My husband has 16 RT to go. He is 5'10" and started at 178-180 lbs. He weighs 170 lbs now. He is on nausea meds but he still gets sick (1x-2x day). There are many times that he can't keep the meds down that he takes 30 mins prior to eating (these are the nausea and pain meds that are intended to help him eat).

The RO told him today that he is developing mouth sores from the radiation bouncing off of his silver crowns or fillings and there is nothing they can do about that. Hopefully, that doesn't prevent radiation from reaching the BOT and other areas needing radiation.

He still has 16 RT and has been so extremely fatigued...it concerns me. He wants to talk to the Doctor AGAIN about removing his tonsils after this is over. Does anyone know if the tonsils are removed if that stops the chance of cancer occuring in that area of the throat?

Thank you!

I am surprised, perhaps shocked, that those silver crowns were not replaced pre radiation with porcelain. Was this discussed?

Were his positive cancer cells tested for HPV?

Any chemo being given?

You need to get his docs to get the nausea and pain under control because as you have probably read it's only going to get worse over the next 6 or so weeks. No mention of a feeding tube but if that subject comes up discuss the nasal tube with his docs.

Where his he being Tx?

Hi, Stacey,
my husband had the same problem with scatter from the radidation. Don't worrry about the radiation to the cancerous areas - that is getting there just fine.

In the case of an unknown primary, they should be radiating the best guess of where the primary is / was. You can verify with the RO that the tonsillar area was also zapped.

This was about the time when fatigue set in with my husband, too. It is a tough road, but I am sure you will get throught it together. Nutrition and hydration is key - you want to get the the TX as close to schedule as possible!
Maria

Although I never had it done, they may still be able to make wax or similar molds for the radiaion scatter. Someone on here or another blog, said their RO did it midway due to the same problem. Happy Holidays, if you can!

Stacey, by removing parts of him throat, it wont stop a recurrence from happening. All it takes is one teeny tiny cell to hide from radiation to have a recurrence. Who knows where this could be hiding? Best to concentrate on getting all of his treatments now and putting the whole thing behind him. Your husband will slowly return to his old self, sure he could have some after effects and limitations. Most patients will return to a life as close as they can to what they had prior to getting sick.

Happy Holidays to you and your family!

He is being treated by Oncology Hematology Inc in Southern Ohio w/RT at Jewish Hospital in Kenwood, Ohio.

The MO told him to have a flouride treatment and have his teeth cleaned prior to RT. It was a very casual conversation. The MO said that if he had a cavity or needed a crown then my husbands jaw bone might be crushed...then they would have a major problem. He went to our regular dentists and they did one flouride treatment (no trays) and stated that if he had an issue that they would just shear my husbands tooth off level with the gum. Absolutely no one told us anything about the metal crowns or fillings being a problem. He had plenty of time too. He had surgery on 10/12 and they did not start RT til the last week of November.

Yes. His cancer cells are HPV16+ and I need to change my signature to reflect that.

The ENT said Chemo and he knew the cells were HPV+. The MO then said yes until the PET Scan came back. He said that the MO's there and at a Cancer Center (started by Minnie Pearl but it's named after her her real name not stage name) had all discussed his case and they did not think he needed Chemo because the cancer cells are HPV+. He also made this statement tho that we should not be surprised if this cancer doesn't change to Lymphoma. We then met the RO and he said that he did not agree with the Lymphoma possibility. He also told me privately that the MO should have never told my husband that he would survive this. My husband cried in relief after we left the office and thought this RT was completely preventive ONLY.

The RO has given him Zofron for nausea and my husband has migraines and I don't think he takes them. The RO gave him a mild steroid medication last Wednesday but my husband has yet to take a pill. The RO is incredulous and so am I. I know that he has been sick twice since (within 24 hrs) and he won't take it. The Dr told him that he would have to go on a PEG, that he had mild mucitis and it will be extremely bad in the future. He told him the PEG would not help if he is throwing up and that he reduces his survivability rate by 1% each time he misses RT because he is throwing up. It's like he doesn't hear what the RO is saying.

He has always been private but we have young adult children that live here. He was very upset that I would have Christmas dinner and that I would invite my parents. I need to go to the Dr Friday morning so I can't take him but I can pick him up. He refuses to let our 25 y/o son take him or our neighbor. He wants to either skip it or drive himself (which he can't do).
We are not allowed to have any member of my family or his family here...period. I don't even know what to think of how he is acting and he won't listen to me and he made a statement that he feels he lost his manhood.

I asked the RO and he told my husband that the Primary Source they suspected was the tonsils or BOT and assured me they were radiating that area.

He claims that he drinks 48 ounces of water per day but when I take him for an IV they can't find a vein because he is so dehydrated. He doesn't take his High Blood Pressure pills because his BP is so low. I have told him about the nutrition, 2500 calories, protein and 48 ozs of water and he says he is but he isn't evidenced by the weight etc.

I will talk to the RO to find out about molds or something.

I sent his brothers emails today to see if they can talk to him or visit him. I don't know how to 'right the ship' with meds, food and water. My family wants to visit and help but no one can even talk to me or to him. He won't talk to his parents (in their 80's). Fortunately, I have all of you to help me.

I don't know what to do now. I have scheduled him for IV's every day that he has RT because he will do that right now. He is talking about dropping that already. I appreciate any help or advice.

