[jcd123]

Slow recovery from autologous stem cell transplant?

by jcd123 on Mon Nov 21, 2016 7:27 pm

My father received inpatient high-dose chemo on November 1, and autologous stem cell transplant and November 2, so I think this means he is on Day +19.

He was released from the hospital Wednesday, November 16, but he is still feeling horrible. Nauseous, zero appetite, exhausted. It takes him over an hour just to get up and get dressed.

I think he pushes himself to do too much in the morning, and then totally crashes in the after­noon and evenings. He and my mother say that the doctors are encouraging him to move around and build up his strength, so they're going out on walks in the mornings or even stopping to run an errand on the way home from a medical appointment, even though he feels bad.

Today, for example, they walked in the morning, he had a physical therapy appointment in the early afternoon with exercises, then a very small lunch that he could barely keep down before he rested on the couch for awhile.

I know he is taking Ativan (lorazepam) for nausea, but I'm not sure of his other medications at this time.

I've been reading the stem cell transplant posts from others and they have helped a lot. How­ever, it seems like many of those writers felt a lot better by this point in the process.

I'm wondering if his fairly advanced age (78) suggests that our expectations for him to feel better quickly were too high. Also wondering if he should slow down and rest more. Not sure if confirmation of this would help, as I've been telling him and my mother, his main caretaker, to do this since he left the hospital, and it has fallen on deaf ears.

Thanks for any insight folks can provide. It has helped a lot to read your stories.

[DallasGG]

Re: Slow recovery from autologous stem cell transplant?

by DallasGG on Tue Nov 22, 2016 8:09 pm

I would think that a lack of appetite would be a huge factor in a recovery at any age. When I had my transplant, I was in the hospital for 17 days and my appetite came back on Day 17, the day I went home. But I was 57 years old when I had my transplant – 21 years younger than your father. At around Day 15-16, I didn't think my appetite would ever come back, and I felt horrible because of that.

So my guess is that once your father's appetite comes back, he'll start recovering more quickly. He'll eat more and have more energy. Being nauseous and having little appetite makes a person feel more tired and just generally blah – at least it did that to me.

[Meglet]

Re: Slow recovery from autologous stem cell transplant?

by Meglet on Wed Nov 23, 2016 12:00 am

Your dad sounds very active for Day 19 post transplant! For the 3 months between my first and second transplants, I was very fatigued and happy if I could do a minor excursion (short walk or run a quick errand) each day. It's been a long, slow recovery process.

[Julian]

Re: Slow recovery from autologous stem cell transplant?

by Julian on Fri Dec 09, 2016 1:26 pm

I'm surprised they discharged him home so early, especially at his age. I'm on Day 31 post transplant and still here in Seattle. The first 23 days were with nausea and vomiting, then they concluded that I had pseudo rejection (graft vs host) and started me on steroids. That has helped a lot. Ativan (lorazepam) works ok, but often I needed combinations of meds in order to get a handle on the nausea.

This is my second transplant. The energy recovery IS slow, for many months afterwards. Your dad will have to learn when to stop and take a break / nap, and not over-do it. Once he is feeling better, beginning an exercise program (walking) will be of great help in restoring energy, reversing muscle atrophy and strength. His diet should also include a fair amount of protein.

Best wishes to him.
Julian

[Melpen]

Re: Slow recovery from autologous stem cell transplant?

by Melpen on Sat Dec 10, 2016 4:19 pm

Sorry to hear your Dad is struggling, but he is not even two months post-transplant, so please be patient. For 78 years old, he is doing remarkably well! He should take it slow and not overdo it with exercise or physical therapy. He does not even have to be going out, or if he wants to get out of the house, he should just go along for the car ride. He can walk around the house during the hours he feels up to it and rest when not up to it. If he absolutely has to have PT, have the PT come to the house. I was eating well and still it took me six months to get back in the game and a full year to recover my previous strength and energy.

I wouldn't push him too much. Tell him to be gentle on himself. Energy takes time to recover but first the appetite and nutritional needs must be restored. I don't know what state you live in, but if you have access to legal or medical marijuana and he would be willing to try it (and his doctor is on board with it), it could do wonders for his nausea and lack of appetite. It would also be beneficial for a good nights sleep without creating the groggy feeling that Ativan (lorazepam) causes the next day.

God bless your dad, he sounds like a trooper.

[NStewart]

Re: Slow recovery from autologous stem cell transplant?

by NStewart on Tue Dec 13, 2016 12:40 pm

You've gotten some very sound advice from the others. One of the other things that I would suggest is that on the days your father has PT that he not do any other exercise. Also, if the PT hasn't done so already, ask for a home program for your father to do on the days he doesn't have therapy. This program should be updated on a weekly basis according to your father's strength and endurance. Recovery of one's energy following the ASCT is a slow and gradual process.

Let the PT be the one to give instructions to your parents. They will listen to him/her better than to you. As an example, I'm a retired PT, my mother was having arthritic neck pain. She asked me for some exercises to do, but never did them. She finally was sent to PT by her doctor. The PT gave my mother the same exercises that I had given her. My mother did them faithfully every day. She saw me as her daughter not as a professional. Let the professionals tell your parents what you've been trying to tell them.

I hope your father's appetite has improved since your first posted. Nutrition is key to all of this.

Nancy in Phila