My husband was diagnosed two weeks ago. The cancer is at the base of the tongue, HPV+. We have seen the radiation oncologist and are waiting for an appointment with the medical oncologist, hopefully soon. He already has his mask, radiation planning session, seen his dentist, and will be seeing an audiologist today. A lot is happening and it is sometimes overwhelming. I'm glad I found this website, particularly the forum. Will stay hopeful and take it a day at a time.

Gloria, sorry to hear this but we're here to help. Sounds to me as though you're taking all the right steps. Additionally, now is the time for your husband to eat everything in sight and anything he likes. Most of us lose weight during rads so he might as well bulk up now. The fact that he's HPV+ is, as I'm sure your docs have told you, a hopeful turn of events!

Might not be a bad idea to get his thyroid checked too, as radiation can mess with the thyroid (it did for me).

We all understand the overwhelming part! But he's fortunate to have you to help him. He's going to need all the support you can provide. And you'll need help too! So don't neglect yourself in the process.

Ask any and all questions you can think of. The people on this forum are fantastic. Someone will undoubtedly have an answer, and all us are here for you.

Courage!

Hi Gloria. As caregiver you have a very important and difficult role to play. On top of keeping your husbands nutrition and hydration up, taking him to appointments and tx and myriad other things, be sure to take care of yourself. Strength to you both.

Re the thyroid, record the number of his TSH level from a blood draw analysis pre Tx and keep it just in case his thyroid craps out like many of us that had the radiation. That number seems to be unique to each individual and the challange is to achieve that pre Tx number once on Synroid post Tx.

He really needs to fatten up before the effects of radiation begin to take it's toll. Most of us lost tons of weight during Tx.

Has he gotten dental trays? If so he should start wearing them every night starting now. I wore mine 1 month pre Tx, mostly during Tx and 5+ years post Tx. I recently stopped with the permission of my dentist.

You mention the MO, are there nodes involved? If they recommend chemo and they recommend Cisplatin, ask if they would consider weekly infusions vs 'The 3 Big Bag" method. Most seem to fare better in the nasty side effect arena with the weekly bags and no study has concluded one method is superior over the other especially considering his HPV+ findings.

Hi Gloria,
I am so sorry to hear that you and your husband have to be part of our group, but please know that you are with family here and we understand everything you are feeling. You can read our signature lines at the bottom of our posts and kind of see who has been through what. There are many of us with BOT history and we are glad to speak to you via private message or on the forums. Some questions can get rather personal, so feel free to ask privately. Otherwise it's good to keep things here on the forums so others hear what everyone says.
Everyone has given really good suggestions, and your attitude seems positive, so you are ready for battle!
The eating tons now is quite important, then once he starts tx nutrition and hydration are very important. Even when he tells you he doesn't want to eat or drink, he has to, not doing so is not an option. He might think you are being crabby and bossy, but, that's our job!
Please, from care giver to care giver, reach out to others. I went this alone because I didn't find the site until the end of tx. It was so hard. That is why I am determined to help where I can. You have to remember to take time for yourself. There will be days that will be completely overwhelming and days that you both are ready for the battle. Take advantage of those good days and have a little fun if he's up to it. We didn't go out much because I was afraid he would catch every bug out there, but we had 3 kids in 5th and 7th grade, so the bugs came to us!
Hang in there and as everyone has said, we are here for you anytime. You now have a very knowledgable support system!!
Blessings,
Kathy

HI... welcome. and good luck - I know it seems overwhelming but you will get through it.

hugs.

Thanks everyone for you encouragement. It's like having all of you holding my hand and it's very comforting.

David, yes, there are lymph nodes involved but I don't know how many. The RO said the chemo will be in weeks 1, 4 and 7 of treatment. I don't know if that is the "three big bags" or not, but will make sure to ask when we see the MO. I have written down the thyroid question in my notebook so I will remember to ask when we see the RO before treatment commences.

I am getting my husband to eat lots. The fluoride trays are made ; now we will probably pick them up early so that he can start using them as David suggested.

Thanks for the very practical suggestions. I will take them all to heart.

Hi Gloria. Sorry you have to be here but welcome. You can read my signature and see that I have been where you are. My husband also had almost the same diagnosis. Feel free to ask any and all questions. I knew nothing about this type of cancer when my John was diagnosed. You have found the best place out there for information, love and support.

What helped me was to just take things one day at a time and to not think to far ahead. Write down any and all questions for the many doctors you will be seeing so you don't forget anything when you are there.

My husband didn't want to know any of the potential issues or problems and had (and still has) no desire to be on the message boards. He would ask me a question and I would come here to find the answers. Best luck as you two share this journey together. Hugs, Wanda

Gm is your hubby being treated at PMH? Btw the chemo schedule says 3 big bag..l otherwise it would be weekly. And that's PMH protocol. hugs.

Gloria,

Yes they are recommending what we call the "three big bag method". Considering he tested + for HPV meaning his cancer responds better to conventional Tx and many are considering studies with HPV+ SCC patients where the goal is to reduce adverse side effects by lessening the components of conventional Tx and considering that patients seem to experience less adverse side effects with the weekly bag method vs the 3 big bag method of Cisplatin and considering that there is no study indicating different results acheived using either method I would push for the weekly bags but of course discuss this with his MO.

Hi Wanda, my husband knows I am a member of this forum. I sometimes tell him what I have read in the postings but he finds it too overwhelming to come and read them himself. He'd rather take it as it comes. That's all right too, I have to let him deal with it in his own way.

Yes, Cheryl, he is being treated at PMH. We will be seeing the MO next week. We will probably find out more.

Thanks for the hugs and encouragement from the group.

Hi Gloria, I had the same diagnosis as John just over a year ago. Do please tell John to think positive. I got through the treatment, by hanging onto the fact that the prognosis is good. It worked and as of my last check up I am cancer free. Every month the chances of no recurrence is improving. I now feel pretty good. I still have some swallowing issues, but the body does need a couple of years to fully recover, so I am still hopefully for more improvement. There is lots of good advice on this forum to help you both yet through this, so keep porting. Best wishes Sally

PMH is an awesome hospital. Theyll keep him in overnight for chemo. Who is your MO? I had dr. chan... she's very sweet and very good. take care.

Dear Cheryl,

I agree. From the contact we have had so far, we have found the staff really caring and helpful. The MO is going to be Dr. Siu. We will see her on Tuesday. His RO is Dr. J. Cho.

Dear Sally,

Thanks for the support. There are so many positive role models here on this forum. I will make sure I keep them at the front of my mind all the time.

Welcome to OCF, Gloria! you will find lots of info and support here. Wishing you and your husband all the best with his upcoming treatments.

Hi sorry actually siu was my mo - cho is my RO - he's very good at what he does bith are and he's nice enough, but has a bit of a hard edge to him at times. You'll do fine... Had a scary experience with him in the beginning but it's okay now. I see him and my SO dr. Irish every 3 months alternately take care!

Sorry I'm late. It sounds like your husband and I have very similar diagnosis and treatment plans. I'm three years out and doing great! Hang in there. Yes, the three big bag method has its advantages. My issue was nausea and even with 5 anti-emitics, I was doing a lot of praying to the porcelain god. But they really seem to know what they're doing with this diagnosis so take heart.