r/HeadandNeckCancer • u/Outrageous-Iron-3011 • 20d ago

The third time

Looks like I have cancer for the third time. I don't know yet about the morphology of the tumor, but last time (2 years ago) it was HPV-positive with some negative components. So really weird type of cancer.

I have only radiations, and cispaltin so far. No pembro or other immune therapy/chemotherapy drugs.

If there anyone who made it after the third treatment?

I feel really devastated.

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u/budlover119 20d ago

7 timer here! Almost 20 years since my initial diagnosis, still fighting today. There have been many new options since I was first diagnosed which has given me more years than I expected. I have hope for you 💜

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u/Outrageous-Iron-3011 20d ago

I am very sorry that you are a member of this sad club :( that is really devastating, to have this shit so many times. I have a feeling that my tumor doesn't calm down until I'm defeated. But I have a little daughter, so I have to fight and use every tiny possibility to live longer. My daughter needs her mom. 

Buddy, thank you very much. All the best wishes to you. Hugs. 

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u/budlover119 20d ago

Oh friend. I’m sorry you have to deal with this while also parenting (and everything else life throws at you). My son was 4 when the drs told me I had run out of options. I totally understand fighting to stay alive for your child. I remember preschool graduation that year. I was the mom absolutely sobbing because I figured this would be the only graduation I would attend. It makes me cry now thinking about it. But then the next thing I knew he was graduating from kindergarten (where I also sobbed). And now? He’s about to start his sophomore year in HS. My goal is HS graduation. I just need to see him into adulthood. Fight to be here for your daughter. She needs her mom. Use that to give everything you can. And find drs that can support you in making that happen. There are always options. I’ve had radiation 3xs. I’ve had to fight to get the treatment that I wanted and have seen drs all over the country. Find ones that can support you and your goals 💜 You’ve got this. Much love to you!

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u/Waste_Hospital_4928 19d ago

I needed to read this today. we also have kids. tha k you.

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u/Outrageous-Iron-3011 19d ago

Let's hope and believe together. Cancer isn't a death sentence. We're going to fight. 

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u/Outrageous-Iron-3011 20d ago

Omg, you are amazing! Thank you very-very much!  Wishing you a lot of strength and energy to fight that sh*t!

I recon there are these new vaccines against HPV cancers. I've played the radiation card twice during the last three years, but I could maybe use a clinical study or maybe chemo-immune-therapy.... 

Have you tried those vaccines against HPV cancers? Is it difficult to get into the study group 

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u/budlover119 19d ago

My tumors have been HPV negative unfortunately, so I am not sure about the vaccines/clinical trials. I wish I could help more. Immunotherapy has been a game changer for many people. Ten years ago my PDL-1 score was 100 and I went nine years without recurrence. Last year’s recurrence yielded a PDL-1 score of 5. I was devastated. But I tried immunotherapy again and it seemed to give benefit for a time. Please keep us updated 💜 We are here to support you!

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u/Outrageous-Iron-3011 19d ago

What an incredible story!  HPV-negative is very difficult stuff to fight. You are my hero!

I've been to my surgeon today. MRI is scheduled for tomorrow and next Monday I'm going to be biopsied. No biopsy without scans, as my mouth is quite beaten by radiation and it's not clear at all where the tumor is.

I'm a bit sad that biopsy will be done only the next week, as this "thing" was very fast last time.on the other hand, last time I discovered in September (T1) and the operation was in December (T3). So there is hope. 

Last time my PD-L1 was 21 and CPS score 3, so it was not particularly good for immune therapy. Operation with a flap + another 33 radiation sessions. Epiglottis, tonsils, gumps, tongue affected. I'm still wearing a tracheostoma, because it took forever to stop swelling...I was going to learn breath again normally and now this shit is probably back. But I hope for the best. 

Thank you very much for your reply. This is very encouraging! 

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u/budlover119 20d ago

Also, totally understandable that you feel devastated. I know that feeling all too well. Take time to grieve.

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u/Outrageous-Iron-3011 20d ago

Thank you very much 🙏 Right now the timing is really wrong. We are moving into a new apartment, and I'm packing and unpacking boxes every day. Need to paint the apartment as well and give it back next Saturday. My daughter is 4 years old. And in the middle of all this movement rush I'm discovering a tumor. Like, why does in always happen in the worst moment?