Post Treatment Questions: low RBC and dealing with throat pain

In 2008 I was officially Stage IVB T2N3M0 on left tonsil caused by HPV and one of my 3 infected lymph nodes was over 7cm and that is not a typo. I had 35 rounds of radiation which amounted to 70 Gy and 3 rounds of the platinum-based chemo Cisplatin and had no surgery whatsoever as I got a second opinion that said I wouldn't need it and were extremely confident I wouldn't need a feeding tube either and they were correct, but it was not easy at all. Since I did not want to lose weight, it took me usually 2 hours to eat and had to blend a lot of food and had a box of Kleenex next to me as it was very painful to swallow. Took about 3 months from my last radiation treatment to have no pain except for spicy food which took longer.
I did research then and found in an England Journal of Medicine that honey could help soothe the throat. I did shots of real honey not the ones you find in your local grocery store which most all are synthetic and don’t have the same benefits. It definitely took some of the edge off for me. I would use Manuka honey which you can find on Amazon that scores UMF 10+ and MGO rating of 100+ is considered potent enough for medicinal use- the higher the rating, the more potent, and of course, the more expensive, the honey.

You will get better. Hope this helps. Good luck.

I had 35 rounds of radiation for a total of 70Gy and 3 rounds of cisplatin chemo for tonsil cancer back in 2008 and I did research then and found in an England Journal of Medicine that honey could help soothe the throat. I did shots of real honey not the ones you find in your local grocery store which most all are synthetic and don’t have the same benefits. It definitely took some of the edge off for me.

I would use Manuka honey which you can find on Amazon that scores UMF 10+ and MGO rating of 100+ is considered potent enough for medicinal use- UMF ranges from 10 to 25, the higher the rating, the more potent, and of course, the more expensive, the honey. - web

You will get better. Good luck on your journey.

Hoping you received some good news from his pet scan!

Hello Rakga, I had very similar treatments in 2022. My red blood cell count took over a year and a half to reach very close to the bottom of the normal range last month. My increase was steady, but slow. My creatinine level is above normal, and the docs say that the excess stuff in my kidneys inhibits the hormone that stimulates red blood cell production. So, I guess I would say that it was a slow, but steady increase for me.

I was on a feeding tube for 4 months after treatment ended because my throat hurt. I started out by eating a lot of soups. I couldn't eat much food at a sitting. Stuff that wasn't soft hurt my throat. It slowly got better. Dry foods like breads are still tough. A couple of my salivary glands are shot, but I notice a slow increase in the amount of saliva in my mouth. I don't have much taste any more, but I enjoy food and I work to find ways to eat. I might put pieces of banana bread into a bowl with milk. As I said, soups were my staple for a few months. I gargled with warm salt water a few times a day to help with throat pain.

I had significant hearing loss from treatment. I got hearing aids that do a good job. It didn't take long to get used to them.

Good luck. It's not easy when it's difficult to do what you used to do. But he will discover what works for him going forward.

HI,

It took six to eight months post Radiation and Chemo for my red blood counts to be back into normal range. most of them were hideously low. Just takes time. That was all the Oncologist told me, and he wasn't too worried about it. He seemed more pleased that I was able to tolerate the treatments as your husband has done. I had seven chemo ( cisplatin) over seven weeks, and 35 radiation for stage three laryngeal cancer. I also had to wait three moths post treatment for Pet scan. This seems to be standard practice I have learned as the radiation hangs around a while in our bodies and affected areas.
I lost forty pounds during treatment, I was probably fifteen to twenty pounds overweight at diagnosis. I ultimately gained about 25-30 pounds back, it did take some time. I also at a LOT OF ICE CREAM!! Sooths that throat like no other. Also sugar free yogurt really soothed me, Vitamin water acai blueberry flavor, sugar free also really hit the spot. I still eat the yogurt and drink the V water every day.
I ended up getting a pain med prescriptions so I could eat meals after feeeding tube was removed. I'd take it half our/ hour before eating and it helped. Didn't speed up my meals as dinner took at least an hour to get down for me, but, it did enable me to eat more as I had less pain. After a few months, I was able to stop taking those medications. Seemed to me that they really helped as my throat due to time, and use was wide open. Don't get me wrong, I still choke, spit out food, cough and unintentionally spit food acroos the room at times. I still carry a hand towel/ washclothe wherever I go now that I can leave the house on my own. I found it quite helpful as it eases the cough ( which was extreme for many months in my case) and also handy to clean up any drool, food spit out, any mess that I made as if I were a baby. So we go!!
Best of luck on the 24th.....My Oncologists both told me, " You did the treatments, as far as we are concerned we expect to find no cancer" they did not find any! That was May of 23. I had another PET done end of January this year as I was still battling so many symptoms..I thought it may've come back. So far, so good, I am healing, and maintain a positive outlook, exercise as/ when I can.....slowly but surely getting better and better.

GOOD LUCK!! STAY WELL!

The pet scan results are in, had appointment today, he said no sign of anything, treatment was excellent! So now he’s still trying to gain weight, the dr thinks he’s still not taking in enough calories. His appetite isn’t back but he eats. Going on four months and he still hasn’t gained what he lost.

Hi again, so we have been encouraged by my husband's ENT surgeon, (we have decided that we no longer what to work with his current oncologist for various reasons) so his ENT surgeon has stepped up to the plate to lead his recovery) to seek out possible other alternative treatments that are not offered here in Hawaii (the resources are extremely limited including medical oncologists!) We will be traveling to Sacramento where we lived for 32 years prior to moving back to Hawaii and seeing an ENT surgeon at UCD Med Ctr. There is a possibility he may want to consider do a debridement on his throat to remove any necrotic tissue. I am nervous that this maybe something that will need to be considered and he is barely started healing, Has anyone had a debridement done?

This sounds like a good plan. Although the travel is no fun when there are health issues, you must do what you must. No one is a better advocate for his health than the both of you. UCD is great.
Others here have had debridement done. I was fortunate to be able to just exercise and work through my issues, although it took years. Perhaps I just got so used to the struggle that it just became normal. Good healing.

Took me just about 2yrs to get mine back. Mine might have been because it was mostly muscle that I lost as I am an avid weightlifter.

My husband’s pet scan was good , now have an appointment with ent. He still didn’t gain any weight and he’s eating good and in between too. The dr said to see a GI specialist maybe there’s a reason he’s not absorbing nutrition. Have you heard of that? You seem to know a lot so thought I’d ask. Thanks.