Hi, I found this forum pretty late in my husband's treatment. Better late than never, right? My husband was diagnosed with stage 4a oropharyngeal cancer the beginning of June. He tested positive for HPV and primary was base of tongue and went to lymph nodes on both sides. He immediately started course of 35 radiation treatments and cisplatin every 21 days. We have 7 radiations left and tomorrow is his third and final chemo. I have 2 questions for everyone. He is in such a bad place mentally and physically. This morning, after another sleepless night thanks to choking and gagging all night on mucous, he had a breakdown. He said he just doesn't think he can continue. He is very afraid of radiation tomorrow because lying flat on that table, he's afraid the mucous will choke him and he can't breathe. How did you handle this problem? Also, he is considering opting out of the third chemo. His chemo oncologist told us that only around 25% of his patients on this regimen are able to complete the third cisplatin. So, there is a chance his labs will prevent it anyway. Have any of you opted out or weren't able to complete the third chemo? How did you fare? I'm just a nervous wreck. He is so beaten up and I know the third chemo will put his mouth sores and other side effects into overdrive. I'm just trying to keep him calm and logical today. I can't even imagine how he feels. Bless all of you going through this horror. Forgot to add, he has a PEG tube which was put in before treatment began.

I had the same cancer and similar treatment. *Everone is different!* but here is my experience. For me the second chemo was the hardest. By the end you're just in survival mode. I argued and fought against anti-depressants and felt immediately better after starting them. They and pain meds are tools to help him get through this. If he is still that low, inquire about changing or adjusting meds. Don't get me wrong, it will still suck. You just need to lower the suck level a bit so he keeps his head up.

I remember telling my wife "I'm not gonna make it" and the next thing I remember is starting to feel better.

Thank you, Chris. I can see from your signature that you are a few years out from this. That in itself encouraged me and gave me a bit of a boost. I will read this to my husband. He is on no antidepressants and like you, has always fought them. He takes an Ativan before each treatment because he is severely claustrophobic and the mask was brutal for him. I think we will discuss the antidepressants again this evening. I know from reading that we still have a LONG road ahead of us and I don't want him to be in this dark place through it all. Thank you so much for your honesty.

Welcome to OCF! You found us at a very good time. We will be able to help guide you thru the next few weeks which are the hardest part of this whole thing. We have been there and understand just how horrible your husband feels right now.

The very best thing you can do to help your husband is to pay very close attention to his intake. I know he feels awful and wants to quit but he cant! I was in that same dark place towards the end of my treatments and I tried to quit but my son and nurse wouldnt hear of it. At that point I was in a wheelchair from malnutrition and dehydration which turned into hospitalization. Every single day starting now push your husbands intake to be at least 2500 calories and 48-64 oz of water daily. No skimping! Not even for one day as one day quickly turns into a downward spiral leading to feeling even worse. Ask the doc tomorrow for a prescription to get hydrated a few times per week in the chemo lab. I guarantee your husband will immediately feel better after getting a couple bags of fluids. If you can get 3000 or even 3500 calories into your husband that will help him even more. I know it sounds like way too much but for what he is going thru, its not. Make sure he swallows every day several times a day too. Even small sips of water will help keep the swallowing muscles active and working.

Dont fret about missing the third round of chemo. Most of us who had it done with the 3 big dose method werent able to handle the 3rd one. Chemo assists the radiation, alone it wont eliminate the cancer. This is beyond your or your husbands control so try not to second guess it.

The next few weeks are going to be difficult. Radiation keeps working even after the treatments end. Your husband will feel pretty lousy for a good 2 or 3 weeks after his treatments finish. Recovery is a loonnngggggg road! Its full of ups and downs with a few good setbacks thrown in for good measure. After about the 3rd week post rads your husband will wake up one day and feel a little better, this is what we call crawling out of the tunnel. Its a frustrating time for everyone. Being well cant happen quickly enough and the setbacks can get depressing.

As a caregiver you have your hands full. Make sure to take some time to be good to yourself. We are here to support not just your husband but you too. We understand just how hard it is for both of you.

Hang in there and good luck!!!

Everhopeful,

Please read my Signature Line first. You need to maybe print this thread and leave so he can read it. Yes this Tx sucks the big one and yes he has every right to be in a dark place right now and unfortunately it will even get worse before he will finally walk out of this dark tunnel BUT please let him know that what he is going thru is normal. Just about all of us that went thru this Tx were right where he is. You need to get at least 2500 cals in him along with 48 ozs of water EACH and EVERY day. As Chris said consider the antidepressants and do try and find a pain med and anti nausea that works for him. Watch out for constipation and react quickly. He probably won't be given the 3rd Cis and a lot of people don't. The thick mucous is a stage that we all went thru and typically only lasts a few weeks. Last comment...he MUST finish the radiation. PM me if you want to talk.

Before I started tx a nurse told me head/neck is particularly hard for men. I asked why and I will paraphrase her answer:

Men are stupid.

We say things like "I have a high pain tolerance"
"I don't need a port. My veins are awesome"
"No, don't need help. I've got this."

I said every one of those. There comes a time (and it sounds like you're close) when you need to get through TODAY. Yesterday has obviously passed. Especially with radiation tomorrow is already on the way and will get here soon enough. So today: get your calories and fluids. If you're tired, rest. If you can't rest get meds that will help you rest. You must rest. Attitude is very important. Being down can turn in to a spiral and should not be trifled with. Everyone has bad days but the trick is recognizing it and responding to it. I always felt better when I was helping others, especially when I didn't really feel like helping anyone.

Thank you Christine and David. Your experience is invaluable to my husband and me. It's funny, I woke up this morning with one goal in mind: push the water on him. I have read repeatedly about how dehydration makes one feel so much worse. He just stopped taking food by mouth last week. He has been trying to drink water but I'm mostly hydrating him through his PEG. He keeps telling me that the mucous is so thick down his throat that it's nearly impossible to swallow. I think that's a bigger issue for him than the pain. He didn't do very well with the swallow test earlier on in treatment. His tongue was pretty weakened by the tumor at its base. I know he will be going through swallow therapy. He chokes quite a bit on water.

Thank you for reaching out to me. I think it will make him feel better just knowing that what he's experiencing is normal and he WILL get through this.

Haha Chris! How very true. You sound like your wrote the book on my husband! He can be a tough nut to crack at times, but he's been pretty good about me pushing him. It's a fine line between caregiver and wife. I try to respect his opinion yet I know he is basing decisions on how awful he feels right now. I will carry that man on my back, if I have to, and get him to that finish line. Thanks for your input.

Do try and get him to use his swallowing muscles every day. Those muscles tend to quickly "forget" their function and can and does in some, lead to lifelong swallowing difficulties. Try and put this in perspective that the usual time that most of us have issues with this Tx is from the 4th week during Tx to the 3rd week Post Tx so we are talking about a short, relatively speaking, 7 to 8 week nasty time. As Chris says, take it one day at a time. Set daily goals, such as 5 cans of Boost VHC and 6 cans of water. I spread my cans throughout my waking day. One can when I woke and 1 can ever hour thereafter. If I felt spunky I would do 2 just in case I didn't feel up to it later. Trust me I didn't make my goal every day but every day I woke up to a new goal.

I sent you a private message (PM) with some info. To get your message click on the tiny flashing envelope next to the My Stuff tab. The link in your PM has info to help you make a signature. Its very important to have one, it helps us to better help you.

Thanks!