1. < Pancreatic Cancer

Naliri and breathing difficulties

Posted by marienewland @mnewland99, 2 days ago

Has anyone had added breathing difficulty while on the Naliri - 5FU combo? It’s listed as a side effect for those with existing respiratory issues like asthma and/or interstitial lung disease (both of which I have). This is the regimen my current oncologist has recommended, but he may not be aware of? my breathing issues.

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joiedevivre | @joiedevivre | 1 day ago

Did you not tell your onco you had breathing issues? Tell him/her and let him give you his views.

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gamaryanne | @gamaryanne | 1 day ago

I am on it, but did not have lung issues coming into this other than a small lesion in my lower right lung. It was hit with SBRT just prior to starting Naliri .
My greatest side effect from Naliri has been fatigue on days3,4,5 and blood pressure drop. Lots of sleeping. Today is day 6 and I have a full day planned. I will ask others I know about the propensity to exacerbate existing lung issues and their results.

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marienewland | @mnewland99 | 10 hours ago
In reply to @gamaryanne "I am on it, but did not have lung issues coming into this other than a..." + (show)
@gamaryanne

I am on it, but did not have lung issues coming into this other than a small lesion in my lower right lung. It was hit with SBRT just prior to starting Naliri .
My greatest side effect from Naliri has been fatigue on days3,4,5 and blood pressure drop. Lots of sleeping. Today is day 6 and I have a full day planned. I will ask others I know about the propensity to exacerbate existing lung issues and their results.

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Thank you gamaryanne. I can imagine, being how active you seem to be, that it’s a bit frustrating not to have the energy you’re used to, but at the same time I’ve read your posts how it has decreased your cancer antigen. I’m thankful for that because I’ve been there a few times now; at that crossroads of looking for the next best treatment and hoping that it works. I spoke with my radiation oncologist and he says it’s only small spot in my liver so we are going to try SBRT again. I’m not sure how the chemo will work. I still haven’t heard from my oncologist regarding the breathing side effects. Please keep your positive spirit gamaryanne as it’s an inspiration for all of us!

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marienewland | @mnewland99 | 10 hours ago
In reply to @joiedevivre "Did you not tell your onco you had breathing issues? Tell him/her and let him give..." + (show)
@joiedevivre

Did you not tell your onco you had breathing issues? Tell him/her and let him give you his views.

Jump to this post

Hi there and hope your husband is doing well. I wrote to my oncologist about it over the weekend, but haven’t received a response as of yet. I’m going to give the SBRT another shot at the liver again.

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1 reply
markymarkfl | @markymarkfl | 7 hours ago
In reply to @mnewland99 "Hi there and hope your husband is doing well. I wrote to my oncologist about it..." + (show)
@mnewland99

Hi there and hope your husband is doing well. I wrote to my oncologist about it over the weekend, but haven’t received a response as of yet. I’m going to give the SBRT another shot at the liver again.

Jump to this post

Have you gotten any feedback yet on doing histotripsy for the liver? I didn't realize until last weekend that one of the super-early adopters and high-volume practitioners (Dr. Kevin Burns) was near you in Orange County (Mission Viejo).

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