Houston, Texas; firstname.lastname@example.org
1969 / Class of 2004 / Type: IgA Kappa LC / Thal+Dex, Kyprolis+Revlimid+Dex / Updated: 8/15
My name is Kim and my husband is Bob. We live in Houston, Texas. We met in 1992 in Germany while in the Air Force, got out in 1993, married in 1997, and here we are.
Back in April 2004, he was helping a friend lift a boat when a nerve pinched in his back causing him to fall to the ground. After going to a Chiropractor, who made things worse, we went to an MD at Kelsey Seybold and found out that he had some compression fractures in his back. The doctor thought it was odd to have compression fractures being that he’s only 34, so they did a bone density test – found Osteopenia in his back and both hips. That triggered an MRI and blood work, which found elevated blood calcium, elevated protein, anemia, and slightly elevated kidney levels. We later found out that his IgA was elevated at 7,800 – others were fine. He had a bone marrow aspiration and biopsy done, which pretty much verified the Multiple Myeloma. He’s been on Thalidomide for a month and took Dexamethasone the first month on 4 days and off 4 days. He also has had two infusions of Zometa. Last Tuesday, the doctor did a B2M and Chromosome 13 test. We’re still waiting on results.
Other than the fracture pain, mild rib pain, occasional hip pain, and the side effects of the medicine, he feels fine. A little tired from the anemia, but overall, feels good compared to this time last month. He’s not on any pain medicine anymore, which is a nice feeling he says.
August, 2005: A few people have requested an update on Bob so I thought now was a good time since it's been just over a year since his diagnosis.
Since Bob's diagnosis in May 2004, he's been taking 200mg of Thalidomide daily. In addition, he's taking Dexamethasone pulses. The pulses started out at 40mg for four days a month. As he started to respond to both the Dex and Thalidomide, the Dex was cut back to 20mg for four days a month. His doctor appointments have gone from monthly to once every two months, and when the appointments went to every other month, the Dex pulses went to 20mg for four days every other month. He also gets an infusion of Zometa every other month.
Side effects have been minimal, but, nevertheless, existent. The Thalidomide has caused some numbness and tingling in his hands and feet/calves. It's very annoying but not enough to discontinue the medicine. He still has mild bone pain and gets toe/foot/calf cramps periodically - some days are better than others. I think we've realized it just comes with the territory.
His blood work looks good and is all within normal range, with the exception of his gamma globulin, which is only 0.1 away from being in normal range. His doctor appointment in early August was the first time, since diagnosis, he has had no M-Spike. That was wonderful news! His doctor is thrilled that Bob's had such a good response to everything. We're hoping that continues to be the case.
Last fall, he got a consult from a doctor here in Houston for a stem cell transplant. After the appointment, it didn't take long for Bob to figure out that he has no desire/plans on having a stem cell transplant. As long as the Thalidomide continues to work and the side effects stay at a minimum, he'll continue to take it. There are plenty of other drug choices out there should he discontinue the Thalidomide, and feels that a transplant will be a last resort for him.
When he goes into the doctor's office, everyone who saw him this time last year comment on how good he looks. They all remember when he was using a wheelchair because he was too weak and was hurting so bad from the compression fractures in his lower back. Now, he's doing just about everything he wants to do, including working full time for NASA. Life is good....
August, 2007: In October of 2006, Bob's doctor retired so he had to find another one. His previous doctor recommended someone in the same practice so we trusted him and went with this other guy. Big difference between the two doctors, though: the retired doc was older and more experienced with Myeloma and the new doc is young (mid-30s) and hasn't seen as many Myeloma cases as our other doc. It's tough to lose a doctor that you really like. The new guy is working out ok but he was really pushing a transplant in the beginning. Bob still has no desire to get a transplant right now. The Thalidomide continues to work so he's staying with it.
In April of 2007, Bob's Thalidomide dose was dropped from 200mg daily to 50mg every other day. He has continued to stay in remission so his doctor decided that it was time to drop the dose down to a maintenance dose, and no more Dex! We're both thrilled about that! He has also been taking Neurontin, which is doing wonders for his Neuropathy. I've read all sorts of mixed reviews about Neurontin but for Bob, it works great.
He has a great quality of life and does anything and everything he wants to do. He's a singer and guitarist in a band here in Houston, and luckily, the neuropathy has only affected his legs and not his playing fingers.
November, 2010: Since the last update, Bob's new doctor dropped his Thalidomide dose down to 50mg every other day. The Thalodimide, Neurontin, and Zometa were the only meds he was taking for the Myeloma. This regimen worked well until around mid-2008 when his IgA started creeping up again. Doc changed him to 50mg every day instead and his numbers went back down for a few months until they started creeping back up again. This time, the doc added Medrol for a few weeks. So far, that has done the trick and he is stable once again taking only 50mg Thalidomide a day and getting an infusion of Zometa every three months. He continues to have Neuropathy below both knees but the Neurontin helps a lot with that. All bone scans and surveys have come back clean.
August, 2015: After 11 years on Thalidomide/Dex, Bob's numbers finally increased to the point that there needed to be a change. He was put on Velcade/Dex, which worked for a couple of months. The doc changed him to Kyprolis/Revlimid/Dex in July. We are currently waiting on results from the first blood work done to see if this regimen is working.
Went to MD Anderson for a consult and they are pushing a stem cell transplant. So far, Bob is not ready for a transplant.
I welcome anyone to write.
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