Anybody get through 35 radiation treatments for tongue/palate SCC HPV-16 type?

[wiley]

Treatment 17. They keep telling me that side effects will get worse. Just to warn me. This already sucks very, very badly. Uncontrollable mouth sores that blister, pop and bleed. The pain is so bad I scream and am constantly crying. I pull thick rope like threads of blood and mucous out of my throat because I can't spit. They say it's all normal.

have no idea how anyone gets through this. Would have been nice if the told me NOT to use Aquaphor hours before treatment. Cause a serious rash and INCREASED radiation intake. I'm going through a bottle of Lidocaine daily, and docs said triple the pain meds. I can't even swallow water. So after each treatment they give me an IV and a two hour water infusion through the tube.

Not sure I will get through four more weeks of this. I can't sleep either. Or think!

Medicare approved my formula and syringes though! I add several tablespoons of avocado oil to and four TB of honey (not raw) to each can to get them to 950 calories each. 325 + 240 + 390 Mix really welleven warm up if necessarythen infuse slowly over a 45 minute period. The 500 mil warm water.

This week I'm going to nail the oncologists on exactly what criteria he uses to say I'm responding well.

[PoindexterOglethorpe]

1. So sorry.

What you are going through should not happen to anyone, but it does.

All I can say is that I hope it gets better.

[democratisphere]

2. Deeply sorry for your hell on Earth! Hoping all of your treatments are

successful wiley!

[Laffy Kat]

3. Oh, Wiley, that sounds horrible.

And I have nothing to offer or say, except I'm so, so sorry and I hope you find the strength to get through. Not being able to sleep to escape the pain, oh God. I don't even know you except as a fellow DU-er, but you will be in my thoughts.

[Solly Mack]

4. Oh, wow. I'm so sorry. Mouth cancer here, but nothing like that.

Pain bad enough to get fentanyl patches. Did the mouth cocktail (included lidocaine) to kill the pain inside my mouth and throat.

I truly hate that you're going through this.

[JNelson6563]

5. I'm so sorry to hear this.

I wish I could do more than send hugs and encouragement!

[barbtries]

6. i've heard the treatment can be worse than the disease,

hoping you will get through it and come out cured and healthy on the other side and know it was all worth it.

[bucolic_frolic]

7. We're pulling for you, Wiley!

You have to trust the doctors, they have a lot of training and expertise, and it's good to ask them questions.

When immobilized, in pain, in a difficult spot, think good thoughts! Fond memories, your best relatives, moments that relax the body and mind. Music can soothe frayed and frightened nerves. If you live in an area of sunshine, or spring has brought more light, I would even try sunglasses to lower visual stimulation and relax facial muscles. Focus on listening more than other senses right now.

[Bernardo de La Paz]

8. You will persist and you will triumph. . . . . . nt

[Silver Gaia]

9. Willey, my husband did it 4 years ago.

He made it through and is still cancer-free. So, yes, you can do it.

Questions: You have a feeding tube, right? Do you have anyone helping you at home? Are you doing concurrent chemo, too?

Use aloe on your skin along with whatever they gave you to protect your skin. You are going to feel sunburned inside and out. You already do, sounds like.

I remember they gave my hubby some anti-anxiety meds and that helped him sleep.

I know what hell this is. Not first hand, but I was the caregiver, so I know. Please don't give up. Do every single one of those treatments. You WILL make it through.

Dont hesitate to ask if there are any questions we might be able to answer for you. My heart goes out to you. Just know that you are not alone and you can do this.

[TNNurse]

10. This sounds absolutely miserable.

I had breast cancer and only 5 treatments each 3 weeks apart. I lost 50 lbs, painful diarrhea, passed out in the bathroom and got a ride in an ambulance for IV fluids. By blood pressure was 60...the top number. After the 3rd dose I was literally afraid another one might kill me. I would not eat because the diarrhea was so painful.

None of this sounds as bad as what you are going through. Yes, I needed and used Magic Mouthwash. I did also have radiation burns but clearly not as awful.

I wish I could say it will get better and you will be OK but yours is such a different experience. I hope you have the support that I did. Are there other patients near you who can share a similar experience??? It does help.

