My wife completed 35 XRT radiation and 4 Cisplatin treatments in July 2005 for left oral tongue cancer, T2N1M0, after partial glossectomy to remove the tumor.

She underwent additional tongue surgery at the tumor site in December 2006 to remove "hard tissue" at the original tumor site which turned out to be, to our great relief, scar tissue.

Because the tongue had already been irradiated, the tongue has never really healed fully post the second surgery. As a result our ENT wants to see her monthly.

Currently she is in pain at all time. She remains on Fentynal, 12 microgram dosage, although we got this down from the 100 microgram dosage post radiation in 2005.

Because of the pain she has difficulty eating and she takes morphine, 15 mg dose, before eating, twice daily. Swallowing is still so so and sometimes she chokes on food even though she had eight dilations of the esophagus in 2005-2006 while she had a peg tube.

About a year ago she was experiencing wild swings in body temperature and very severe leg cramps.

We went to go see an internist who did blood work and checked TSH levels. The thyroid gland had been affected by the radiation treatments and she was prescribed, Levothyroxine, which was adjusted to 100 mg per current daily dosage. Symptoms improved for a while as the TSH level according to follow up visits with our internist had been brought back to within normal limits.

For the last two months however she has been complaining of extreme tiredness, wild swings in body temperature and again leg cramps.

Because of the radiation, the soft tissue in her mouth and lips are changing and the lips have severe blistering that will not heal. During our last visit our RO was intrigued, because of the unusual conditions, and he proceeded to take pictures of the inside of the mouth and recommended hyperbaric treatment to improve healing.

Our pain management doctor referred us to a specialist for oralfacial pain at the school of dentistry associated with our cancer treatment center. We will be seeing him soon.

I would appreciate hearing from other members who may have experienced similar issues.

For the last three years all CTs and PET/CT have been clear. No sign of cancer anywhere.

Irrespective of all difficulties, she is here and life is good. We are lucky.

Vin, it sounds as if your wife has had 3 years of Hell. I wish her well in the future and will have her in the prayers.

Vin,

Not having had radiation treatments, I can't comment on your wife's ongoing challenges from treatment. I'm sure someone else will respond. But I must comment on the tone of your post...seems to me despite all her challenges, your wife has a strong and caring partner in her corner...and that counts for an enormous amount in recovery. Hope you get some answers soon.

Hi Vin, I cannot begin to imagine how hard this must be for both of you. As Jim said, sounds like three years of hell! I wish I had any insight to offer you, but I'm clueless. The Fentanyl patches were so bad for me that I used them for four days before realizing that they were making things worse, not better. I am so sorry about your wife's pain for all this time, and I really hope that others can suggest some concrete advice. I'm wondering if any relevant clinical trials in pain management or other aspects of your wife's experience might be able to provide meds that are not yet available to most doctors.

The one thing I CAN do for you is pray, so that I am doing now and will continue to do so. Please tell your wife that I am thinking of her and very specifically praying for her physical and mental wellbeing, as well as for your strength together in finding the best way possible to meet your combined needs.

You are doing an amazing job of checking out different resources that might help. God bless you, and please let us know if anything changes.

With concern and prayers,
Carol

Her hormone levels could have changed again. Most of us had our thyroid nuked and are on Synthroid, IMRT patients less so, but they are not out of the woods either as it still receives some radiation. But age, and other factors influence your body's absorption of the drug and the levels necessary, so constant blood work (for me now annually but used to be 6 months) is necessary to make adjustments. An endocrinologist that has H&N oncology experience might be a good visit.

The pituitary gland is the "master gland" in your body, regulating all others. I was surprised to find after radiation that my testosterone levels were in the basement. I mean those puppys are pretty far away from where I was radiated... but the pituitary, while not directly in the field of radiation, got scatter radiation, and doesn't work quite right. My adrenal glands also needed adjustment by supplementation in hormone levels as well. So she likely should see someone for whom this is a specialty and get all this checked.

As to 02 treatments, I am surprised that with areas that are not healing well, they didn't put her on this earlier to stimulate the process. Many here have had good results from the treatments.

Hi Vin, I remember you, I don't know if you remember me, because your wife finished her treatment just a month after I did and we had many of the same problems with swallowing and persistent mouth pain. I also had my thyroid quit on me and a lot of fatigue before they finally got it adjusted right. And what really interests me is I still sometimes have quite painful leg/foot cramps and everyone has told me this can't have anything to do with my cancer treatment and now I wonder.

I don't have severe blksiering on my lips, just dry lips, but I do have some mouth blisters that don't want to heal that make it hard to eat. I will say that unlike your wife, I am not on prescription meds still. I get by-- with a fair amount of chronic mouth pain-- by taking OTC anti-inflammatories (naproxen) most of the day. I still have my g tube because I think I may have some additional issues with a worn away epiglottis that your wife doesn't have but I also have basically had 3 years of hell and am now trying to mentally gear up for a painful surgery that hopefully will help relieve the trismus and jaw cramps I have. But, like your wife, I have gotten the all clear in terms of being cancer free at all my checkups and I am grateful for that.

I have not had HBO therapy recommended to me and I wonder how much of that is because it isn't available to me locally--I would have to get it at a hospital over an hour away and maybe my docs here aren't aware how much it might help. I need to ask about it more. I also would be very interested in hearing how it helps your wife.

I hate to say it but it really is true in a way that "misery loves company" in a sense. I feel a little better knowing I am not the only one that has had long terms pain and healing problems, though I really wouldn't wish it on anyone else. Anyway, if you want tell your wife I'm still having issues too and maybe it will make her feel better. And I really hope the HBO therapy helps.

Nelie