About to start radiation therapy for inoperable SCC of the palate. I think.

[wiley]

Anybody been thorough radiation therapy for a throat, esophageal, mouth, tongue SCC radiation? Note: I have serious dysphagia that requires a retainer to swallow from the last two surgeries. A year later another primary cancer pops up.

[Dennis Donovan]

1. I haven't, but good luck today!

You've got this!

[Rhiannon12866]

2. I haven't, either, but I also want to send my support.

My Dad did, however, and it made swallowing really tough and he didn't feel much like eating anyway - he was never a big eater. I used to make him potato soup that he liked. But his was in 1990, so I imagine they have made great strides since then. Please let us know how you're doing.

[femmedem]

3. I haven't been through it but wish you well.

Hoping your treatment is successful and not too difficult.

I'm having a biopsy next week for likely SCC on the bridge of my nose.

[Trueblue Texan]

4. Take good care of yourself...

Rest when you can, nurture yourself. Good luck and good medicine.

[sinkingfeeling]

5. Yes, went through it 9 years ago. Unfortunately, I Can't write about it

at this time. Spending 24x7 nursing and caring for my very ill dog.

[wiley]

10. Dog love!

Hope your dog gets better. He knows you are there.

[sinkingfeeling]

6. I highly recommend you locate a SPOHNC * chapter before you begin your

treatment. Even if, like me, you think support groups are "not for me", everybody there has been through the treatment you're about to begin.
First, listen to any recommendations doctors or dentists may make about your teeth, feeding tubes, or anxiety.
Second, tell them about anything you experience during treatments. You may have blisters or burns internal or external to your throat. Or if you get panic attacks during the radiation.
The members of SPOHNC can fill you and your caretaker in on every 'trick' they know to get over problems. Mine has a library of books, including cookbooks geared to oral cancer, tons of articles on new procedures, a directory of specialists, like swallow therapists, and even samples of oral products.
Last, keep a positive attitude and know you can get through it.

* Support for People with Oral, Head, and Neck Cancer.

[wiley]

7. Thanks All!

They seem to be very resistant to hooking me up with such a group. I'll keep looking!

[alfredo]

8. How many treatments?

You will be ok for the first two weeks, then you start feeling rather funky.

I had SCC and they put me through 35 Radiation treatments, and 2 Chemo. Fun fun. My cancer was from the HPV virus.

Your skin will need something like Aquaphor. See if you can get it on prescription.

Your salivary glands, if not already savaged, will be by the Radiation, so carry water around with you. Mouth Kote is really good at easing dry mouth.

Good luck, and stay focused on getting through this.

[wiley]

9. Whoa.

Thanks so much. They are definitely not doing chemotherapy. I think that will lessen side effects. Pretty sure they are doing 7 weeks or 35 treatments using very focused radiation. I already have a speech pathologist and an amazing oral surgery/dental team that made me a retainer to be able to swallow - but then they said I would be in such pain and agony from mouth sores, burns, pain, nausea, really thick mucous that all three of them said I would not be able to swallow anything for a few weeks a least. They also described the reasons why they believed that anti-inflamatories such as thalidomide, NSAIDS, or even steroids would be prohibited.That specific theory has never been proven or even supported with clinical research.

My taste buds are great. I just can not swallow NOW without this retainer. I had three teeth implants done last week.

I'm supposed to have four procedures done on the same day next week and I have said no until they can justify why that is necessary. I have severe sciatica and neurological damage so unless they put me out cold 2 hours is an hour too long for anything. Every time I can them they say a nurse or doctor will get back to you but they never do. So I just keep sending messages to staff I've already seen and the nurse or doctor's scheduler will just ask if I need to reschedule. Answers would be nice!

They estimate 6 hours lying still just for the simulation. Then a PET scan. Then an MRI. Then molding a mask and beam testing? Is that even humanly possible?

A thirty year old buddy of my also had an HPV16 marker positive SCC cancer in his mouth. That's usually a good thing but the number of young guys of whatever sexual identity/orientation are my new friends is staggering. Anyway, they stopped him five weeks in. Like me and all their patients, they will not put in a tube for food beforehand. He had a heart attack, evidentlly something that happens more often than we know in radiation therapy.

Imagine if they all had gotten their HPV vaccinations. There is a new one out I just finished and supposedly it does help. The number of girls with HPV related diseases has really decreased and I forced my sons all to get 3, not 2 shots.

