I love your way of educating your husband! What a great idea!!! You are one smart cookie

If you call the American Cancer Society you may get some help with the driving. I volunteer and drive cancer patients to their treatments. Its a very nice service. It can give you a break even if its just one day every other week, it will free you up for something else. You can even ride along if you want, one passenger is allowed no questions asked.

Stacey,

Baby steps are important but he really MUST complete the entire treatment or it may all be for nothing and have to be repeated again. At least one study indicates that HPV does increase his survival chances but that is assuming he gets the same treatment as if he were not HPV+ meaning at least appx 35 radiation sessions with appx 70-72 gys and possibly chemo. Unfortunately HPV does not guarantee that he will survive as we have seen many HPV+ patients over the years succumb to this horrible cancer dispite being treated. He must understand that he and you are in for the fight for his LIFE. This is not a bad case of the flu. This cancer kills someone every hour of every day and will surely, without a doubt in my mind, kill him in a very cruel way if he does not eliminate the cancer from his body.

There may shortly come a time when you must expose your fangs and become the Caregiver from Hell. My wife and many others have had to do that during this treatment so don't feel alone.

Re the TSH levels...first off, radiation can permanently damage his thyroid. If that happens, like it did to me it is determined by measuring his post Tx TSH levels to see if they fall outside the "normal" range. Unfortunately this "normal" range is very wide and most docs are satisfied if they prescribe a pill (synthyroid) that returns your TSH to within this very wide "normal" range but we have found out that we all seem to have our own unique "normal" TSH level and only by returning us to OUR normal will we be, well normal. That's why we always advise getting your TSH tested pre Tx so that normal number can be archived just in case. Charm knows more about this than I so maybe he will explain it better.

We will be there for the both of you for as long as you want.

Is your husband feeling sick because he is dehydrated? Mine did and actually passed out while we were with the RO for the weekly review meeting. He was put on an IV immediately for hydration -- they gave him 2000 ml that day. Then we returned for three more days for hydration. That was a lesson learned the hard way. I totally see why Christine stresses the importance of hydration with each new member of the forum. Has your husband got a PEG tube, can he get one? That will help a lot with the hydration and getting enough calories in every day.

Stacey

I sad that your concern was dismissed. It's just my opinion, but based on what my endocrinologist (a doctor who specializes in hormones including Thyroid issues) says, and my own personal experience, that doctor is wrong in thinking that it is not important to know your husbands TSH level now. It's a common error, they even made it at my CCC, where I had a major argument with my doctors until they admitted that they did not keep up on the changes in the acceptable TSH lab work range, nor had they read that every professional society of endocrinologists felt that the lab ranges were too broad, nor did they have any defensible medical citations that said an individual should not have the same TSH level after radiation. I asked for specific citations and sources they relied upon and of course, there are none to support their position except a vague recollection of medical school and their current practice.
You are within your rights to demand, not ask about that they check two little boxes on the blood test form.
They do not have to agree with you, they do not have to do anything but get that baseline number for you now.
Because 18 months from now, that doctor will just look at the blood tests and say" It's withing normal range" without knowing what's normal for your husband. (By the way, the NCI guidelines on page MS-10 that Maria posted for you say that the thyroid test should be done 6 months and 12 months after the radiation, guess your doctor misread them and added them)
Since most people do not have experience in cross examining a doctor until they blush and admit error, your best bet is to sak politely to have the TSH test done and the actual number given to you. It can not hurt. You can say you'll feel better if you know that number. The other alternative is to contact the Patient Advocate at the hospital where you husband is being treated and just repeat your request to have one simple blood test done now, making it clear that you do not want or need the doctor to change anything or do anything different except gather an important piece of information on your husband.
It is arrogant and rude in my opinion to do another blood test on your husband and ignore your TSH request. Seriously, call the patient advocate
Charm,

Hi, Stacey
I know the TSH test doesn't seem important now but it you can get them to do it will help do the road. My husband's ENT keep virtuously including the test, and the TSH kept going up, but the (older) endocrinologist was just a pill about it. He followed up with a younger PCP and how is on a proper thyroid medication.

I am glad you are doing the driving to radiation therapy! My thoughts are with you.
Maria