How to fight cisplatin side effects like nausea & fatigue?

Posted by kamrin @kamrin, Jan 12 3:34pm

I've been feeling so tired, and it's only been week 1 of chemoradiation for Hpv 16+. I cant imagine how the end of treatment is going to be. I know it's different for everyone but can it be minimized?

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Profile picture for lizzyj58 @lizzyj58

@woodsy1 My husband had the tonsil with tumor removed but cancer had spread to nearby neck lymph node,right side for both. We weren't told size, just that as tumor was removed he was accepted into the clinical trial. His cancer was hpv +16. He did fine until last radiation as he had both chemo and radiation for 2 days. They gave him cisplatin 100mg split over 2 days twice, both split over 2 days. We say chemo dr and apparently for 3 weeks he is in the chemo cycle. Watch for low sugar symptoms, my husband had 2 bouts of double vision, gave him 4 glucose tablets and this helped, he isn't diabetic. So in all he had 15 radiation treatments and 2 chemo sessions with lots of hydration infusions. If I can answer any more questions please let me know. The worst symptom he had was loss of taste,he's still not eating a whole lot but trying different things. His last treatment was 12/31/25.

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@lizzyj58
Thanks Lizzy, happy to hear he made it through it without alot of complications.
I'm having some taste changes now too . I understand these changes get resolved over time so that's something to look forward to.
The thing about his treatment plan is it wasn't excessive to the point where the throat and teeth literally get wrecked from the radiation not to mention fibrosis in the neck. I bet he comes out of this free of cancer like so many trials have shown dating back a decade. Your husband finished treatment the day I started . Heres to a happy cancer free 2026 !

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Profile picture for woodsy1 @woodsy1

@justwow
Sounds like you are on the right path doing the research and weighing best options.
We can certainly learn a lot from other people's past experiences with different treatment plans and outcomes so am thankful for this forum and people willing to contribute already.

If you haven't seen the excellent links roblem posted on the other thread titled "HPV Tonsil cancer: I'm very nervous about chemo and radiation" do read through ALL of those.

I was diagnosed Oct 2 2025, T1 N1 M0 HPV P16+. Right tonsil, right node. Stage 1. the tonsil tumor was 3,5 cm and node was 1.5 cm . By the time treatments started the tonsil was probably 4.5 cm. Took almost 3 months for treatment to get lined up with all the tests, scans, consultations and scheduling so that all made me a bit anxious.
Am now 11 radiation treatments and 2 chemos in.
Done with chemo that cesplatin 74 mg dose per cycle 1 week apart really wreaked havoc on my body, immune system and digestive tract.
A shingles outbreak and minor cuts or abrasions became infected.
Noticed blood work showing low RBC red blood cell count after 2nd week chemo. Other blood tests showing changes as well all heading in the wrong direction.
Anyway long winded today getting excited about finishing radiation next week . I am dropping out at 16 radiation treatments. The tumor is hardly visible anymore. My call based on compelling research data, trials and studies.

Let the dust settle while I still have some quality of life left and see what a pet scan shows in 3 mos. and go from there. My years here are growing slim anyway so I'm ok with my choices. I've had a good run. Best of luck to you and whatever you choose to do. Keep up the fight.
Just my opinion but the standard of care 35 radiation treatments and 7 chemo cycles seems like an antiquated plan for most any P16+ oropharyngeal cancer patients today . Keep researching and I bet you will come to the same conclusion.

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@woodsy1 Dr said to expect not too good bloodwork results for a while as both chemo and radiation take a toll on the body. Cisplatin is a tough one but seemly is very effective. Headaches are another side-effect . Will read that post. In my husband's case the tumor was growing into the tonsil so dr removed it as well as surrounding tissue he got clear margins. That was tough on a 69 yr old male! Really hope all goes well for you and 3 month scan is clear. Keep us updated.

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Profile picture for woodsy1 @woodsy1

@justwow
Sounds like you are on the right path doing the research and weighing best options.
We can certainly learn a lot from other people's past experiences with different treatment plans and outcomes so am thankful for this forum and people willing to contribute already.

If you haven't seen the excellent links roblem posted on the other thread titled "HPV Tonsil cancer: I'm very nervous about chemo and radiation" do read through ALL of those.

I was diagnosed Oct 2 2025, T1 N1 M0 HPV P16+. Right tonsil, right node. Stage 1. the tonsil tumor was 3,5 cm and node was 1.5 cm . By the time treatments started the tonsil was probably 4.5 cm. Took almost 3 months for treatment to get lined up with all the tests, scans, consultations and scheduling so that all made me a bit anxious.
Am now 11 radiation treatments and 2 chemos in.
Done with chemo that cesplatin 74 mg dose per cycle 1 week apart really wreaked havoc on my body, immune system and digestive tract.
A shingles outbreak and minor cuts or abrasions became infected.
Noticed blood work showing low RBC red blood cell count after 2nd week chemo. Other blood tests showing changes as well all heading in the wrong direction.
Anyway long winded today getting excited about finishing radiation next week . I am dropping out at 16 radiation treatments. The tumor is hardly visible anymore. My call based on compelling research data, trials and studies.

Let the dust settle while I still have some quality of life left and see what a pet scan shows in 3 mos. and go from there. My years here are growing slim anyway so I'm ok with my choices. I've had a good run. Best of luck to you and whatever you choose to do. Keep up the fight.
Just my opinion but the standard of care 35 radiation treatments and 7 chemo cycles seems like an antiquated plan for most any P16+ oropharyngeal cancer patients today . Keep researching and I bet you will come to the same conclusion.

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@woodsy1
I think I had asked that question once before what if I just dropped out of the study at 15 or 16 weeks and leave it at that…… that gives me two full rounds of cisplatin and that gives me the 15 rounds or 15 days of treatment no doubt 20 if I go that far….. that’s food for thought.

