I am crazy worried. As worried as when my "always healthy" husband got DX in March of SCC Stage 4 BOT.

He made it thru chemo tho had every side effect possible and very harshly....made it thru 31 of 35 scheduled RAD treatments but the last 3 (last week) did him in......was in ER/Hospital 3X - he has quit treatment and nothing I say or the doctors say will budge him.
He is dealing with such bad side effects I don't think he is making good decisions...but, it is HIS "call to make". Just panic....anybody been here?

Sorry to hear your husband is having such a hard time with treatment. While the treatments were brutal, I never reached the point of wanting to stop. I just kept counting down the days.

Jeez... 4 more to go... just 4 more! Maybe a day or two off will help and he can finish. Treatment is traumatic and you're right, he's probably not thinking clearly or rationally at this point. Perhaps 31 out of 35 rad treatments will be enough. He did finish his chemo treatments so that's a positive.

Good luck... positive thoughts and prayers

"T"

Sort of, but not by choice. I only did the chemo part in 2009" and only 1 week out of three induction chemo, when I became deathly sick, in ICU for almost 2 months, before doing chemoradiation was to follow, and was hospitalized for 6 months, paralyzed and blinded. and could not complete any further treatment for over a year until 2011 since I was that ill. Because of it, it probably resulted in all my recurrences. Chemo does not cure this cancer, and will return, if that's all was done, in case anyone thinks likewise. I'm not saying his decision is good, but at least the majority of rads was completed, but for every day missed, is equivalent to 1.7 percent reduction in survival, and increase risk of cancer regenerating, which it does overtime, and radiation gets less effective after 5 weeks or 25 sessions, cancer regenerate quickly from the radiation itself , and that's why it is set up that way in the treatment plan in a specified time, and dosage is reflected to keep with this.

Good luck.

LMC,
He did pretty well: 31 of 35 is good, not 1005 but pretty darn close. If there is absolutely nothing more to convince him to finish then at least for peace of mind you should know he got the majority of the curative effect of the radiation. A few grays here or there will make some difference maybe but overall he got a lot of benefit of the treatment he received.

best to you, don

The over whelming majority of us (men and women) that had concurrent chemo/rad suffered greatly for a short period of time (appx 7 weeks) but our life was at stake. Don't want to sound mean but he needs to put his adult pants on and if it's not too late finish the damn Tx because his life may very well lie in the balance.

Even with the full Tx many people die a horrible death with this cancer so why in the world would anyone want to do less and give the advantage back to this cancer?

One question that comes to mind is his medications. When I went through (before IMRT) the radiation was brutal, and I was beyond miserable. Of course I was taking morphine and other opiates like it was water and that not only helped me manage the extreme pain I was in but the high doses of it actually knocked me out so I slept 18 hours a day almost at the end of things. It sounds like his docs could manage his pain and discomfort better allowing him to finish. If he thinks he is uncomfortable now, I think most here would agree that the month AFTER treatment was absolutely the worst.

Thanks all for your comments. He has had pain issues for a while & every single med they try for that has made him sicker - that has been part of the problem and has resulted in the 3 hospital stays. The doctors in ER last time (after 9 hours of trying to stop nausea and pain sort of threw up their hands and said there is nothing else we can do for you) and discharged him. Until that LOW moment, I had had nothing but good experiences with them (including our previous 2 visits). Even the nurses were overheard saying they "avoided" his room because it is so heartbreaking and they can do nothing. I get what you are saying David but if I had been thru what he has with every single severe side effect, I would have put MYSELF out of misery so I hesitate to push more than I have- and I have pushed. He is so weak & skeletal from it all (though he eats faithfully thru the peg) that I just think his mind and body have gone the distance they can go. Sounds whimpy but......he was so weak and, as always, constantly vomiting ....the last ambulance pick up didn't even try to put in an IV. Still he did it all faithfully and on command until that last TX31.....something snapped.

