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Wondering what might go wrong next but not giving up hope

Posts: 10
Joined: Feb 2010

Husband 42 years young diagnosis scc HPV stage 4 right side 5 nodes involved. neck dissection may 1 2009 Peg tube placed right after surgery.Chemo and radiation 8 weeks ended july 29th 2009.Had pain meds but did not use until end of radiation and then just to sleep.Some nausea but really through it all did pretty well weight started at 280 by end it was 240 so not to bad.Pet scan 1st of aug looks good we where told He started eating again about 2 weeks after treatments stopped.Lots of water to help everything go down.2nd week in sept find new lump right side.Ent said he thinks its just scar tissue from surgery and rad treatments. But will keep and eye on it middle of oct lump is larger so orders a biospy.Have that a week later next day Ent calls they are calling it a reacurrance but thats not what it is it never was gone he told us.pet scan is next 1st of nov.Wait a week then go see the Ent there are two tumors said he can,t do surgery because of the damage to skin from the radiation Said there was nothing more he could do.Has stopped eating again by now because of pain and having harder time with opening his mouth very wide.Down to 220 lbs now but can still drink.I up his nutrition to 3500 cals a day he was taking about 3000.Tumors are getting larger you can see them poking out side of his neck now.on pain meds now every day found new Ent who said same thing.Got set up with medical oncologist to start new chemo erbitux but no radiation.Start chemo 2nd week in dec 2009.Is now down to 200lbs.Try to up his cals again but he can,t handle it gets sick so have to stay at 3500 for now.Chemo is 1 day a week for 2 weeks then 4 days stright and has to be in hospital for that has a port in now.The last time he was in hospita was last week and they forgot to bring much nutrition.The hospital was 150 miles from us so i could not stay with him had to work.He got a total of maybe 15 cans wile he was there.he said he asked for it but they just never came and then he would forget if he had had any.I was so mad i won,t say what i said.I have great guilt over this he is down to 180lbs now.I won,t ever leave him again. I have been able to care for him through all this by myself.His tumors have opened up a couple times now and have been leaking.Oh by the way he does not go to that hospital anymore for treatments.I think he is starting to lose hope he has started giving a lot of things away.An i just don,t know what to think anymore when this all started they said he had an 85% survival rate.He is on a pain patch now and they just upped his dose and he says it,s not doing much good.He has gained a couple lbs back since he has been home.Oh i forgot he can,t even drink now because he has holes in the back of his throat.

micktissue's picture
Posts: 430
Joined: Dec 2009

I am so sorry to hear this news about your husband. All I can offer is that there are some on this board who also face difficult challenges and find hope here. If there are no options for your husband you might want to look into alternative treatments such as nutritional or meditative (http://tinyurl.com/alternate-treatments). Also at the American Cancer Society there are links to clinical trials (http://tinyurl.com/cancer-clinical-trials).

As well I'd suggest that your husband talk with a support group or a professional counselor.

Please let us know how we can help you through this.



debbiejeanne's picture
Posts: 3095
Joined: Jan 2010

Ann, I'm so very sorry to hear of your husband's illness. I will definitely put you guys in my prayers. I believe you can find some support here. I don't have any experience with this place but you may want to consider them: Cancer Centers of American. At this point, I'd try all suggestions. I pray that God will bless you with the right person(s) to help your husband and you.
God Be With You,

Posts: 12
Joined: Jan 2010

Your husband and you have certainly been given MORE than your fair share here. My prayers are with you. Check into major cancer research and treatment hospitals. Ive seen posts here where they have different kinds of radiation that can actually bend around surrounding areas and pinpoint the tumor, avoiding nearly all of the damaging side effects of rad. I'll look for that gals post. Point being, there may be some not common treatment being tested out there that could work for Burt. I suppose likelihood of infection was the main reason they wont operate? KEEP searching and DONT lose hope Burt.


delnative's picture
Posts: 450
Joined: Aug 2009

I agree with Sally: If you can, try a major hospital -- a research center or a teaching hospital. I went to Johns Hopkins and truly believe that if I'd gone to my local hospital I probably wouldn't have survived.
Don't give up.
You and your husband will be in my prayers.

--Jim in snowbound Delaware

Kent Cass
Posts: 1898
Joined: Nov 2009

Jim and Sally have given you good advice. My treatment was done with direct ties to the U of Iowa, which claims (?) to be second-best in the nation with head and neck. A second-opinion at such a medical center, with what is at stake, is logical, you know. Good advice.


Fraidy Scared
Posts: 3
Joined: Nov 2009

I am so sorry to hear how difficult this process has been for you both. I think the advise to explore other treatment facilities is the best possible thing you could do right now. There is always hope, if not in the minds of others, at least in what you believe.

How is it that this area was missed or untreated or what the heck? Get some experts involved asap.

I will keep you both in my thoughts and prayers.

Good luck


sweetblood22's picture
Posts: 3228
Joined: Jan 2010

i have no words of wisdom. only wish to offer you prayers and support for you both. i know it's hard.

sweetblood22's picture
Posts: 3228
Joined: Jan 2010
ygfilart's picture
Posts: 11
Joined: Feb 2010

Fuda Cancer Hospital in China. I am now recuperating very well from my tongue cancer stage 3 according to doctors in Philippines. They said no other option but to cut off my tongue, do chemo and rad. Glad i did not go for it. Best thing, no surgery was done in Fuda, no cutting off my tongue. And, i met a lot of patients with different cancers who are now very strong and healthy and very happy that they do not have to experience more pain with chemo.

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