Stacey, WOW do you have alot on your plate!!! Ive seen many patients come thru here that had been stubborn. It makes things twice as hard for everyone involved. I always feel so bad for the caregiver who is running around in circles trying their best to advocate for their patient while the patient works at burying their head in the sand. This is a lose-lose situation with no good outcome. The caregiver gets frustrated and the patient feels they have no control over anything in their life so they will choose the only things they can control and wrongly focus on those things which negatively impact their progress.

Whenever I hear of patients not taking in enough I begin to warn them about being hospitalized for dehydration and malnutrition. This is NOT a good experience at all. It happened to me several times and I felt so sick I thought I was dying. My body ached from head to toe and I mentally wasnt quite with it either. I wouldnt wish this on my worst enemy! Since the patient has so few choices many times they will think skimping one day on water or nutrition wont hurt and its a big deal that they can make it up the next day. That next day never comes and it turns into a viscous cycle of playing catch up. Same goes for nausea, once medication is skipped it becomes very difficult to stop the nausea. When nauseous its not easy to get the 2500 calories and without the meds the nausea will happen. So something little like by not taking meds it becomes a game of catch up that can never be won.

You are doing a very good job at being a caregiver. You are learning and trying your very best only to be met with stubbornness. I hate to say this but you may just have to have a confrontation with your husband. Since he is obviously out of touch with the harsh reality that this is a life or death situation he may need to be reminded this really is a fight for his life and he better get on board and begin to take it seriously. You will have to switch over to your nurse from he** hat and tell him like it is. Ive never heard of anything so ridiculous as skipping rads since someone else would have to drive him there. Thats a big excuse and its just back to trying to control things that are beyond his grasp right now. Sure he will be mad but I think you would much rather have an angry husband than not have one. Im so very sorry to sound harsh!!! I really do understand you are in a tough situation. But without confronting things it wont change and he will continue the buried head in the sand routine. Life does not stop when someone gets sick and by pushing everyone away it doesnt help at all. Things must change and the only way things will get better is by bringing all this directly to your husband and forcing him to be an adult and face reality.

Im so sorry about everything you are dealing with!!!!

Dearest Stacey,

I can totally relate to how you are feeling. When my husband was first diagnosed, I signed on to the forum and urged him to take a look himself; he read a bit of the info but felt it was "too grim" and would not come on again. We had a bit of a discussion and he told me he couldn't understand why I was making a bit deal out of it; he thought he would sail through the treatment and, if he should be in pain, all he would have to do would be to ask for more pain meds. Of course, we all know it's not as simple as that. My husband was a very healthy and strong 65 before his dx, and I guess he was having a lot of difficulty accepting the fact that he might not ever be what he used to be. That, in addition to the fact that the patient has a lot of information thrust at him while he is still digesting the meaning of the diagnosis. I am convinced that most patients may just choose to hear what he wants to hear and ignores the rest, or he may interpret it the way he wants.

Fighting oral cancer requires the patient to be really proactive, something my husband has not yet learned to do. We have had quite a number of tense moments over feeding,hydration, asking the nurses at the hospital for support from time to time -- even over at what time we should leave the house to go to the hospital.

Everyday I remind myself that John probably feels very lonely in the sense that he is the one who is fighting the battle, while I, at my very best, can only be the assistant. It helps me to deal with his moods with patience. I wait for the time of day when he is feeling better and talk to him about whatever I think he might need to do. I also ask the RO questions about long-term side effects in my husband's presence so that he can hear the answers directly from the doctor. (For example, this past Monday I asked about the percentage of patients who become lifelong dependent on the feeding tube.) I would, then, remind him that "you heard what the doctor said."

I cajole, I beg and sometimes I show that I am frustrated with his unwillingness to put in effort. I also hold him and tell him that we are both in this together and that while I am pushing him to do this and that, I am doing it for him and for myself too. It is very hard work, but I do think I am slowly getting through to him.

I would just like to share my feelings with you and I hope it makes you feel less alone in this horrendous fight. BTW, the IV for days when he goes in for RX is a very good idea. It will help him feel a lot better and may even reduce the nausea.

Stacey, you're a true soldier and you're in the toughest fight of your life, as is your husband. Everything the other posters have advised is great stuff and I know you'll be reading and rereading it.

All I can add is that Zofran never worked for my nausea. Eventually I got some Compazine and that seemed to help. So if you haven't tried it perhaps you could ask for some.

Whatever you do, whatever it takes, don't let him skip or stop the radiation treatments. Everyone here will echo that advice.

His weight loss seems to be about on a par with mine. I was 188 when I began and 6 weeks later down to 158. But I was doing it alone and had no cheerleader to help me get the proper nutrition. He'll do better with you.

Sad to say it, but assuming he keeps going with the rads he's going to have less will to fight you. But you can turn that into a positive by becoming more assertive, as it will be easier for you.

My heart goes out to both of you. But you can get him through it, and in a few months things will look much rosier.

Keep us posted.

Courage.

I read each day of skipping radiation is like lowering survival rate by 1 percent due to the cancer repopulating, and after the first two to three weeks of radiation, it becomes less effective anyway, and why it's done in 6-7 weeks, in fractions, boosts and other means. Although, they can still tack on the missed days, it's not the same, if unplanned, and longer radiation is not necessarily better for HNSCC, so it's important not to miss any days, and to complete treatment as planned.