Anyway thanks alfredo for the info. This is pretty scary stuff. It's really generous of you to share your experiences. Thanks for the tips!

[alfredo]

11. Come Feb 25 my tube will have been in 2 years.

At first after treatment I could barely talk and only could wet my whistle because swallowing was so hard. I couldn't taste anything for months, but now I can eat a variety of foods. The damage to my salivary glands makes eating meat hard unless I puree them. Be sure to carry water with you.

I get a CT scan Monday.

Get Aquaphor and use it because it won't interfere with radiation. It's great for dry skin.

After the first two weeks, make sure you have a driver. You will feel very weak and unsteady. A walking stick comes in handy. Always have a barf bucket nearby. The barfing is not violent, it just comes out.

Stay hydrated. Chances are you will have to take synthroid If the radiation impacts the Thyroid. The pills are small and are sweet. Endocrine candy.

Good luck.

[wiley]

12. Thanks again!

How long after radiation were the side effects really bad? Spontaneous barfing? No one has said a word about that! Aquaphor and what did you say to spray in my throat? Also, why do you still have a tube if you can swallow? After the surgeries I can barely swallow pureed foods although I will choke down stuff when I'm angry. Some will come out of my nose, of course. O have a friend that has volunteered to drive me all the way there and back every day but I know this guy pretty well. A Godsend to be sure but he's much older and often falls asleep when we see each other.

[alfredo]

13. Mouth Kote is what i use.

You will be prescribed anti nausea medicine. It helps. My symptoms have taken longer because of my age. Rebounding from treatment will be faster, the younger you are. I’m 72 years old. The barfing is not the gut wrenching morning after, but an easy expulsion. YMMV.

I still have the tube because I can’t get enough calories by mouth, but I am making progress. They will remove the tube when I can eat normally. I can’t chug liquids like I used to, and milk is difficult.

It hasn’t been bad just a bother.

Keep up a good attitude, be wary of signs of depression. They have me on a small dose of Zoloft.

I’m generally happy with my state.

[wiley]

14. You are an inspiration!

Thanks for all your help! My story got very interesting all of a sudden. A friend at the NIH did an extensive research query on proton therapy and sent several thousand pages of studies on the use of this dramatically improved radiation technique for many cancers! Guess why every doctor in every state isn’t using it? Politics and greed.

Im having a real quality PEG put in next week the right way - endoscopically. Then I’m having five weeks of proton therapy in New Jersey. Depression is always an issue when you realize that people that don’t vote in every election have caused our current situation, and that every day we don’t fight for those that are disabled or chronically ill or working sick and help them to vote everyone becomes sicker!

But the cancer in our Democracy grows. Always bring as many friends to whatever medical appointment you ever go to and let staff know you have friends and advocates. That care about you. And that vote! Thanks Alfredo and everyone else that answered. We should start a proton therapy and online radiation group here that helps people advocate as well, no? Much love to all!

[alfredo]

15. Thats good news.

Now if it only enhance hair growth, settles your stomach, gives you silky skin, and kills cancer cells it would be just perfect. For now killing cancer cells is enough.

Glad you found a good reason to go to New Jersey. 😉

[wiley]

16. Update on treatment

After a very long and contentious negotiation period where the head radiation oncologist finally realized I can’t swallow without the retainer - he actually said to me you should have told me - they agreed the tube and the pencil therapy with protons was required. Completed my second treatment yesterday. Dry mouth and mucous, really sore muscles. Oh well. We’ll see what happens. Another friend that just completed treatment with standard radiation and chemo said he was exhausted after treatment two. But he got chemo and standard radiation. I’m just working until I can’t I guess. So many teenage boys there being treated like 19 and 20. Wow.

[alfredo]

17. Yes, I had both radiation and chemo, for SCC of the tongue and neck.

It is going on two years since ending my treatment. Are you getting a PEG tube? You will probably need one.

The first two weeks of radiation is a breeze, but after that you will start feeling weak. Just go ahead and cut your hair short, and see if you can, get a script for Aquaphor for your skin.

Carry water, and a one liter graduated container. You will puke, but not those gut twisting “ too much” pukes.

Milk it for all can.

Good luck.

[alfredo]

18. How are you progressing?