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!

Hi Carol - welcome to the family.

Chris said above what I was going to tell you. Your and his job today is to get through TODAY, not to worry about tomorrow. I have heard it be so bad for some that they had to focus on getting through the next HOUR. It's uncomfortable, it's lousy, it's a thousand other bad adjectives, but somehow we persevere and get through it; and having done so gives us strength and hope and helps us get through tomorrow. Eventually, we come out the other end of the tunnel and get back to something resembling a worthwhile life.

I too had a lot of mucous problems; there were days when I wondered if today is the day I choke on that mucous and have an emergency right here on the treatment table. I found what worked for me was to lay there very still, don't get nervous and don't fidget. Breath slowly, deeply and evenly through my nose and through my mouth if necessary. Really slow, rhythmic breathing meant the flow of air past the mucous wouldn't cause me to feel it and thus prevent the sensation of choking. Don't try to swallow the mucous every few seconds. That it often can't be swallowed also creates the sensation of something foreign being in his throat, ie the sensation of choking. It worked for me every time, even on the days when I thought it wouldn't.

Have him tell his RT that he is having problems with mucous and possible choking and to keep a close eye on him during treatment via the camera pointed at the patient. I often wondered how I would get her attention quickly if needed. Would waving my arms around wildly do the job or did I need a better signal. I even thought of banging my hand on the side of the treatment head, but that would work only if I could reach it. Just today I had the idea to take a flashlight with me. That light beam causing a flash across her monitor might get her attention better and faster. I can see disadvantages to the flashlight idea, so it's probably better to just talk to her about it. I'm sure she has had problem mucous patients before and has some ideas of how to make it better.

About anti-depressants, sometimes our male programming is our own worst enemy. Maybe the best way to approach it is to suggest he take a very light dose of anti-depressant, the goal being to just get him started taking something to "help a little" or just enough to "take the edge off". Call it a starter dose if necessary; see if you can get the doctor to use the same phrase. Once the idea has been broached he may be more receptive to changing the dosage to what is really needed. I understand where he may be coming from about this. I feel the same way; I would never take anti-depressants (or so I tell myself). But, then I didn't have the level of side effects he is having, I pretty much knew with certainty I would get through today and every day and do so with minimal discomfort.

Lastly, get him to start reading the forum threads himself. Just hearing how other patients got through it helped me a lot. I'm sure you are doing a great job as caregiver but he is missing out on a lot by not being a forum member himself. If he isn't comfortable using the computer, maybe you have to help a little with forum navigation. But, there is a lot of valuable information on this forum that he needs to see with his own eyes.

Keep fighting, both of you will get through this and come out the other end. We wiil be here with you all the way through.

Tony

Hi Carol, here are a few things to try to get to the end of treatment and the months beyond -- have him sleep reclining on a pillow instead of flat on the bed, put a humidifier near the bed and get a Waterpik. Set it on low and use the tongue scraper attachment. Put in a little of the magic mouthwash in the water and have him clean out the gunk before bedtime. Also, do it as often as needed during the day. It clears out the mucous.

My husband has the same diagnosis as yours and he said to me again and again that the Waterpik was really helpful.

If you husband gets very nauseous from the Cisplatin, make sure that you tell the oncologist before the next infusion. They can put in more anti-emetic medication in the infusion as well as give you a prescription for pills that you can take home. Get ahead of the nausea, don't wait till he starts throwing up.

All the very best.

Thank you all! Well, we went in this morning and reported to chemo. His labs came back awful and the chemo doc said, "no go." We spend the day in the hydration lab getting him pumped up full of saline and potassium instead of poison. haha While I am nervous about him not getting the third round of Cisplatin, I am a bit relieved. He is in pretty bad shape today. The deal breaker was his kidney function numbers. Lousy and we all know how hard Cisplatin is on kidneys. His WBC and Platelet counts were much too low, as well.

One good thing came out of today, he finally agreed to start handling the pain more aggressively. He has pretty bad reactions to all the normal pain meds. He gets headaches, nausea and itching. The chemo doc wrote out a prescription for a Fentanyl patch. I'm hopeful it will do the job.

He managed rads today. I think the combo of Zofran and his pretreatment Ativan helped really relax him. Thank you, Tony, for your wonderful suggestions on the whole mucous problem. I think that is our biggest hurdle at this moment. I am absolutely going to get him on here and have him try these suggestions. You all are fantastic and so generous to take your time and help us newbies. Hopefully, I can someday return the favor.

