Bone Pain after Autologous BMT

Posted by callie28 @callie28, Dec 3, 2022

Need anyones help please.
My husband had autologous stem cell transplant on 11/23/22 ,,,,,day 4 post transplant developed severe thigh pain .. no sleep for 4 nights finally came into station 94 admitted! Still can’t figure out what is going on.. anyone else experienced similar issues
Thanks callie28

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callie28 | @callie28 | Dec 28, 2022

In reply to @loribmt "I understand what you and your husband are going through. So please, don’t hesitate to reach..." + (show)

@loribmt

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!!

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OMG… you are a Saint!!! Your information and encouragement are a gift to me..
I agree that being home is much better for healing and recouping. If they could just figure out what or why the bone discomfort, it would be helpful. I am waiting to hear back from his Dr at Mayo..
Really appreciate your info on the isolation info.. we have not seen anyone or gone anywhere, and it is hard but we know it is for the best. Thanks so very much for reaching out, I greatly appreciate it is so helpful… more than you https://connect.mayoclinic.org/comment/789438/ know! 😘
Will share

Lori, Volunteer Mentor | @loribmt | Dec 28, 2022

In reply to @callie28 "OMG… you are a Saint!!! Your information and encouragement are a gift to me.. I agree..." + (show)

Well, now I’m all teary-eyed. You just made my day. This is why I mentor others who are going along the same transplant journey. It really helps to talk with someone who has ‘walked the walk’. My doctors and team at Mayo were wondeful and I learned a great deal through my experience. Their encouragement meant the world. But until a person has gone through a transplant personally, no one understands fully what this entails. I’m so happy to be in the position to help in anyway I can.

Over this past year I had the privilege of mentoring a young woman who had the same leukemia and transplant as I did. It’s a rare moment when a mentor on Connect actually gets to meet a member in person so we did a little write up about the occasion. Thought you might enjoy some light reading. ☺️

https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/mayo-clinic-connect-brings-together-2-women-with-leukemia-46-years-apart/

I hope there’s an answer soon to your husband’s bone pain. This must be very discouraging for him but the good news is that it sounds like everything else is on the positive recovery track!
Wishing both of you a Happy New Year! Airhug! Lori

callie28 | @callie28 | Dec 28, 2022

So happy you are there for people like us..
Dr from Mayo just called my they are going to give him the steroids again for inflammation.. Dr said sometimes can happen with engraftment. Hopefully it helps..
thanks again!