Hi Folks,

Just responding to what my RO does for holidays. He opens up the Sunday before the holiday and treats that day. He firmly believes that not getting Tx 5 of 7 days each week negatively impacts results. I do not have treatment tomorrow (New Years Day) but was treated this past Sunday to make up.

Ray

Thanks for the feedback and support. He has 12 RT remaining I think. It's all in my diary. I told him a few days ago that I was trying to be conscious of things and not make his feel less manly. He told me that he said he was taking a hit to his ego. That was my mistake so I wanted to clear that up.


The MO had told him that he didn't want him to lose more than 10% of his body weight. He is at that point now and if he sticks to his schedule then he should finish 2 weeks from tomorrow.

The ENT (very 1st Dr that did the surgery) said that he might lose his voice. The RT's have changed the way that area feels in the last few days. He hardly spoke above a whisper a couple of days ago and I think it worries him a lot. The MO had the opposite opinion but you can't help but worry about voice loss.

He's very fatigued now.

We have an appt with the MO tomorrow and hopefully learn more then. I am semi-worried because they called us and asked for the appt. They said they wanted to clear up any confusion. This MO told my husband that he would recover, be fine, no mention of Stage IV etc. My husband thought it was 'preventive radiation treatment only' based on the MO statements. When I brought this subject up to the RO (when he was in the hospital) then we received the MO call asking for an appt to clear up some issues that the RO had emailed the MO about. If the MO chooses to be honest now (AFTEr the missed RT's) then I hate to even guess what price my husband will have to pay for that poor judgment.

Re loosing the voice. Most of us do loose it temporarily. I think (it's been sooo long ago)I lost mine for only a few days to possibly a week. MY wife gave me a bell and a note pad to communicate. To this day my wife says that was the BEST part of my Tx and I have never seen that bell again.

Good luck with the appointment!!!

I lost my voice for a couple weeks. Its very common to lose your voice so hopefully this is one less worry you will have.

Stacey, May I suggest that you go to the meeting with the MO with a list of questions, e.g. Is the radiation preventative or is it treatment, what grade/stage the tumour is at, etc. the kinds of questions that you believe your husband needs to hear, so he gets to hear the answers from the horse's mouth .

When you see the RO, one question you could ask is whether the radiation field used in your husband's treatment will impact his voice in the long term or is the voice loss just temporary. Also ask what percentage of the RO's patients have actually lost their voices. Get the doctors to be specific.

My husband lost his voice during treatment as well, very much hoping this is temporary for your husband too. Ana

Most recent update:

He has 4 RT's remaining. The RO told him on Tuesday that 'You have to eat to live'. I think he has lost 25 pounds (from 180 lbs). He is trying to eat Ramen Noodles, French Toast, Egg Drop Soup but no Boost or Ensure. He stopped with the IV fluids last week because he drinks plenty of water (he says).

He meets with the RO on Monday. I will keep you updated. Thank you for your support and this forum.

He needs intervention with his weight loss, which is multifactal, possibly with an enternal feeding tube, medications, counseling, nutritionist, and speech, swallow therapist evaluation. Doctors get concerned when 10 percent of weight is lost unintentionally, and is considered cachexia or anorexia really, and he lost almost 15 percent. It is shown how one does during treatment, including maintaining weight, can effect prognosis, and too much weigt loss effects negatively, effecting healing, and bodies ability to fight cancer. As you probably know, and heard, he has one shot at this, but it's really up to him to fight or flight. Everyone needs help, and there are meds to increase the appetite, build muscle, reduce inflammation, improve mood, and easy ways to add extra calories to foods, plus other interventions mentioned. Thankfully, he has you by his side.

20 percent of cancer deaths are due to malnutrition from anorexia, cachexia, and cancer. Even 5% weight loss is a concern for some doctor's and clinician's. Here is a link for "Nutrition In Cancer Care PDQ" from the National Institute of Health, with plenty of information regarding thr proper need of nutrition with cancer, during treatment, recovery, therapy assistance, and others.

http://www.cancer.gov/cancertopics/pdq/supportivecare/nutrition/Patient/page1

Stacey

Sorry I may be missing this, but did the MO ever tell your husband whether the radiation was 'preventative" or treatment?
Like DavidCPA, I was an extremely stubborn patient - one that your husband would probably relate to. Despite what it looks like, it could all turn out okay. Even though late, the radiation treatments really do a job on cancer cells. As for the weight loss, that 10% or 15% weight loss "rule" is just a general guideline with lots of individual exceptions. I had bulked up with lean muscle mass to 177 pounds from my 127 pounds speedy marathon days. I refused the PEG so I lost about 37 pounds. I never had dehydration or any issues except having to put heavy lead weights into vest pockets and wearing combat boots when I got on the RO's scale. (which earned me lots of rebukes when I first joined OCF and was not only proud of it but encouraged others to do the same - I have now repented and renounce that practice and no longer recommend it). I'm up to 142 pounds now 5 years later so it turned out okay.
So it's a shame you have to deal with all this. But there is still hope.
Charm

The RO did tell him that it was not prevention.

We were going for IV fluids but he won't do that now plus he won't let me call the doctor or the dietician. He thinks they can't do anything to help him. I said they could do a nasal feeding tube and he made it clear that he would never do that (in a not so nice way so I left the house for a few hours). He did one Benecal in applesauce (few days ago) and said it is gross so that is done.

He was light headed last night and got sick today. I have tried to explain to him about the proper nutrition/protein/fluids etc. He told the RO this week that Ensure was gross and the RO told him that he needed to try to ignore the bad taste and drink it anyway and that he had to eat to live. The RO did not change his opinion/mindset at all.

He does have a RO appt on Monday morning and hopefully this RO can talk to him.