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Profile picture for woodsy1 @woodsy1

@lizzyj58
Thanks Lizzy, happy to hear he made it through it without alot of complications.
I'm having some taste changes now too . I understand these changes get resolved over time so that's something to look forward to.
The thing about his treatment plan is it wasn't excessive to the point where the throat and teeth literally get wrecked from the radiation not to mention fibrosis in the neck. I bet he comes out of this free of cancer like so many trials have shown dating back a decade. Your husband finished treatment the day I started . Heres to a happy cancer free 2026 !

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@woodsy1 Dr said to look on trying to eat with little or poor sense of taste as a chore. Which I suppose it is at this point. Yes,let's look on 2026 as cancer free year.

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Profile picture for lizzyj58 @lizzyj58

@woodsy1 My husband had the tonsil with tumor removed but cancer had spread to nearby neck lymph node,right side for both. We weren't told size, just that as tumor was removed he was accepted into the clinical trial. His cancer was hpv +16. He did fine until last radiation as he had both chemo and radiation for 2 days. They gave him cisplatin 100mg split over 2 days twice, both split over 2 days. We say chemo dr and apparently for 3 weeks he is in the chemo cycle. Watch for low sugar symptoms, my husband had 2 bouts of double vision, gave him 4 glucose tablets and this helped, he isn't diabetic. So in all he had 15 radiation treatments and 2 chemo sessions with lots of hydration infusions. If I can answer any more questions please let me know. The worst symptom he had was loss of taste,he's still not eating a whole lot but trying different things. His last treatment was 12/31/25.

Jump to this post

@lizzyj58
I had two instances of double vision (binocular) - I don’t have diabetes either or anything else other than this shitty cancer. Not sure if I’m allowed to use profanity here if I’m not, please feel free to strike it out.

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Profile picture for justwow @justwow

@woodsy1
I think I had asked that question once before what if I just dropped out of the study at 15 or 16 weeks and leave it at that…… that gives me two full rounds of cisplatin and that gives me the 15 rounds or 15 days of treatment no doubt 20 if I go that far….. that’s food for thought.

Jump to this post

@justwow
Ultimately it all boils down to individual choices .
You are in charge of your own body and we all hope our oncologists will steer us in the right direction and help us get through treatments with the least amount of pain and suffering. If treatments go south like mine did with cesplatin chemo then we need to make changes, pause or come up with a different plan.
Some of the more prominent cancer treatment centers like Mayo, MD Anderson and MSK to name a few are now offering more individualized treatment plans steering away from the standard of care plans of 7 chemo/35 radiation.
Hopefully others will come around and do the same especially for us H & N HPV + people.
Until then some of us accept the standard of care plan and make our own decisions based on progress as we go.

REPLY
Profile picture for justwow @justwow

@lizzyj58
I had two instances of double vision (binocular) - I don’t have diabetes either or anything else other than this shitty cancer. Not sure if I’m allowed to use profanity here if I’m not, please feel free to strike it out.

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@justwow I'm guessing it's something to do with not eating enough sugar? My husband's was at 56,a little scary though. In his case the glucose tablets helped. His taste comes and goes, some days he can taste savory and other days he likes sugary foods. Then there care days when nothing tastes good. To be fair, his treatments ended on 12/31/2025, so it's early days yet. A rough journey for sure. I hope you are feeling better at this point.

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Profile picture for woodsy1 @woodsy1

@justwow
Ultimately it all boils down to individual choices .
You are in charge of your own body and we all hope our oncologists will steer us in the right direction and help us get through treatments with the least amount of pain and suffering. If treatments go south like mine did with cesplatin chemo then we need to make changes, pause or come up with a different plan.
Some of the more prominent cancer treatment centers like Mayo, MD Anderson and MSK to name a few are now offering more individualized treatment plans steering away from the standard of care plans of 7 chemo/35 radiation.
Hopefully others will come around and do the same especially for us H & N HPV + people.
Until then some of us accept the standard of care plan and make our own decisions based on progress as we go.

Jump to this post

@woodsy1 I read in SPOHNC magazine that there is a dr in Boston conducting a clinical trial for a chemo patch. This sounds so much better than the awful chemo infusions. Hope his trial is successful.

REPLY
Profile picture for woodsy1 @woodsy1

@justwow
Ultimately it all boils down to individual choices .
You are in charge of your own body and we all hope our oncologists will steer us in the right direction and help us get through treatments with the least amount of pain and suffering. If treatments go south like mine did with cesplatin chemo then we need to make changes, pause or come up with a different plan.
Some of the more prominent cancer treatment centers like Mayo, MD Anderson and MSK to name a few are now offering more individualized treatment plans steering away from the standard of care plans of 7 chemo/35 radiation.
Hopefully others will come around and do the same especially for us H & N HPV + people.
Until then some of us accept the standard of care plan and make our own decisions based on progress as we go.

Jump to this post

@woodsy1 Just curious. Will your same radiation oncologist be following up on your treatment results/care after you drop out of the scheduled radiation treatments? Who will be overseeing you? Best of luck to you!

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Profile picture for metsgirl @metsgirl

@woodsy1 Just curious. Will your same radiation oncologist be following up on your treatment results/care after you drop out of the scheduled radiation treatments? Who will be overseeing you? Best of luck to you!

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@metsgirl
Hi metsgirl,
That remains to be seen. I haven't made my intentions known yet.
I am in what's called community care .
Its a program for veterans in the civilian sector when the VA
can't provide the necessary treatments.
The follow up is a pet scan 3 months out and will likely be provided by the
same local cancer treatment facility. So probably will stay with the same oncologist
up to that point..

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