Just discovered this site. Very nice. I am 69 year old male and am 7 weeks out from chemo/Rad for base of tongue squamous cell with one node positive. Completed 7 weeks of daily radiation concurrent with weekly does of Cisplatin. Last RT was October 16. I seem to feel a little better some days and I try to resume daily activities. I am cold most of the time, have a tingling sensation in my arms and back, sleep poorly w/o a sleep aid, mucousitis, dry mouth, and a dizzying effect when I turn over in bed. All of these are tolerable to some extent except my ability to swallow is completely gone. Swallowing was painful before the start of treatment and by week three I could no longer bear to swallow anything. I have a PEG tube that was recommended by all the doctors and it has been my exclusive source of nutrition and hydration now for three months. My next followup with the RT doctor is next week. I am really anxious to get back eating again, but nothing will go down. What should be my expectations and likely advice from the RT doctor? Any thoughts will be greatly appreciated.

Mr Mike

Mike,

First off congrats on finishing this Tx! I assume your cancer was HPV+?

You are officially in the Recovery Phase which can last every bit of 2 years so please be patient.

You will continue to have good days mixed in with some bad ones but slowly the good will completely replace the bad. Again, it takes time.

You need to have your TSH checked. Your radiation may have permanently damaged your thyroid which can cause the cold feeling. A pill a day can mostly solve that but you need the blood work first.

The thick crap you are producing will go away sooner than the dry mouth and taste issues. I didn't stop improving in the taste/saliva area until 24 months post Tx and I estimate I'm back to 90% of pre Tx levels.

The tingling and dizzy stuff may be the lingering effects of the chemo but do discuss these with your docs asd there are other causes of the same symptoms.

Many people on the PEG "forget" how to swallow and sometimes the radiation can also cause swallowing problems. There are many things that can be done to correct this, like throat stretching, etc but again you really need to make your docs aware of this asap.

Re the nutrition, I tried to consume 3000 cals and 48 ozs of water each and every day post Tx. Dispite that, during my first year post Tx I didn't even gain a pound of the 30 I lost during Tx. Tells me how much my body was working to heal itself from that crappy Tx!

Another thing to be mindful of post Tx is some develope depression from mild to that requiring some intervention.

Congratulations on completing your treatment. Radiation continues to work just as long as your treatment lasted, so side effects you had during treatment will still occur, not including long term side effects. Some which last for weeks, months, and years after treatments, so it takes time, and everyone is different, including any underlying medical conditions that prolong healing. Most of what you describe are pretty common in the recovery phase, but the dizzy spells could be from pain meds, sedentary lifestyle or something else, and as David mentioned, losing your ability to swallow can occur, so exercising the mouth, dry swallowing is important, and see your doctor about that too. Watch out for secondary infections with Mucocitis..bacterial, fungal, viral, which need to be treated difftently, and can go septic, especially from ulcers in the mouth.

There is such a thing as Chemo Related Fatigue, CRF, that can last for years, some which we have no control, but we do with some to increase our QOL. One thing to help is to correct what we can that contributes to CRF, which can be many, and as mentioned, is to have your TSH levels checked. Another is a CBC to see if there is anemia, which can be corrected by irion, B12, blood transfusion, or epogen shots, depending in the cause and type of anemia. This same CBC will show your glucose levels, which may indicate diabetes or pre- diabetes. An A1C test will show the average levels for the past three months. Have your testostetone levels checked, as well as your vitamin D levels, which can effect your energy. Light exercise is important for circulation, mood and increasing the appetite. You mentioned tingling in arms, which can be neuropathy. exercise may help this, vitamins, medications, accupuncture, and it's best to see about it now, begore its prolonged , but sometimes nothing may help, in some cases. Maintaining adequate nutrition and hydration is important for healing, feeling good, and prignosis. Sometimes depression sets in, and that may require speaking with a professional, and possibly medications. Speaking of medications, pain can effect your QOL, inhibit healing, so speak with your doctors about your pain management.

