Bone pain from Neulasta (pegfilgrastim)

Posted by ahurlbert30 @ahurlbert30, Aug 31 11:55am

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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@trixie1313

@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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Trixie,
I was reading your posts and saw the nodules on the lung. Can you keep us posted on the outcome on that?? I had breast cancer in 2007, at the Mayo dr Tran was my surgeon. I had a skin sparing double mastectomy and had multiple complications from the expanders to the silicon implants, which are very painful because they cut the pectoral mussel, small slice down the middle to put the silicone in and the left side went into spasm mode. Now I have pain from that and the capsules the body makes. Anyhow I went to the mayo clinic in 2019 in September for 12 year check up and I complained about my love side of my chest I had a lot of pain and they just sent me home the doctor said you’re always complaining about pain and did nothing. By November I was so sick I had double pneumonia in my lungs and they found large cancer mass in my left long so we just remove the lobe a couple months now and I just had a CT scan And Dr. man’s Field called me back and said there’s problems with the nodules in my lungs looking like there’s cancer again, so I would love to see what you’re going to do with the nodules. Thanks for listening to me Trixie I’m really blue right now very sad that I have to keep fighting this stuff but I’m gonna do it I want to see my first grandchild born if I could ever get My son married.🤣😂😂 he is only 25. I go back September 17 and I’ll find out what they’re going to do about that, have a good night

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@susiethomson

Trixie,
I was reading your posts and saw the nodules on the lung. Can you keep us posted on the outcome on that?? I had breast cancer in 2007, at the Mayo dr Tran was my surgeon. I had a skin sparing double mastectomy and had multiple complications from the expanders to the silicon implants, which are very painful because they cut the pectoral mussel, small slice down the middle to put the silicone in and the left side went into spasm mode. Now I have pain from that and the capsules the body makes. Anyhow I went to the mayo clinic in 2019 in September for 12 year check up and I complained about my love side of my chest I had a lot of pain and they just sent me home the doctor said you’re always complaining about pain and did nothing. By November I was so sick I had double pneumonia in my lungs and they found large cancer mass in my left long so we just remove the lobe a couple months now and I just had a CT scan And Dr. man’s Field called me back and said there’s problems with the nodules in my lungs looking like there’s cancer again, so I would love to see what you’re going to do with the nodules. Thanks for listening to me Trixie I’m really blue right now very sad that I have to keep fighting this stuff but I’m gonna do it I want to see my first grandchild born if I could ever get My son married.🤣😂😂 he is only 25. I go back September 17 and I’ll find out what they’re going to do about that, have a good night

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@susiethomson
Hi Susie – I will mention what happens next. What I am hoping is that this nodule is due to bronchiectasis or atelectasis. A few years ago I was hospitalized due to bronchiectasis with atelectasis where my lungs basically glued together. I was quite ill with the flu in the beginning of March so I'm hopeful that what showed up was inflammation from that, but time will tell. I am so very sorry you have gone through so much. As an aside, I was VERY LUCKY so far as my daughter invited me into the delivery room last June and I was there to see her daughter born. My main goal is to be here to see all my grandchildren grow up. Let us know how you do on 9/17…only think positive thoughts. I sure do wish you the best.

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Prayers for you. Stay well and take care.

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