[Cali]

My Dad’s stem cell transplant journey

by Cali on Fri Jul 13, 2018 4:34 pm

My dad was diagnosed in late November 2017 after having extreme back pain. He completed 5 cycles of Kyprolis, Revlimid, and dexamethasone (KRD) and had his stem cell transplant in May 2018. I have often reviewed posts on this site and found a lot of information and comfort here, so I wanted to share my dad’s stem cell transplant journey to the extent it can help anyone else in the future. Sorry in advance for the length of the post.

My father was 71 years old at time of his transplant and had no other health issues besides this pesky cancer. His M-spike was 4.4 at time of diagnosis and reduced to 0.2 g/dL, and a bone marrow biopsy showed minimal residual disease (MRD) negativity prior to transplant.

Stem cell harvesting: He received Neupogen shots. Took Claritin (loratadine) but still had bad bone pain. A heating pad helped a lot. Tylenol (acetaminophen / paracetamol) also helped. Harvesting itself got 8.8 million in one day which was a relief. Veins were good, so they did not put a chest catheter in until prior to transplant, but in hindsight he might have preferred harvest­ing through chest port. Had to lie down and keep arm straight for 8 hours; not good if you have back issues!

High dose chemo: Melphalan on Day -2 of the transplant process. He Sucked on ice for 45 minutes before and 6 hours after receiving the melphalan, per doctor orders. Tough day. No mouth sores ever developed.

Chest port put in on Day -1. Smooth procedure.

Day 0 - Transplant. Definitely smelled some corn. Checked into hospital.

Day 0-14 - Had some rough times. Developed an irregular heartbeat (atrial fibrillation), despite having no history of heart issues. Caught a virus diagnosed on Day 6 right when his numbers started to bottom out, but received antibiotics, an antiviral, and IVIG treatment. Lungs stayed ok, but he had a nasty cough and fever. Nausea and diarrhea. Electrolyte issues. Extreme fatigue. Hair gone. All his blood counts bottomed out as expected and bounced back great. Rest did not go as smoothly as hoped. Do not underestimate the stress / exhaustion that will happen for caretakers too if these bumps happen. I ended up taking almost a month off of work (I was lucky that I was able to do so).

Day 14-21 - Home in my care and things got worse. He was eating very little, getting daily IV fluids. Just trying to maintain and not wretch. Ultimately stopped even taking pills because nausea was so bad; couldn’t get them down. Zofran (ondansetron), Ativan (lorazepam), Compa­zine (prochlorperazine), Reglan (metoclopramide) didn’t work well. Blood counts still great. Hard to hear that he should be feeling better and yet he feels horrible.

Day 21-28 - Back in hospital to get IV meds and a handle on nausea. What ended up working was steroids. High dose IV dexamethasone, then cut in half every day. But when he went off the dexamethasone completely, the nausea came back bad a day later, so he went back on low-dose dex with the plan being to wean him off slowly, which is working. But it was a night and day difference. I was told his prolonged nausea was extremely unusual and he got tested for GI issues, brain issues, anything else it could be, but they never found anything. Was chemo related. Bad luck.

I was really hoping for one of the stories on this forum where side effects weren’t as difficult as expected. Nope. They were even more difficult than expected. But with great doctors, patience, vigilance and focus that this is a marathon and not a sprint, we made it. The nausea finally got under control.

Day 28 - Home again. Things going a million times better.

Day 32 - Had first cancer marker blood test. No detectable cancer, i.e. M-spike negative! So gone from 0.2 to 0. I’ll be honest, if it hadn’t gone down after all he has been through, I would have been devastated even though I know from this forum it is still early and that often happens. Thanks to all of you I am still prepared for a change and that it might not stay this way, but I am hoping for the best.

Today - He is eating well, the port is out, the nausea is gone, and he is down to one tiny prednisone steroid pill for a few more days. He had cardioversion for atrial fibrillation and his heart is in normal rhythm for the last 2 weeks. Diarrhea under control with 1 Imodium (loperamide) a day. He is walking a couple of miles each day. Blood counts still great (WBC 6.6, RBC 4.0, ABs Neu 4..7, Platelets 211). Bone marrow biopsy will be at day 60 and those tests will determine next steps for maintenance therapy starting after day 90.

Best of luck to everyone here.

[Cali]

Re: My Dad’s stem cell transplant journey

by Cali on Thu Aug 02, 2018 3:31 pm

We received the 60-day post-transplant test results and my father's M-spike is undetectable and the bone marrow biopsy is negative, so he has achieved minimal residual disease (MRD) negativity. I know this result was far from guaranteed, so I wanted to share our update of a very positive conclusion to his stem cell transplant journey (so far), despite the difficult bumps and side effects post transplant he encountered along the way. He is doing fantastic now; no nausea, walked 4 miles yesterday, and feeling great. I hope this provides hope for any of you at a similar stage in your journey.

My dad will be on Revlimid maintenance 10 mg/day for 21 days, off 7, starting at Day +90. I have read the many comments / columns on post-transplant maintenance and understand what an individual decision it is. For us, it was about the doctor's recommendation, which we absolutely trust and are thankful for his expertise; he always explains pros and cons and what studies have shown (and haven’t yet shown), as well as what he believes based upon his experience as a specialist. He recommended this course though he also considered whether to do more treat­ments of Kyprolis, Revlimid, and dexamethasone (KRD), which likely would have been his recom­mendation if there was any trace of cancer still) and what felt right.

Luckily, my dad tolerated KRD induction well, with only slight nausea at the beginning that went away, and the 25 mg/day Revlimid only affecting taste buds and energy. We hope the lower dose Revlimid alone will be tolerated even better, as obviously one of the biggest questions on maintenance is quality of life.

There will be another check up around Day +120 to check M-spike and 24-hour urine test and see if any tweaks need to be made. He will also get Zometa (or something similar) treatment every 3 months. I asked about osteonecrosis of the jaw (ONJ) side effects and the doctor said he hadn’t seen that side effect with treatment given every three months, though he understands it is still a risk.

Prayers and best wishes to everyone who finds themselves visiting this site.