Lastly, have your vision and hearing checked. The toxicities from chemo, especially Cisplatin, other platinum based chemo's, can effect both.

Good luck ith everything.

Mr. Mike - I add my congratulations for your successful completion of treatment. Hopefully this will all soon become a distant memory as it has for many of us.

David and Paul have both given you the best advice possible, to which I can only add that if you haven't already you might ask about seeing a swallowing/speech specialist. I found that in addition to multiple throat dilations, a few visits to a swallow specialist that included some x-ray tests and then exercises I did at home were invaluable.

Please let us know what your doctor says, and welcome to our OCF family!

Welcome to OCF, Mike! Congrats on finishing your treatments! Its not easy but you did it. Now you are in recovery mode. It can be a long road too full of ups and downs. Radiation keeps working even after you have finished treatment. Doctors say it takes one month of recovery for every week of rads. It can take a full 2 years to fully recover.

As far as swallowing goes, be careful!!!! you do not want to attempt to drink something and end up with it going into your lungs. Please talk with your doctor and have them set you up with a swallow study and a speech/swallowing pathologist. Swallowing needs to be done safely.

Best wishes with your continuing recovery!

Thank you All,
My throat has healed a good deal and I can perform the swallowing function without too much pain but it just regurgitates. I called the radiology doctor and have an appointment for next week and swallowing will be the focus of my visit. I did a swallowing study prior to treatment as a baseline. I will also mention the other post treatment symptoms, all of which are uncomfortable but tolerable. On days that I don't have light chores to do around the house, I walk a couple of miles. My blood work checked out OK about 5 weeks after treatment. I can deal with all the side effects that I am experiencing but want to work towards a home cooked meal someday. I am a pretty disciplined guy and want the Docs to prescribe some regimen of exercises and care for a balanced and speedy recovery. I recognize the time frame may be longer rather than shorter, but if I am making progress I will be content. I lost about 27 lbs and may have to increase the calories to prevent more weight loss. I was in fact HPV positive, which seems to be ubiquitous these days. In fact those that are HPV positive enjoy improved rates of long term cure.

I am sitting here typing with a blanket draped over my shoulders thanking each of you for you kind words of encouragement. I will keep you posted on my progress.

Oh, BTW, most of my beard is gone and my hair thinned. Permanent or temporary???

Thanks,
Mr Mike

Hi, Mr. Mike
my husband's beard is permanently gone only from the area on his throat where the heaviest radiation was. His chin-whiskers have returned. His hair was pretty sparse before this whole adventures, and is more so now - but that might just be genetics.
I hope that you will be able to get some help with you swallowing soon.
Be wishes!
Maria

MM - I too lost the beard under my chin and it basically hasn't come back nor do I expect it to. But the hair on my face is mainly back and I just keep a beard now since it still isn't pleasant to shave on the side where I had my surgery.

I also lost about an inch of hair growth on the back of my neck. But no other hair loss I can detect.

Hang in there, buddy.

Some of it may be permament. I don't shave as much as before, and definatly not where there was max rads. The nape of the head hair is gone, and hair thinned from chemo too. If you need to shave, consider an electric shaver cuts, possible infection.

Michael,

I am 3 1/2 weeks out of treatment. About 2 weeks ago I started to see a swallow doc. See was tierd of seeing people months after tretment when the loss of function was gone for good. She wanted to start seeing patient 2 week post treatment. We started with a barium swallow test and a swallow strength test. She found the I lost over 1/2 of my strength in just 4 weeks of limited use (PEG Tube).

She gave me neck exercises and messages to do. Then she started to hook me up the the machine that measures swallow strength and make me eat and drink.

In 2 weeks my strength is now back to 90% and I am eating 90% of my cal per mouth, solid food not boost.

To make a long story short. A good doc can see if you have any serious problems and then push you to improve fast. I will graduate from swallow school by Christmas and I will have this hose out of my belly by the end of next week.

Good luck and get help if you can.