Any suggestions to alleviate Bone Pain from Multiple Myeloma?

Posted by tristram @tristram, Jan 25, 2023

What does anyone do hat's helpful to alleviate bone pain. I'm newly diagnosed with MM, nd bone pain has shown up this week. Tylenol doesn't seem to help. Nor CBD cream. Nor heat. Other suggestions?

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@msdoss

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.

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From my understanding it’s the loratadine in the Claritin that makes it effective for the histamine response after Neulasta. Zyrtec has a different formulation. Anyway…thankfully the Claritin works…cheap and easy!

Honestly, that was the worst pain I had throughout my entire cancer odyssey…the bone pain after Neulasta. Fortunately it happened while I was in the hospital for a neutropenic fever. I woke up from a nap with this nagging back pain. Felt like I was in labor. 🤣 Those days were long gone!
I tried to dismiss it by moving around, lying in different positions. I’m a tough old bird but it became unbearable. Finally pushed the call button for the nurse. My favorite chemo nurse came in and figured it out! So she gave me a shot of morphine and then some Claritin. Phew… The morphine had my toes talking to me but worked until the Claritin kicked in. Then I took that for several more days.

Amazing what our bodies have gone through and recover from. ☺️

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Is Claritin likely to help with similar side effects from Enasidenib? The pain I have is mostly in my joints--hips, back, shoulders and neck. Tylenol doesn't seem to have much effect.

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@deemcrae

Is Claritin likely to help with similar side effects from Enasidenib? The pain I have is mostly in my joints--hips, back, shoulders and neck. Tylenol doesn't seem to have much effect.

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Hi @deemcrae, I’m sorry to say, Enasidenib isn’t the same type of medication as Neulasta. Neulasta is used after a round of chemo to encourage white blood cells to increase faster to help protect cancer patients from infections and illness. The Claritin often helps to minimize bone pain for patients who have had the shot of Neulasta.

The Enasidenib you’re taking is for your Acute Myeloid Leukemia. It’s meant to slow or stop the progression of your cancer cells. I’m not sure why you’re having the bone pain with this medication. I didn’t see it listed as one of the side effects but that doesn’t mean it isn’t related. There’s a lot going on inside your bones right now. That’s where all the blood cells are formed and your marrow is having to go through some ‘cleansing’…so to speak.

I’m so sorry that you’re having this discomfort. Cancer treatments and their side effects aren’t very pleasant. This abrogating drug you’re taking is kinder than chemo treatments. But can still come with side effects and risks.
Have you mentioned this pain to your hem/oncologist? They may be able to prescribe something for the pain. At the very least, I think you should tell them.
When do you have your next blood work appointment?

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Thank you--actually it's Myelodysplastic Syndrome. I also get infusions of Azacitidine; my next series begins on the 19th. I plan to call first thing tomorrow to ask about this pain. My white count is coming back, so, to that extent, it's working, but I do need to be able to function, so I hope the doctor can suggest something. Unfortunately, the cancer center here is in a bit of a state--the man who has run it for several years is retiring and they do not yet have a replacement. It's a little unnerving.

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@deemcrae

Thank you--actually it's Myelodysplastic Syndrome. I also get infusions of Azacitidine; my next series begins on the 19th. I plan to call first thing tomorrow to ask about this pain. My white count is coming back, so, to that extent, it's working, but I do need to be able to function, so I hope the doctor can suggest something. Unfortunately, the cancer center here is in a bit of a state--the man who has run it for several years is retiring and they do not yet have a replacement. It's a little unnerving.

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Oops, sorry about that. I saw the Enasidenib and jumped to the conclusion of AML. MDS and AML can share common treatments. Azacitidine is also one of the drugs used for both.

Because Azacitidine can lower blood counts, did you have a Neulasta injection after the Azacitidine to boost your WBC?

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Not that I'm aware of; my counts do go down after infusions, but rebuild. Maybe I should ask about Neulasta?

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@deemcrae

Not that I'm aware of; my counts do go down after infusions, but rebuild. Maybe I should ask about Neulasta?

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Not everyone needs the Neulasta injection after chemo. So if your numbers are increasing nicely on their own your doctor may feel it’s not necessary.

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@loribmt

Not everyone needs the Neulasta injection after chemo. So if your numbers are increasing nicely on their own your doctor may feel it’s not necessary.

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That makes sense, but my question now will be--as soon as I can call the center--whether this is an indication of differentiation syndrome. The Enasidenib side effects list does mention that as a rare possibility, and bone pain as a symtom. I'd rather not be that rarity, but I do think I have to accept that it could happen.

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@deemcrae

That makes sense, but my question now will be--as soon as I can call the center--whether this is an indication of differentiation syndrome. The Enasidenib side effects list does mention that as a rare possibility, and bone pain as a symtom. I'd rather not be that rarity, but I do think I have to accept that it could happen.

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I agree, it’s good to be proactive when you’re feeling that something is off. Every body is different and can react in a unique manner so it’s better to be safe and bring this to your doctor’s attention. Hopefully it’s not related to the medication…but then what’s causing the pain? I hope you get some answers. 🙂

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@loribmt

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.

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Well my husband has been out of the hosp for a week now and his left leg is swollen twice the size of the other one and oozing fluids so today’s ultrasound showed a femoral clot. I’m thankful they didn’t hospitalize him and are allowing me to give the lovenox. His cdiff seems to be under control now and liver enzymes are going down but also are his platelets. So they are starting to wean off steroids and still on vanc. But his appetite is back. Each day at a time.

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