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Immunotherapy and possible long term effects: Have you had any?

Posted by shoop1966 @shoop1966, Sep 13, 2021

I first reached out on this site a little more than a year ago because my Wife was diagnosed with Stage 4 Metastatic Bone Cancer. I'm glad to report she has continued to improve as much as possible and has been able to handle the immunotherapy for almost a year now which has brought all of her numbers is the normal range. My question is concerning long term affects of immunotherapy. I know this treatment is still fairly new but She is showing more issues not related to the bone cancer; skin sores, jaw/teeth pain & neuropathy. Has anyone been on this treatment for an extended time

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Mentor
Chris, Volunteer Mentor | @auntieoakley | Sep 13, 2021

Not sure which immunotherapy she is on, I am sure not the same one. But my brother has been on tecentriq for 18 months. He does have a few issues, but for him the alternative is a very short term prognosis with a very bad actor of cancer. Is there other options for treatment for your wife? Is her doctor managing these side effects well? Do you know if they are side effects from the drug or other issues related or non-related to the cancer?

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shoop1966 | @shoop1966 | Sep 13, 2021
In reply to @auntieoakley "Not sure which immunotherapy she is on, I am sure not the same one. But my..." + (show)
@auntieoakley

Not sure which immunotherapy she is on, I am sure not the same one. But my brother has been on tecentriq for 18 months. He does have a few issues, but for him the alternative is a very short term prognosis with a very bad actor of cancer. Is there other options for treatment for your wife? Is her doctor managing these side effects well? Do you know if they are side effects from the drug or other issues related or non-related to the cancer?

Jump to this post

Ipilimumab (Yervoy)
Nivolumab (Opdivo)
The Doctors believe its from drugs and not the cancer but as you mentioned with your Brother, Doctors do not like the alternative prognosis. She has been on Methadone for the bone pain but has feeling so much better that she is trying to ween of the heavy drug. She's had an incredible recovery so far but she see this as a downer even though its helping her in this fight.

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1 reply
Mentor
Chris, Volunteer Mentor | @auntieoakley | Sep 13, 2021
In reply to @shoop1966 "Ipilimumab (Yervoy) Nivolumab (Opdivo) The Doctors believe its from drugs and not the cancer but as..." + (show)
@shoop1966

Ipilimumab (Yervoy)
Nivolumab (Opdivo)
The Doctors believe its from drugs and not the cancer but as you mentioned with your Brother, Doctors do not like the alternative prognosis. She has been on Methadone for the bone pain but has feeling so much better that she is trying to ween of the heavy drug. She's had an incredible recovery so far but she see this as a downer even though its helping her in this fight.

Jump to this post

Whatever she needs for bone pain, is what she should take as long as it does not interfere with her quality of life. My husband has a bone marrow cancer that ate holes in all of his bones and collapsed 4 vertebrae. He has been on a low dose long acting oxy and it works pretty good, there is always some breakthrough pain but he lives with that over taking more opiates that would take away some quality of life. My brother with lung cancer has actually had very little pain, since the lungs don’t have pain receptors. It has not invaded his bones thankfully. I am hoping that your wife has enough control on the cancer to be able to reduce without pain. Are they managing the side effects from the immunotherapy?

REPLY
1 reply
shoop1966 | @shoop1966 | Sep 13, 2021
In reply to @auntieoakley "Whatever she needs for bone pain, is what she should take as long as it does..." + (show)
@auntieoakley

Whatever she needs for bone pain, is what she should take as long as it does not interfere with her quality of life. My husband has a bone marrow cancer that ate holes in all of his bones and collapsed 4 vertebrae. He has been on a low dose long acting oxy and it works pretty good, there is always some breakthrough pain but he lives with that over taking more opiates that would take away some quality of life. My brother with lung cancer has actually had very little pain, since the lungs don’t have pain receptors. It has not invaded his bones thankfully. I am hoping that your wife has enough control on the cancer to be able to reduce without pain. Are they managing the side effects from the immunotherapy?

Jump to this post

I believe her Doctors are doing a good job of trying to balance but my Wife's concern is the effects from Immunotherapy and I wanted to see what others were going thru. Appreciate the feed back!! Prayers for your Husband & Brother!!

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