Please know how many people who have not met you are thinking about you and hope to hear from you. Even if you just want to bitch and moan we will read it.

I tell people that I have been the recipient of "thoughts and prayers", they did not cure me, but they did bring comfort. Surgery, chemo and radiation cured me. But knowing people care does help.

[alfredo]

17. Magic Mouthwash is so good, and later use Mouth Kote.

[mahina]

11. Hey man. I dont have any useful information but want to reach out and send you some aloha and

Some good videos that are just entertaining, to pass the time. The time will go by, and you can get through it, though it sounds extremely awful.

Here’s goofy Brad the cute funny Bon Apetit test kitchen guy

Here’s Weldon Kekauoha’s concert at the Hawaii Theater. Hi*Sessions youtube channel has lots of great Hawaiian music.

Sending you aloha and love brother. (Sister?) I’ve never met you but I send you love.

[alfredo]

16. Music helped me through the ordeal.

[GreenPartyVoter]

12. I am so very sorry!

*gentle hug*

[sinkingfeeling]

13. I'm so sorry. Yes, I was scheduled for 35 radiation treatments for

SCC stage IV on my tonsils, but got a reprieve and only had 33!
It is awful. Everybody has some or all of those side affects, but each individual reacts differently to the radiation. I did not use a feeding tube and was able to drink Ensure type stuff throughout. I had a couple of bad burns on my neck that left scars and I felt the worse the week after treatments stopped.
You will get through it. I have been cancer free for 9 years.

P.S. You should check if there is a SPOHNC chapter near you. The members have all been in your shoes and can suggest many tricks for dealing with issues. They will help you when you need it. I still attend meetings and try to help those just starting the journey.

[wiley]

21. Finished Treatment 22!

The neck burns are incredibly painful. I think the fluconazole really helped the tongue sores, as they seem to have been fungal. I bring up quarts of mucuous at a time. No kidding! Really glad you have been cancer free for so long! The feeding tube has been very useful. I just have to accept that for at least the next 90 days I will not be ale to eat enough by mouth to sustain myself. From now on I'm getting all prescriptions from my NY doc, as NJ doctors can't prescribe what they feel the patient needs anymore. Thanks!

[packman]

14. Throwing some adages your way

This too shall pass
Tomorrow is another day
One day at a time

I've had my bout with cancer, not your type, and went thru my own bit of hell walking on glass shards of pain. I grew up in the John Wayne days when a man is supposed to suffer in silence and not cry - bullshit. Let your pain be known, but always, ALWAYS, know that it will someday, sometime be less.
Word of caution - those cancer drugs are tuned like a fine machine. Don't go mucking them up with other home-brewed stuff without checking with your oncologist.

[alfredo]

15. Damn! sorry to hear you are having such a tough time.

Last edited Sat Apr 14, 2018, 07:37 PM - Edit history (1)

I had 35 to the base of my tongue and neck, so my mouth didn't suffer like you.

I found good music through headphones, and a cloth over my eyes takes me away from the pain. The more hypnotic the music, the better. I usually fall asleep, and that's the idea.

After radiation you will feel improvement every week. That's something to look forward to.

Stay strong, and say to yourself, "I can deal with it." You can.

[applegrove]

18. So sorry. Get out your pain and frustration and fear by crying whenever

you can. Sending vibes your way.

[PennyK]

19. It does sound like hell

I had chemo and radiation (and a mastectomy) for breast cancer, and as unpleasant as it all has been (continui9ng two years later with all sorts of side effects and partial baldness), I know it wasn't that bad compared to what others go through. So sorry you have to experience all of this.

[wiley]

20. OMG you people are so wonderful!

Thanks to each and every one of you. The Magic Mouthwash thing? The said that was just a tiny amount of the lidocaineI was given. It works for about an hour. I'm demanding fentanyl, which at least I know puts me to sleep. They have me on so much klonopin I forget who I am! I don't get it. I was supposed to be the easiest case in the world. I have three friends including a nurse that are my caregivers. They all are not comfortable at all with these side effects. It's trying. I have no problem crying or screaming in public in pain. Everyone being treated there is also a man and none have any complaints. Well, many, many blessing to you all.I listen to Box of Rain often, wriite for Hunter's dad as he died, unfortunately of cancer.