Hi family & friends,
Sorry for the long time between correspondence but it had been a tough month. I had my 1st stem cell transplant on February 8th and have been recovering ever since. The way it woks is that the day before they give you high dose chemo, Melphalan, to kill off your bone marrow then 24 hours later you get your transplant. The half life of Melphalan is about 16 hours so it is gone by the time of transplant.
The transplant itself is really no big deal as they infuse the stem cells over about 20” while the APN monitors you – kinda anticlimactic. The side effects from the chemo are what really knock you on your ass. The Melphalan has a slower onset, about 3-4 days & a much longer recovery than the induction chemo I had back in December. It takes about 10 days for your counts to bottom out & I do mean bottom out – 10 WBC’s (yes that’s ten) & 13,000 platelets. You feel very weak & fatigued during this time & sleep most of the time like 20-22 hours/day. Appetite goes away as gi motility grinds to a halt. I lost 15 lbs but was fat going in so no harm done. I had no problems with mouth sores which are a common problem with Melphalan but did have significant problems with orthostatic hypotension & dizziness & got IV fluids every day for 2 weeks afterwards sometimes up to 3 liters/day. One day I got significantly short of breath by just standing which was very alarming for a normally healthy person. When I got to the hospital I had a 40mm drop in systolic pressure from sitting to standing with a 50 beat increase in HR – that was the day I got 3 liters of fluid. Nonetheless to say I felt better when I went home that day.
The routine after transplant is to go to the hospital every day for reassessment, blood work & any needed treatments. It doesn’t seem like much but it is a chore when you don’t feel good. Care is managed by the APN’s & once your counts recover to safe ranges they schedule a discharge appointment with your doctor. For me it was at 14 days post transplant so we came finally came home last Tuesday after 5 long weeks. We were all home sick, especially the dogs.
Yesterday I finished a 10 day course of Vancomycin at the local cancer center for a port infection they discovered before I left. Otherwise things have gone well & I have experienced no big problems except for extreme fatigue. Everyone said it takes weeks/months to recover from the Melphalan & they all seemed to be right. At rest I am fine but simple things like showering make me short of breath & fatigued. The other day I got tired of sitting around doing nothing and decided to go outside & spray some weeds – no big deal. Well it too about 2 hours to recover from that. So I have to learn to pace myself but it is frustrating to have no reserves. It makes me feel like I’m 90 years old at times. Plus I still can’t drive (chemo brain i.e. poor concentration & absent mindedness) so Mary Jo has to chauffer me everywhere and that sucks. Don’t get me wrong however I am not complaining as this will eventually pass. We meet patients every day from all over the country who really have it bad and many of whom are much younger than me like I’m talking early 40’s and with young kids. We met another guy who had over 100 bone lesions with multiple ribs & spine fractures and shrunk over 4” in height at diagnosis. He was younger than me & looked like he was in his 70’s. One thing we all have in common is that we all feel we are at the best place we can be for our treatment. I know that I have my best shot at UAMS whether it is for a few months or many years.
Currently I am taking Thalidomide every day and a 4 day burst of Decadron every 3 weeks (hence I was up & prowling about the house at 0230 this morning) plus my regular meds. You hospital people are familiar with those big grocery sacks of meds that patients carry around? Well now I have the same – thank God for insurance.
We return to LR on April 17th for another week of pan testing & the second transplant should be early the following week. It will follow the same routine as the 1st. I anticipate 3-4 weeks for that visit which beats the hell out of 5 weeks plus the weather will be nicer. After the 2nd transplant I will be returning at 2 week intervals for vaccinations & diagnostics a few months then progress to 4 week intervals through the completion of the protocol next January. Then we will see how it goes – hopefully there will be a long, indefinite remission. I the mean time I go in for weekly labs at the local cancer center.
Dr. Van Rhee is pleased with my response so far & feels that I am probably in remission at this point but time will tell. He has made it clear that he does not want me working for at least a year even though the “medical expert” (moron) from SSDI turned down my application. We are appealing & expect it will now go through but that was a major annoyance I did not need to hear the week before my transplant.
I apologize for short or no responses to your correspondences over the past few weeks but will do better as I improve. I hope to see some of you before I return to LR in April. I have added some more pictures to the blog I hope you will enjoy.
Take care and we will be in touch.
Don