I just finished with 30 radiation treatments, no chemo, no surgery. My SCC was at the right base of tongue, only symptom was a sore throat that wouldn't go away.
I went to two different doctors back in December and January complaining of the sore throat, I had a cold over Thanksgiving, but the sore throat wouldn't go away. Both gave me antibiotics, which did nothing. Then my right lymph node on neck started swelling too. One doctor thought it was an infection, more antibiotics, nothing changed. The first doctor scheduled me for a biopsy of the lymph node, which came back negative for SCC.
The lab guy and the doctor both said it could be a false negative and maybe I should go see an expert. I was then sent to the Moffitt Cancer Center in Tampa for a check up. They put a camera on a tube up my nose/down my throat and found the cancer at the very base of my tongue. They did a biopsy and found it was HPV 16 SCC, stage 4.
I was admitted to a clinical trial which had no chemo therapy, and only 5 weeks of radiation, M-F, twice on Thursdays, 6 hours apart. Total of 30 radiation treatments, the last of which was yesterday, 6/27/16.
I do feel like crap today, my throat is killing me, and have lost 20lbs but from what I've been reading in other blogs, I've had it easy with no chemo. I just hope it heals up quickly. I'll be reading and asking questions from time to time, thanks for making this web board available.
Oh, I'm 56, healthy (other than this!), never smoked, I'm active outdoors, and have been a faithful husband for 29 years of marriage. My wife was not impressed when I was diagnosed with HPV. She did accuse me of cheating on her as I'm an airline pilot and that's the cliche we live under, but I have not. I did however have many partners before settling down with her 30+ years ago. She found on other blogs that this stuff can take 30-40 years to show up, after exposure, which is exactly what the doctor told her, but she still doesn't believe it.
Welcome to OCF, Timmay! You have come to the right place for info and support to help you with your recovery. Radiation continues to work even after treatments have stopped. The first 2/3 weeks post rads are the hardest. Then very gradually you will begin to feel a tiny bit better.
The best thing you can do to help with your recovery is to push yourself to take in at least 2500 calories and 48-64 oz of water daily. If you can take more in, that will only help you to recovery quicker. Even 3500 calories is not too much considering what your body has been thru and how much energy it takes to rebuild itself.
As far as HPV info goes, you are definitely in the right place! OCF has worked closely with the visionary HPV researcher Maura Gillison for 14+ years before most had ever even heard of HPV. HPV is not a sign of infidelity (nor does it rule it out) so hopefully with more reading your wife will understand more of how it works to cause cancer.
Best wishes with your continued recovery!
Thanks Christine, I don't know how I'm going to push 2500+ calories a day into me, just one Boost makes me gag, I try to get in 3 a day but 10?
Yuk!
I've been doing cheese omelettes and macaroni and cheese, some creamy soups, but it hurts and seems like I always feel like puking, 24/7.
I've got a question for you, since you've been around here awhile. My wife was reading some other blogs and it appears to her that many of us guys who are getting this HPV16 stuff in our mid 50's also ride bikes quite a bit.
She thinks that maybe putting in too many miles per day/week on the bike is making our immune systems weaker, and that's why the virus is coming out 30 years after exposure. OR...she thinks it might be some of the supplements we eat/drink while riding bikes, stuff we add to our water bottles to replace electrolytes, etc. Or it might just be the fact that we drink a lot of water out of those plastic bike water bottles.
Have you noticed any correlation with the amount of HPV 16 showing up in guys who ride or run a lot?
Hello Timmay, this is a great place to come for information and support.
My husband too was diagnosed with an HPV positive Base of Tongue cancer.. Kris was 58 at diagnosis. We had been married/together for 30 odd years and both of us had been monogamous. To be honest, I have not got hung up on the HPV stuff . I know that about 90% of us, male and females , get this infection at least once in our lives. It is that common. It is just that until recently, who knew about HPV?. It does seem to show up many years after contracting the virus. To me, it is of no consequence to our marriage. I'm sure that I too have had HPV at some time, but I'm lucky. My body resolved the infection without any consequences and without me even knowing I had the virus. Did I give it to Kris? Who cares. It makes no difference. Kris was / is in the very small percentage of the population whose body did not overcome this virus. He also is in the even smaller percentage who then went on to develop a cancer from this.
Kris was not an athlete at all. Most of the people I have come across with this HPV cancer are just regular people and indicative of the general population. Some are exercise nuts, some are fairly active and some are not. I also don't think that contracting this virus has anything at all to do with supplements or plastic drink bottles. It has everything to do with how your body has responded to the virus.
Why did Kris get this and not me? Why did his body develop a cancer from HPV and mine did not. It's all down to how the body responds. He is in the unlucky group and that's all there is to it.
Please let your Wife read this. This has happened to us too. Neither of us is to blame . It is life. Kris and I continue to have a strong monogamous marriage, now of 34 years.
I hope your recovery goes well,
Tammy
Thanks Tammy, I'll be sure to have her read your post.
Oh, and you can call me Tim. (it was already taken as a user name.) The "Timmay" thing comes from a South Park character and is what one of the radiation nurses would call me when she put my mask on for treatments.
