Any suggestions to alleviate Bone Pain from Multiple Myeloma?

Ok I just have to put this out there just when I was screaming at the top of my lungs today at the lord in the parking lot because I had to park so far away from the hospital in the pouring rain I just got a phone call from K-Love, as I’m cleaning out an old milk spill down two shelves, a religious music channel I subscribe to and she was thanking me for that and had no clue what I needed today. Amen. If that isn’t someone watching over us.

Oh i just love moments like that!! An angel pops up when we need them most!! ❤️ 😇

Lori, It has been awhile and he has been doing so well until this last Thurs he hand some diarrhea and was very tired at our dr’s appt. His labs showed some elevated liver enzymes and CBC was down some. He had a who’s who these previous week and it showed do or 85%. So dr sent stool specimen. And we were waiting on a more precise who’s who test and in the meantime they did a bone marrow biopsy and no cancer cells seen. Amen for that. So the stool specimen got lost so I drove another one to the hosp 45 min away and somehow that got mislabeled. So by sat husband had rash on his arms and very tired and not eating and yes still diarrhea. So to the hospital we go. So another stool specimen sent on admission. So drs feel graph vs host disease and treat with steroids but doesn’t want to treat to long since he is so weak. So Monday mind you from
Sat stool c diff. Wow blow drs mind so stopped steroids and started vancomycin. Todays wed back on steroids as of late yesterday since still stooling and bilirubin is starting to come down some and CBC is starting to go up some. So they are treating for both at this point. He is only a little bit stronger but has full low now. They are getting a GI consult today. So I would appreciate your thoughts. Poor guy oh is the biggest thing the more detailed who’s who was 95% donor so goes to prove graph vs host.

Oh my goodness, your poor husband is going through the wringer! And you! Shaking my head with the misadventures of the missing and mislabeled specimens! Don’t you wonder where they went? …a little humor. But, aw, my heart goes out to both of you. It’s so stressful!

C-diff is nothing to mess around with, as you’re learning. Vancomycin should help turn that around but when he’s so weak it is really a rough to get through. It’s a relief to hear his blood numbers are going up. That should help fortify his fighting capacity for infections. Were you given any instructions for how to avoid this for yourself?
A couple of good sites to help you:
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https://www.clorox.com/learn/c-diff-cleanup-how-to-prevent-spread-of-c-diff-at-home/
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https://www.c-difficile-treatment.com/infection-control/
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https://www.mayoclinic.org/diseases-conditions/c-difficile/symptoms-causes/syc-20351691
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It’s encouraging that he’d been doing really well up to this point. If I counted correctly I think he’s around day 103-ish?? Passing that 100 day threshold is a milestone marker for progress. Generally after that time any GVHD tends to come on slowly and what does pop up gets nipped in the bud with a steroid burst. It’s like stomping out little fires. After a while, things usually start settling down with fewer fires.

I’m assuming he’s still on his anti-rejection med and all the other handful of pills for a while.
The anti-rejection pills are immunosuppressive to keep his new immune system from attacking his body. Graft=new cells vs Host=body. So once he’s able to start the slow taper from the immunosuppressant he’s taking, his immune system will start to mature and become more robust. But right now it’s a fine art of ‘tweaking dials’ until his new cells and body start playing nicely together.
It’s really tricky getting that balance just right. If he’s showing signs of GVHD then his doctor will keep him on the tacrolimus or whatever he’s taking because lowering it might allow for more GVHD. However, in order for his body to be able to fight infections, it’s in his best interest to lower the immunosuppressants. It’s a catch 22.

Having a clean bone marrow biopsy is news to celebrate. ☺️ I think once this C-diff gets under control you’re going to see your husband make some positive improvements. Right now he’s not getting much nutrition from what he’s eating so that is going to cause weight loss along with crazy fluctuations in his electrolytes and hydration. It’s really important that he gets in a lot of water during the day, pedialite or Gatorade or whatever his doctor recommends to keep hydrated/electrolytes balanced. If he’s not already eating yogurt, try to encourage your husband to have some Activia to rebalance the gut. There are probiotics he can take but some dissolve too quickly and don’t get absorbed. I didn’t have C-diff but early on with all the chemo and side effects from the transplant, Activia was palatable and really helped with all the antibiotic disruption. (Take a couple hours before or after the antibiotics). I used to stir in a teaspoon of ground flax for some fiber too.

Sorry, this got a little lengthy. I tend to think we’re sitting around the kitchen table talking…we need more coffee! ☺️
Your husband will get through this nasty business and become stronger soon. As my mom used to say, “This too shall pass.”
How is your husband coping mentally with this little setback?

They took him off anti rejection meds 4-27 in hopes he would reach 100% in donor when he dropped from 99 to 98% but then like it said it dropped big time to 85% and yea last one back to 95%. So got liver transplant and went well. Last night liver ultrasound and gallbladder enlarged and lot of slug. Crazy. As for myself I’m just gown, mask and gloves and have scrubbed house bathroom down but will definitely read the articles. Yea Dr told him slow and steady is the plan each day at a time. He just wants real food. I so appreciate these coffee breaks talks. Thanks

Oh wow! There’s more to this story than I’d realized. I didn’t know your husband also had a new liver transplant to boot! So now he is back on immunosuppressants because of the transplant.

Did he contract the C-diff in the hospital? Aw, I’m sure he’s ready to get on with life after these past months of crazy medical drama! Hopefully he’ll be able to get back to some real food soon! Honestly, the one food that helped turn me around when my guts were awful was a well done, lean hamburger on a bun! I’m not kidding. I don’t eat much meat but I craved a McDonald’s cheeseburger. To which my husband said, “Nope, not happening”. Haha but he did make me a nice burger…not mystery meat. Hahah. And that stayed down and felt so satisfying.

Stop by anytime. I’ll keep the kettle on the stove. LOL. Oh wow, is that a flashback huh? Now it’s an electric kettle but I do have a teapot that’s used daily. Hugs.

You could try some of the over the counter pain relief patches or ask your doctor for a fentanyl patch. I have had some relief from these.

My Oncologist put me on Claritan. One softgel daily. It is working beautifully. I don’t understand how a Anti-Allergy over the counter can work so well, but it does. I’ve had three Neulasta shots and bone pain is un- noticeable.

Hi @msdoss, Claritin worked like a charm for me too. I’d asked my hem/oncologist why/how it stopped that nasty side effect from the Nulastin.
He said that Neulasta can have an effect on histamine levels in the body. Elevated histamines increase inflammation, which in turn can create swelling in the bone, resulting in pain.
Claritin is an antihistamine that blocks histamine, so decreases the amount of inflammation and swelling.

Whatever the reason, it worked! Let’s hope the Neulasta days are behind us both, right? ☺️

Thank you so much Lori for your response. I was on Zyrtec for many years, due to hives. Before I started Chemo they told me I needed to change it to the Claritin. I had so much information being given to me at one time I just forgot to ask.