Bone Pain after Autologous BMT

Hi @callie28 Having bilateral thigh pain after a stem cell transplant isn’t a symptom I’ve heard before. Having a transplant, with all the preconditioning chemo and the infusion of cells itself can have a number of side effects with the most common being nausea, fatigue, etc. Getting your husband back in Station 94 is the best place he can be at this time. They’ll work to get to the bottom of his symptoms and in the meantime can offer him some medications to get the pain under control.

He should be getting close to the engraftment stage of his stem cell transplant. A lot of discomfort can happen during the previous days to that when all the blood numbers are at their lowest point. He had MM if I remember so perhaps that has something to do with the pain. However, once the blood numbers start climbing, especially his WBC, hopefully that will bring him some relief!

Has he been given anything for the discomfort?

Thanks so very much for prompt response.,,If anyone has any info/thoughts please send forward

Checking in, @callie28. Has the pain subsided? How are you and your husband doing?

Hi, we are at day 18.The lag pain he was having landed him in the hospital for 5 days to try to get relief., What they did is put him on Claritin and a muscle relaxer.. At day 16 engraftment day did not feel well, very weak. We are at day 18 now and having knee pain, and they are telling us from the engraftment.. anyone experience any type of discomfort with engraftment?
Thanks

My husband had BMT on November 23, engraftment on day 12 Dec 4. He developed bone pain in ankles and knees and hip around engraftment. Not going away or getting better. Has anyone experienced this? Have seen lots of PAs at outpatient clinic all have a different option and treatment for it. We have not seen our transplant Dr since Nov 7 when we reviewed work up test results with her.. Anyone have any thoughts?
Thanks. Callie28

My goodness, @callie28 I’m so sorry to hear your husband is still experiencing all of this bone pain. I’m wondering if it’s not so much related to the actual transplant, since this was auto and using his own cells but more-so to the chemo?
I remember having bone pain after my chemo treatments for AML. I had to drink tons of water ( over 64 oz daily) as the toxins and dead cells needed to be flushed from my body. If I didn’t, walking was difficult because of the join pain. But that only lasted a few days. When I’d walk and drink plenty of fluids that all disappeared.
After each week of chemo, I was given Nulasta to regenerate the WBC faster. It worked but the bone pain associated with that was nasty. The anti-histamine in Claritin worked better than morphine for that. But I see your husband has already been down that road without much help.
Low hemoglobin can also have joints aching. Are his numbers continuing to climb? Is your husband able to drink a significant amount of water daily?
PA’s and NP’s are guided by the direction of the transplant doctor so they must be communicating with her about this. They can’t usually make a call on treatments or diagnosis without the transplant doctor giving direction. What are the theories?
I surely hope he finds some relief soon! Is everything else with the transplant going ok for him? How are you holding up?

I can’t thank you enough for all of the valuable information. It is tremendously helpful. He was drinking a lot of water, but has back off a bit, but will get him going again..
It has been a long journey and to be honest, I am exhausted, but because of the support of the people on this site it keeps me going. A million thanks..

Good morning, @callie28. Thought I’d pop in to see how you and your husband are fairing. He’s at day 34 I think? He should be starting to turn the corner in his recovery from some of the worst symptoms. Has he had any relief to his bone pain in his legs?

Good morning, it is so great someone is checking in on us.. Yes say 34. Today not such a good day. Not feeling good! Some nausea today and still having the bone discomfort.. Dr gave him 6 day of steroids and that really helped, but 2 days after they were done discomfort came back in ankles, knees and hips..
He went on treadmill today slow for 10-15 minutes… He is really trying, but this is tough. When does this energy and achy joints thing get better.. They send you home and no one has checked in on us.. Tough day for caregiver too!! Tired! We stayed home for holidays by ourselves for safety, but they never told us about being around people. We just have assumed you have to isolate until we go back on January 27th.
Any insight or suggestions?
Awesome that you are checking in. Thanks 😘

I understand what you and your husband are going through. So please, don’t hesitate to reach out with any questions or if you just need a ear or strong shoulder! When having an autogenic transplant, patients do get sent home earlier that if they were given a donor’s cells. I know it seems so hard to be just ‘sent home’ but it’s not as though he’s being dismissed.
There are advantages to being home. It’s safer by avoiding infections of being in a hospital. Recovery is faster because while being home, patients tend to exercise more by walking to the kitchen, bathroom, walking around the house. Certainly the atmosphere is better with more normalcy.
There isn’t much more the medical staff can do for him in a hospital because now, it’s just a matter of time. Recovery takes quite a while when you consider what the body went through. There’s a lot of trauma from his MM, meds, chemo, transplant…. Think about this in relation to a surgical procedure. It hasn’t been 6 weeks yet. It’s not unusual to be still be fatigued and nauseated. It’s encouraging to hear he’s pushing himself on the treadmill daily! That’s excellent!

I’m sorry to hear that his bone pain returned. That has to be so draining for him! Since he was diagnosed with Multiple Myeloma, did he have any pain associated with that disease? I’ve heard that can be really painful. Do his transplant doctor or hematologist have any ideas where this current pain is coming from?

Being the caregiver…wow, honestly, there are times I think caregivers have it worse. I always felt so sorry for my husband. He was such a rock for me but I’ve watched him age while I just keep improving. He did all my worrying, food prep, laundry, chauffeuring, had to be ‘on guard’ all the time and then all the household chores, errands, business end of things, etc., for quite some time. Now life is back to normal but I can see he still worries and it has to be exhausting though he never complains. I’m not sure I could be as patient as he is. So hang in there, your husband is most grateful. 🙂
About isolation… how are his blood numbers coming along? Even if his wbc is back to ‘normal’ your husband will always be immunocompromised. His immune system will never be as robust as it was before his illness. So he (and you) will always have to be vigilant to avoid illnesses such as flu, Covid, RSV, etc.
He probably doesn’t need to be isolated but he will need to mask anytime he’s out in public at a store, church, gathering at friends and family homes. Keep hand sanitizer nearby as well. Don’t take chances. ☺️

My husband and I do the same thing. He has to be careful so that he doesn’t get ill because we live together. So, we both wear N-95 masks in public if we’re inside stores. My family and friends know that when they visit they will be asked to wear a mask anytime we’re in house. Workmen are also asked to mask up. It’s just a given. Our daughter and husband visited us for a week. We all wore masks in the house and no one complained!

Some relatives aren’t happy about that and have refused to come to visit us. Well, then that’s their choice. If a simple request of wearing a mask comes between us …so be it. I didn’t go through everything to get where I am today, healthy, happy and a second chance at life, to have it taken away by a virus I can try to avoid.

To be on the safe side, I would wait until your husband’s next appt the end of January to go into a crowed store. Maybe grocery shopping when it’s an off peak time. Eating in restaurants is a no no for the time being unless you can eat outside on a patio area. But this isn’t forever. This is a critical time and it just takes time… You’re doing great!!