Welcome. Your case sounds very much like my husbands, except he did have surgery. Same age at diagnosis, same radiation treatment, same stage, and even same weight loss! Good news is that 2 years out and he is doing great. Good luck and keep us posted!
The bike thing is probably a coincidence. Its very good way to get in exercise without the strain on the joints like running would cause. There are a million little things it could be that trigger why some get cancer and others dont including a natural predisposition. At this time, there is still way too much to learn about HPV. There is more unknown than is know even with years and years of research.
I cant vouch for the info that you and your wife have already read. Unfortunately most website arent montiored enough so they have lots of false info stated as fact. Without monitoring, this incorrect (and potentially harmful) info gets circulated and passed off as reality. Our site has a very strict policy about posting correct medical info. We are certified that we provide correct, reliable medical info by Health on the Net. When in doubt, a good place to check if something is factual is Quackwatch. With the popularity of facebook, numerous medical groups have sprung up each one touting they are monitored. Its completely impossible. I could go on and on forever about this!!!
Heres a list that should be very helpful to you. The foods are milder and easier to swallow for patients with extra sensitive tastes and sore mouths. I also used to drink a couple of these milkshakes a day getting way over 5000 calories daily. During the recovery phase patients have trouble gaining weight even with that high of an intake. Even if you could somehow take in 5000 calories every single day you still probably wouldnt gain an ounce. It took me 8 years post rads before I gained any weight.
Easy to Eat Food List (All measurements are estimates)
Giant High Calorie Choc-Peanut Butter Milkshake (1200++ calories per shake)
3 or 4 cups chocolate ice cream (regular/full fat type)
2 tablespoons peanut butter (smooth type)
2 tablespoons chocolate syrup
1 or 2 cups whole milk (can substitute half and half to add even more calories)
1 scoop carnation instant breakfast
1 scoop high protein whey powder (check with doc if this is ok)
Blend this extra long to make it very smooth and creamy so it goes down easier. If the shake is too thick, add more milk to thin it down to what works best for you.
Tim,
Welcome to OCF. Congrats on completing your treatment. You'll still suffer for some weeks but will improve. 2500 calories is a big task for sure. Fat has twice the caloric content than protein and carbs. If you make any shakes, try adding peanut butter and other fatty stuff.
Sorry to hear about the guff over HPV. It is quite common to freeload in your body for decades, nearly everyone gets it but just a very small number get cancer from it. It can be transmitted by either sex.
Good luck, don
Welcome Tim - tap into the people on this forum. I am almost three years out of treatment and can tell you that you will make it. Stay the course. Do the shake Christine recommended that will give you a start. Count calories and make sure you get plenty of protein. Talk to your doctor but I used 1 mg per pound of body weight. I did the shake 2 times per day and still use it everyday.
Thought I'd come back with an update: finished radiation June 27, now waiting for my PET scan which is scheduled for October 3. In the weeks after radiation I couldn't eat much and was pretty weak and tired all day.
Now it's almost 3 months later, I feel pretty healthy, energy wise. I did end up losing over 30 lbs but I've put 10 of that back on in the last month. My mouth and throat have stopped hurting and the nausea is gone, so I can eat just about anything except spicy stuff, that has double the 'burn' that it did before treatments, and I LOVE spicy foods, (Indian, Mexican, Greek).
My taste buds are shot as is my saliva production. The dry mouth is the worst thing I have to deal with now, and waking up every 90 minutes for another sip of water all night long, and having to get up to pee every 2-3 hours sucks too!
Does that ever go away, or am I going to be carrying a water bottle with me everywhere I go for the rest of my life?
I can still feel a little pain at the base of my tongue where the tumor was, I hope it's not coming back already! I guess I'll find out for sure after the PET scan in a couple weeks.
Thanks for your help and kind words.
Im glad to see you are doing so well!!! The dry mouth and constant bathroom trips in the night arent fun but in time they should both lessen. The dry mouth is unfortunately what hangs around the longest. Many of us become water bottle carriers for life after rads. Hopefully yours will still continue to improve and you wont always have to have a bottle by your side at all times. Same thing goes with your sense of taste being off, in time that will get better until almost everything is the same as before rads or fairly close to it.
You have alot of healing to do still. If the pain continues make sure to tell your doc about it. For most of us, we have had pains come and go during treatment and recovery phases. Hopefully its nothing serious, just your body adjusting itself.
Keep up the good work in your working on eating. You must be doing excellent if you have been able to put on a couple pounds already. Good job!!!
Thanks Christine, I have been eating a lot of pizza, hotdogs with beans and French fries, gyros, and drinking a few beers on Sunday afternoons and Monday nights now that the NFL is back in action, I think that's what got the weight back on so quickly.
I've also been strong enough to get back on my bike and ride with my crew in the mornings. When I showed up 30lbs light a month ago one of my good friends said he didn't recognize me, he hadn't seen me since I stopped riding in May. Then on the ride he complained that there wasn't much of me to hide behind and draft any more!
Tim, so good to hear that you are doing well so soon after treatment. It looks like you are eating a variety of food, that's so encouraging to those waiting to go into treatment.
Well done! Please continue to keep us posted.