Bone pain from Neulasta (pegfilgrastim)

Posted by ahurlbert30 @ahurlbert30, Aug 31, 2020

Hi,
I’m taking nulasta the day after chemo to help boost white cells. The bone pain is horrible! Anyone have any suggestions for lessening the pain.

I have experienced severe bone pain from two different treatments. It can be quite intense, as you expressed. After being told that some patients got relief from taking over the counter Claritin, I asked my oncologist about it and was given his okay. In both cases I took it few days before through few days after and had very significant pain relief. Later a drug rep from one of the drug companies said his company had begun suggesting it. We are all different but it may be worth conversation with your ordering physician.
If you try it will you please let us know about your response? Best wishes, Nancy

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@1nan

I have experienced severe bone pain from two different treatments. It can be quite intense, as you expressed. After being told that some patients got relief from taking over the counter Claritin, I asked my oncologist about it and was given his okay. In both cases I took it few days before through few days after and had very significant pain relief. Later a drug rep from one of the drug companies said his company had begun suggesting it. We are all different but it may be worth conversation with your ordering physician.
If you try it will you please let us know about your response? Best wishes, Nancy

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@1nan
I agree with that. My oncology group had us take antihistamines as well while giving ourselves these injections (in my case, 5 nights of injections). Yes, there is pain but probably is lessened just a bit by the antihistamine.

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Hello All: Antihistamines are also being recommended for a rather rare form of cancer that I have, neuroendocrine tumors (NETs), sometimes referred to as Carcinoid. While I've never had symptoms of Carcinoid Syndrome and therefore never needed the antihistamine treatment, others have told me that it is very helpful and is part of the NETs treatment suggested by most oncologists who treat folks with NETs.

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@trixie1313

@1nan
I agree with that. My oncology group had us take antihistamines as well while giving ourselves these injections (in my case, 5 nights of injections). Yes, there is pain but probably is lessened just a bit by the antihistamine.

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There were some treatments that always began with IV antihistamine. The Claritin was a separate approach specific for bone pain. The first time I used it I experienced about 75% less bone pain. Considered myself extremely fortunate.

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@1nan
That's wonderful, 75% less pain is a good amount.

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@hopeful33250

@1nan
That's wonderful, 75% less pain is a good amount.

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Huge and unexpected.

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@hopeful33250

Hello All: Antihistamines are also being recommended for a rather rare form of cancer that I have, neuroendocrine tumors (NETs), sometimes referred to as Carcinoid. While I've never had symptoms of Carcinoid Syndrome and therefore never needed the antihistamine treatment, others have told me that it is very helpful and is part of the NETs treatment suggested by most oncologists who treat folks with NETs.

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@hopeful33250
I am very curious about your NETs. Did they present in your breast then? My second breast tumor was neuroendocrine and there is very little in the literature of a breast presentation. On my last PET scan 2 months ago, there was a very small lung nodule, too small to biopsy, so am awaiting another PET scan in a month. Hoping against hope that cancer hasn't spread there.

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Hi @trixie1313,

No, my NETs were more typical and in the upper digestive tract (three surgeries so far). NETs in the breast are a rare type of NETs from my understanding. I'm glad to hear that you are getting regular follow-ups for the breast NETs, I hope your next scan in clear or at least shows no enlargement.

What type of treatment did you have when your breast NET was discovered? I'm assuming surgery (lump removal) but was there any other follow-up treatment? Did you have any carcinoid syndrome symptoms?

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@hopeful33250

Hi @trixie1313,

No, my NETs were more typical and in the upper digestive tract (three surgeries so far). NETs in the breast are a rare type of NETs from my understanding. I'm glad to hear that you are getting regular follow-ups for the breast NETs, I hope your next scan in clear or at least shows no enlargement.

What type of treatment did you have when your breast NET was discovered? I'm assuming surgery (lump removal) but was there any other follow-up treatment? Did you have any carcinoid syndrome symptoms?

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@hopeful33250
I was given Taxotere and cyclophosphamide (TC) for the first lesion. It was thought at lumpectomy that the first lesion was totally removed, but the margins apparently were not wide enough at pathology. Prior to going back for that, I requested MRI breast and that's when the second lesion was discovered. I'm so glad I followed my gut and had a surgeon who said yes to the MRI as that is not standard care, just bone and body scan. And, had it not been the pathologists at that hospital center doing the staining technique, the NET probably would not have been diagnosed. Except for diarrhea, I don't believe I've had any carcinoid symptoms and my diarrhea was probably due to diverticulosis/itis. I've been presented to there different Tumor Boards (3 different facilities at Kaiser Permanente) and my follow up was to be PET scans at 6-month intervals, but now it will be 3 due to the new lesion which at this time is too small to biopsy. One day at a time, right?!

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@trixie1313

@hopeful33250
I was given Taxotere and cyclophosphamide (TC) for the first lesion. It was thought at lumpectomy that the first lesion was totally removed, but the margins apparently were not wide enough at pathology. Prior to going back for that, I requested MRI breast and that's when the second lesion was discovered. I'm so glad I followed my gut and had a surgeon who said yes to the MRI as that is not standard care, just bone and body scan. And, had it not been the pathologists at that hospital center doing the staining technique, the NET probably would not have been diagnosed. Except for diarrhea, I don't believe I've had any carcinoid symptoms and my diarrhea was probably due to diverticulosis/itis. I've been presented to there different Tumor Boards (3 different facilities at Kaiser Permanente) and my follow up was to be PET scans at 6-month intervals, but now it will be 3 due to the new lesion which at this time is too small to biopsy. One day at a time, right?!

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Yes, absolutely, one day at a time, @trixie1313. You've had quite a journey with cancer. I so admire your attitude. It sounds as if you have found some good medical care which is important. You've also advocated for yourself. I would never have thought about an MRI of the breast but I'll keep that in mind if anything shows up in the future.

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@hopeful33250

Yes, absolutely, one day at a time, @trixie1313. You've had quite a journey with cancer. I so admire your attitude. It sounds as if you have found some good medical care which is important. You've also advocated for yourself. I would never have thought about an MRI of the breast but I'll keep that in mind if anything shows up in the future.

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@hopeful33250
Thank you for your kind words – I requested the MRI as I kept worrying, "what if it's in the other breast," never thinking there could be more in the affected breast.

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@ahurlbert30 I have had you in my thoughts and wondering if you have thought of any other way that we can help or support you from here at Connect. Conversations so often bring up thoughts and questions that seemingly come out of nowhere. I hope your treatments are going better.
Peace, Nancy

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