I didn't get my third cis, either. It's a booster not a killer so overall the radiation is more important. I was disappointed and paranoid too but it faired fine without it (so far) hugs

Thank you, Cheryl. I was kind of freaked out that he's not getting the final Cisplatin, but I feel better today. 5 more rads to go. I swear, he is getting worse as the hours pass the last 2 days. His mucositis is really kicking in since yesterday. I've been putting Oxycodone through his PEG and it is at least taking some of the edge off the pain and kind of knocking him out. He hasn't been sleeping or even napping through this whole treatment, so far. His chemo doctor mentioned trying a Fentanyl patch. My husband refused that idea but I think today's pain is making him rethink that decision. I'm putting in a call tomorrow to get a prescription.

Oxycodone, other pain meds as well, should not be crushed to be put through the peg, which can cause an overdose. There may be a liquid type, but I'm not familiar with that, and used the Fetynal patch when I needed more pain relief.

Good luck

Do understand that the majority of us suffer the greatest the 2 to 3 weeks AFTER radiation stops so I know you are trying but you must get a handle on his pain now because it will only get worse, perhaps even much worse. Many have used the patch which can be "dialed" up as the pain level increases and then dialed back down to safely get him off that drug.

I was told I could crush his oxycodone for his PEG by pain management team at the cancer center. I am always sure to ask before I put anything new through his PEG. Thank you for the warning, though. The chemo doctor just prescribed Fentanyl and Dilaudid. Our pharmacy was able to fill the Fentanyl patch but they didn't have the Dilaudid. That I haven't filled yet and would like to read up on what family of meds it's from before I fill it. The doctor explained that the Dilaudid was to be used for break through pain. I have to admit, I do get a bit nervous with these meds. Do you have to be weaned off of the Fentanyl patch?

[quote]Do you have to be weaned off of the Fentanyl patch?[/quote]Indeed you do. This is a very powerful drug so do stay and watch carefully the effects. The patches come in different dosages and is very effective.

Remember pain slows recovery and healing so do accept pain meds as there is no reason to suffer.

Good luck,
don

Be very careful with the fentayl patch. Read the directions thoroughly. The fentanyl patch is the strongest pain killer available. Never fold, bend tear, cut, rip or damage the patch. Always put it in a different place, changing it every 72 hours. It will take about 24 hours before it starts to work. When wearing the patch do not take long hot showers or baths as very hot water could trigger too much medication being released causing an over-dose. You will slowly build up a tolerance and also have to be stepped down on this stuff. It worked great for me and many others on the forum. It also can make him tired and constipated.

Its like everything else, just a tool to get your husband thru this.

Best wishes!

Hi Carol and welcome. In answer to your question about lying flat and choking/vomiting. He'll probably know that by now when you put the mask on you have to put yourself in another place. You need to mentally clear your mind of whatever the symptoms of the day are, and suck it up for 15 minutes. When I put the mask on, I saw my reflection in the machine and I was someone else. I was a cancer fighting superhero and the mask was my armor. Sounds silly but it worked for me.

I missed the 3rd cisplatin. Its not a big deal, but if he can manage it it is beneficial. The reason so many people get out of it, by week 7 you usually have one or more side effects that make the 3rd dose unviable. Mine was tinnitus. The first two doses gave me quite a distressing amount of tinnitus, and the third dose would have made it worse. Its permanent, but doesn't affect everybody the same.

Of course its preferable if you can get the third dose in, but ultimately its a decision for your husband in consultation with your doctor. But if he can't get it done for whatever reason, don't beat yourself up over it. The decision is made for the right reasons at the time, and second guessing the decision later won't help.

No cancer journey is the same but I think as you've seen here many of us have been over the same bumps. Keep the chin up, its very contagious when it drops! Best wishes to you both.

I drove myself 40 miles each way to/from Moffitt to get my radiation, etc. Towards the end of Tx I would occasionally have to pull off the hwy and toss my cookies and I even would have to visit the bathroom at Moffitt right before I was called to the table. At first I was terrified that I wouldn't be able to get thru the rad session and I really didn't want to make a mess on the table but for some reason, maybe as Dave says "you have to put yourself in another place", once I laid down the nausea was replaced with other feelings and I never had to stop any rad session.

Thanks all. I read all about the Fentanyl patch before putting it on him and your advice is ALWAYS taken into account. He's on the smallest dose, 12 mcg. and oxycodone for breakthrough pain. He seems to be handling things very well, so far. I am watching him carefully for any ill effects. Truth be told, I listened to his breathing all night last night. He has had constipation issues for a while now. I mentioned it at his rads appt. today and they gave me a "constipation protocol" that he is to start this evening. Do any of you have any products that worked better for you than others? Thanks again!

Glad to hear he is accepting the pain relief. There are a number of traditional treatments and medications for constipation. My own experience with constipation was very slight. I did get some pills but the problem was fleeting so no idea if the pills helped much or things just got unclogged. Good luck.