This does not sound whimpy at all! No-one can know what he is going through except him and if he has had enough and can not go any further then that is it. All of our side effects are different and different in severity and none of us can know exactly what someone else is going through. I think we all just want to make sure he does all he can to get rid of this awful disease, and it sounds like he has done all he can. I think we hoped that maybe with an extra push he could finish but not everyone can finish, and maybe not everyone needs to finish, C is so individualized and tricky there is no way to know for sure exactly how much or what is needed. Hopefully what he has done and been through is enough. I finished mine but that doesn't guarantee I will not have a re occurrence. All we can do is keep our fingers and toes crossed.

OH Rosy, THANKS SO MUCH. It is what I tell myself for comfort....the doctors themselves when asked, can't or didn't, give a good answer for WHY exactly 35 (and they ARE good doc's) don't get me wrong. It is not an exact science they say.

So, I too pray what he did was enough. But it is all he can handle.

How is your recovery?
I have to return to work and am scared to leave him but know he will get through. Do you have good support? You are so young. Bob is 67 but prior to this 67 going on 16!!!

Hi, LMC

the fact that he got the first 31 TX in good order is excellent. The treatment schedule and number of GY's ('grays' - the amount of radiation given) is somewhat of an art as well as a science. The idea it to kill the cancer but not the patient; and its a balancing act sometimes. Best wishes on Bob's recovery and on your return to peace of mind.

Maria

I was told by a doctor that the amount of Gys given during treatment was not really thoroughly scientifically tested or proven. They told me that 70gy or ~35 sessions with ~2gy/session was about the maximum limit the human head and neck area could take without serious complications. The fact that it is so hard to do any sort of clinical trial with dose deescalation, has made it impossible to test what the optimum level of radiation is. HPV+ scc's relatively high survival rate has made it possible for some clinical trials to be investigated on dose deescalation for the HPV+ subset of cancer patients. I was in one of those clinical trials.

My recovery is ups and downs like they all are, thanks for asking. I think I am doing very well. My PEG was taken out last week so I am eating all on my own again. I have had my first post RAD PET/CT scan and the docs didn't see any C.
I have family here for support Mom, Dad, Step-Mom, and a sister all live within 30 miles of me. I usually had a family member stay with me during chemo week and my Mom would stay occasionally through treatment, she stayed 3 days my last week of RAD, I was weak and needed the help to get to appointments. Due to all of us underestimating the recovery process she went to her vacation home in Alaska the week after I finished my RAD, the next month was the hardest but I got through. It took me a while to admit I was having a hard time and for my Mom to book a flight back but she came back Aug 3rd, a little over two months after I finished treatment and that was the week everything turned around for me and I started feeling better. I didn't always have people here with me during treatment but I always had family and friends just a phone call away.

I was very much like your husband. Every pain med they gave me made me nauseated which is just about the last complication a H&N patient needs during this Tx. I finally decided to stop all meds. I lost 30% of my total body weight and was also admitted to the hospital twice and had to visit the ER 3 times. The last hospital stay my wife was told when I was admitted that I was hours away of dying had she not convenience me to agree to go. So trust me I KNOW what he's going through BUT that doesn't make his decision to stop his treatment any more valid.

The one thing all of us learn after being on this site for any length of time is you must treat this cancer as aggressively as possible and as our docs say "throw the kitchen sink at it the first time" in order to have the best possible outcome. They wheeled me down on a hospital gurney to get my last radiation Tx. I was so sick and weak I kept my eyes closed the whole time.

When I was acting like an idiot and refusing to go to the hospital my wife finally screamed at me "OK then just lie there and die!". With that she left the room and didn't return for what seemed to be an eternity. By then I realized how stupid I was acting and agreed to go. Please do not give in to him. You have to be the strong person as we say the nurse from hell sometimes and this is definitely one of those times.

LMC, my heart goes out to you, the role of a caregiver is very tough. To say I was not popular with my husband during parts of his tx would be an understatement...I cannot even count the number of dirty looks he gave me. My tag-line was "you can be as angry as you need to be at me and the situation...just get it done". Now, one year later, my husband is deeply grateful for everything I did for him, including pushing him, hard.

My advice, now is not a time to ease off, no matter how hard it is. Push him. I used everything I had (do this for me, for the kids, for your Mom...just do it!) With this kind of cancer, your first shot at treatment is by far your best shot at a cure. Throw everything you can at getting him through the complete treatment plan.