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Bob's SCT
It is, of course, important to have the procedure done in an institution that will give you the good nursing care that is SO important to recovery. I was so very fortunate, in that Inova Fairfax (Virginia) Hospital has scads of SCT and BMT experience, and the gals and guys on the oncology floor give loving care. The procedure really wasn't bad at all. I had the tri-lumen catheter installed in my left chest under sedation in the operating room .....I woke up with no pain, and immediately started taking the 4 days of growth factor shots to stimulate the stem cell production in my marrow. I was warned about "bone pain" that is caused by a swelling of the marrow due to the growth factors. The third nite, I awoke with very intense pain in my sternum - gosh I though I was having a heart attack, and was all ready to yell for "911" when I realized the pain was also radiating from the hips and legs. Heart attacks don't do this, and I remembered the "warning". A couple of pain killers did the trick. The StemCell harvesting, (aphoresis) was a no-brainer. Normally, you sit in a chair and they hook the tri-lumen catheter up to the machine.....one line sucking blood out, passes through the machine where the stemcells are removed, and then it is returned to your body via another line. It usually takes 2,3 or 4 sittings of 6 to 8 hours each day to harvest enough cells. On the evening of the first day, the nurse-supervisor called me and told me that they got enough cells in one sitting for 4 transplants! (I almost broke their record: 15 million stem cells in 6 hours) No wonder my bones ached! I checked into the hospital for the transplant a week later....they decided to do me as an inpatient, as I have no caregiver, and the outpatient program demands someone to really care for you. As soon as I hit the bed, they plugged in i.v. Atavan, which is a very good anti-emetic on it's own, but also is an amnesiac. (related to Valium). This serves a dual purpose: anti nausea and it makes "time fly"....you really don't remember everything. The high dose (actually a lethal dose) of Melphalan was started soon afterwards. I felt no untoward side effects. The next day, I got the "second bottle". CBC's and chemistries were run 2x a day, and my white cell count started falling the next morning. By day 4, I was neutropenic (no white cells), and was then re-infused with my own stem cells. . No problem there either. Within 3 days, my white cell count was "recovering"...slowly at first, then doubling every day. As my platelets also fell due to the Melphalan, I did have 4 bottles of platelets, and 3 bottles of packed red cells to help keep my energy level up. On the 21st day, (right on schedule) everything was "in the green zone" and I was discharged. After my son drove me home, I got in my own car and went to the grocery store. Side effects: nasty diarrhea! I called it the Aztec Two Step, as that is all I had: two steps! Weakness, yes: the staff did encourage me to "get out of bed and walk the hallways" as much as possible. Appitite: it was fine at first, but got progressively worse, as my taste buds start disappearing. By the time I was discharged, I couldn't tell the difference between the finest steak, and my cat's litter box. (solution? stop eating out of the litterbox!) I lived on Boost and Ensure for 2 months, until my taste buds slowly came back. Now, if it doesn't crawl off the plate fast enough, I eat it. Nothing special was done to my home ....L'il Tiger,my cat was still my buddy. I drove back to the clinic every day for 2 weeks after discharge for CBC's, platelet and chem counts. (they watched me like a hawk - great program) Outside of feeling "weak and shaky", I really felt great! Only one BIG problem: 2 months after the SCT, I was hit with a horrible case of Clostridia difficile, an intestinal "opportunist" that strikes when immune systems are compromised. I reported the continuing diarrhea, and had received increasing doses of the appropriate medicine (metronidazole), but the C.diff kept returning. I suddenly got VERY ill, and collapsed in my doctor's office. They rushed me to intensive care, and was stabalized there, with a 104 fever and severly dehydrated., and a heart rate of 135 bpm. They were REALLY WORRIED: I read my chart, and they were using terms like: "we are very concerned"; scary....They hit me with every antibiotic known to man, and got things under control ..this took another 8 days in the hospital. Since then, however, I feel wonderfull. I started running a wee bit every day, and now am up to a mile walk/run alternate every day. I have returned to work, selling realestate about 20 hours a week. Now,, in the summer, I swim every day for an hour. So far, 14 months later, I am still in CR, but IF and WHEN the Beast returns, I will opt for another SCT without hesitation, as I have plenty of stem cells in storage. My advice: just make darn sure you are going to a facility that has plenty of experience in BMT's and SCT's. The highly observant nursing care is ultra-important! AND: chomp your vitamin E capsule (400units) twice a day - keep the mouth sores from occurring. Look on it as another adventure! Update from Bob! (June 20th, 2005) Hi Beth! ------------------------------- Good Afternoon Beth and all! June 17th, 2006 Here's the "every-six-months update" following my SCT of March 2003. The Beast is still in the cage, and I am celebrating 3 years and 3 months of Complete Remission. No m-spike in blood or urine chemistries, and no change in the skeletal survey which my oncologist runs every 6 months. He just did my yearly BMB, and it also is completely normal for "MM in remission." Whew! I've been continuing the Thalidomide, 50mg/day as maintenance since November of 2004. High-dose vitamin B-6 and B-12 seems to hold the PN at bay. Sooner or later we'll have to smack the Beast down again, but so far, so good. Another SCT is always in the game plan "when needed." Best regards to all! Bob Oberle, Chantilly, VA 68 and still kickin' --------------------------------------------- Good Afternoon, Beth and All! (Feb 2007) If you want to post it, Beth, here is the latest update to my SCT story. As of this morning, Feb 13th, I celebrate my 4th year (48 months of Complete Remission). All of the test results just came in, and the chemistries and hematology are all "in the green", and "no monoclonal proteins detected- normal protein electrophoresis" are the result of the SIEP and UPEP...Hooray! The Beast is still in the cage. I had my yearly full skeletal survey done also, and there is no change from the ones previously taken in years past.....no new "holes in the head", so I'll just have to live with the ones that are there. I am still taking the 50mg of Thal daily as maintenance and Aridia every 3 months. The PN is annoying, but the large vit.B dosage is keepiing it under control (mostly). Best regards to all! Bob Oberle, Chantilly, VA
Good Evening, Everyone! (Update August 21, 2007) The news continues to be very, very good. The latest round of tests is virtually unchanged from the previous: hematology and chemistries normal across-the-board, and the wonderful "normal protein electrophoresis, no monoclonal proteins detected" on the SIEP. So, the Complete Remission continues - now 4 years and 6 months. Whew! I have been most fortunate. I have "backed off" the Thal to 50mg every 36 hours, and continue the Aridia every 3 months. Other than trying to lose weight (like 30 pounds), I feel wonderful. If a hearty appitite is a sign of good health, boy am I healthy! My very best regards to everyone! Bob Oberle, Chantilly, VA
Good Afternoon, Everyone! (Update, February 2008) Every three months, my doc runs the ETKM Profile (EveryTest Known to Man). The results continue to be very good: chemistry and hematology panels totally normal, and the critical SIEP and UPEP state: "normal protein electrophoresis, no monoclonal proteins detected." My yearly skeletal xray survey shows no changes from ones in past years. Wow! Five full years since the StemCell Transplant, and the Complete Remission continueth. I am one very fortunate patient. Full credit has to go to the medical staff here: they have played me like a fiddle. I could be a poster-child for the SCT program, but I am entirely too old and homely. I continue with the Thal, 50mg every 36 hrs, and Aridia every three months. Food is wonderful, and Thai food is the best of the best. LOL Best regards to all! Bob Oberle, Chantilly, VA |
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