[KenDick]

Pain after a stem cell transplant

by KenDick on Wed Aug 31, 2011 8:07 pm

How long after stem cell transplant should you expect to have pain?

I had a hip transplant last November. Of course some of the pain is from that, and I will be going back to physical therapy to stretch that all back out. But I seem to have pain everywhere. Feet, knees (25 years of soccer playing?) and both hips and both shoulders.

I had my right hip replaced due to multiple myeloma and have a bad spot in my left shoulder blade. I have to have hydrocodone just to get out of bed in the morning.. Also. sitting down on any chair seems to cause a lot of pain in my buttocks area. Is it because of the muscle loss? Is it from the high dose of chemo one gets during the stem cell transplant process?

I am just around 100 days out of hospital, so I am around day +120..I am getting tired of taking pain meds, but cant live without them. I just took a vacation and drove around 2,000 miles in my car by myself. And I slept in a lot of very soft beds! Did I overdo it with the travel? Am I expecting to much too soon, good health wise. Everybody says I look great etc.. I just feel like I should be feeling better, but I always here it's a year before a guy can get back to "normal".

On a side note. I was Stage 4 multiple myeloma. I had 8 lesions in my hip and one in my shoulder. I took radiation for 3 weeks. That didn't get all the lesions in my hip. But, when the hip had total transplant after that he removed the rest. After that I started on Velcade / Revlimid and steroids that I can't remember the name of. In 6 and 1/2 weeks I was in complete response! I feel very blessed for that and wanted to let people know about this treatment that worked so well for me. I was lucky because the bone marrow biopsy was negative before treatment and before stem cell transplant. I will have another one done soon and have no reason to believe it won't still be negative.

I feel very, very lucky to have fought back this disease, but am just wondering if I'm feeling bad because it's just to soon to be feeling great, or because the 3 months since the stem cell transplant I basically laid around my room in bed doing nothing because I had no energy and because I'm kind of a whiner and a baby when it comes to pain etc..

Thanks for reading and any comments or advice would be greatly appreciated..

[nadia33]

Re: Pain after a stem cell transplant

by nadia33 on Thu Sep 01, 2011 1:05 am

Sorry I can't answer any of your questions but I have two for you since your story is so amazing. How much time went by between your last cycle of medication to the transplant? Were you on any meds at all during this period?

Another question is did Neupogen or stem cell collection cause any side effect for you? Fast heart rate, low platelet count, or lack of appetite?

Thanks.

[Christina]

Re: Pain after a stem cell transplant

by Christina on Thu Sep 01, 2011 12:17 pm

Of course, everyone is different, but it was around the 3 month mark after my stem cell transplant that I started to feel good again.

It sounds like you are overdoing it with a 2000 mile road trip. That's a lot of sitting, driving, and stress on the body.

I'd say take it easy.

For me , even now 5 years later, I still can only do so much and can only walk @ 1-2 miles without my back starting to bother me where the original fracture was.

Best wishes,
Christina

[NStewart]

Re: Pain after a stem cell transplant

by NStewart on Fri Sep 02, 2011 10:02 am

You have had a lot going on in the last year. I've had both of my hips replaced, long before multiple myeloma, and have had no pain in either hip since the surgery. If you didn't do any exercise at all, even walking, post transplant, then you got really deconditioned. Steroids also negatively affect the muscles in your thighs so that you are weaker from that. I know that 19 months after stopping dexamethasone I still have lack of power and endurance in my thigh muscles. My arthritis has been more problematic since my autologous stem cell transplant, but not as bad as yours sounds.

I think that taking the trip that you did so soon after your stem cell transplant was a bit excessive. I found taking a 4 day trip 100 miles from my home 8 months after my transplant was difficult. And, I had been working full time at a relatively physical job since 3 1/2 months after my transplant.

Feeding our spirits with trips like you took is good. Now, you need to pay more attention to getting your physical condition back into some sort of reasonable condition. I would suggest that you get a referral for physical therapy for a cancer fatigue program. Some of the large cancer centers have therapists who they refer to who do this type of program. That would address the fatigue, the hip issues from the replacement, and gradually help you return to a more functional life. They would also build an exercise program that you can transfer to a gym once you are done with physical therapy.

Good luck,
Nancy

[KenDick]

Re: Pain after a stem cell transplant

by KenDick on Sun Sep 04, 2011 6:14 pm

Thanks for responding and for the advice.

Nadia. I think it was around a 3 weeks or so between end of treatment and the stem cell transplant. Or maybe closer to 2 weeks. Can't remember for sure, but it wasn't very long. And, no, I didn't take anything during that time. And during collection the only problem I had was with the Neupogen was severe back pain. I think the 4th day I started having spasms real bad. I thought they would never go away. But, they finally did. I hated that Neupogen.

[La Reina]

Re: Pain after a stem cell transplant

by La Reina on Sat Aug 12, 2017 6:45 am

Six weeks post autologous stem cell transplant (ASCT) I have developed pain in both knees and back pain that keeps me awake at night. My oncologist thinks the pain may be coming from my back and has referred me to a rheumatologist for evaluation and MRI. I'm waiting for an appointment.

The pain seems to move about – knees, thighs and back. Not so sure it's simply coming from my back.

I've been started on prednisone, but it doesn't seem to be doing very much.

Could this be pain be from ASCT, and/or the stem cell harvest preparation with Neupogen?

Thanks for your responses.