effects of Chronic graft versus host disease (CrGVHD) from the stem cell transplant--but--every three months when he goes for follow-up, there is no Myeloma protein that shows up in his blood, so we are grateful for this. His health is relatively good, yet he has a narrow threshold that once exceeded---activates more CrGVHD. He is very good about taking all his prescribed medications and he stays away from crowds during cold and flu season all of which serves him well, though can be isolating. We were able to do some fly fishing last summer with relatives. Ralph had to take it easy, but he had a wonderful time as fly fishing is his very favorite thing to do.
September 25, 2011: Ralph is still here and going strong. It has been 9 years since the allo transplant, 10 years since diagnosis. Truly a miracle! Ralph is still disabled by his severe, chronic graft versus host disease. Especially annoying are his dry eyes, and dry mouth and lack of saliva production. You really learn to appreciate saliva, as lack of it affects your ability to enjoy a meal, and it is very hard on the teeth. Tooth decay increases. Have paid a fortune for dental repairs. Another problem that has developed from the GVHD is growth of scar tissue in the esophagus that can make it hard to swallow. About every 6 months or so, he has to go in for an esophageal dilitation or "neck stretch" as Ralph likes to call it. That being said---the myeloma seems to be under control. As much as we dislike GVHD--it seems to take care of those cancer cells. So, as we have said before---every day is a miracle.
March 26, 2014: Ralph D'Errico continues to survive in the face of this awful illness. While the stem cell transplant beat down the myeloma, he continues to deal with the aftermath----skin GVHD, many skin cancers (he sees his dermatologist often for removal), a delicate immune system, and teeth, gum and tear duct problems due saliva and tear duct sclerosis caused by GVHD. Yet, we are together---my sweetie and I, and I continue to be amazed at Ralph's fortitude at battling the irritations of the procedure that saved his life.
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.
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