New "Survivor" Asking For Help

Thanks Mark for the reply. I jiust cam across this Support group and have been amazed by the wonderful "angels" that provide great support. My husband has Stage IV tonsil cancer as the primary source and his lymph nodes are swollen on the left and right side. We are being treated by the U of Miami Sylvestor Center. We see the Chemo and Radiation Doctor's tomorrow for a consult. All the suggestions have been wonderful in preparation of the treatment. I plan on speaking with Todd to convinve him to get a feeding tube, as so many suggestions seem to be advise. I want to get as much info as I can so I can help him through this. Once chemo and rad starts what can we expect based on the first few weeks ( I am trying to take this on a little at a time) ?

Hi Linda,

My husband has stage 3, right tonsil SCC (T3, N1,M0).  We are also in the Miami area.  We had plans to be treated at UM Sylvester.  From what we heard they were tops in the area for cancer treatment.  We ended up switching to Mt.Sinai on Miami Beach.  First we started at Baptist (that's where we found out he had cancer) but they only handle about 6 or 7 head and neck cancers per year.  We flew up to the Mayo Clinic in MN for a 2nd opinion.  They were great and gave us lots of info.  Then flew back to Miami and tried to get and appointment at the UM and it took us 3 weeks to get one appointment.  The tumor board met without us and then never contacted us.  Then after we made many many phone calls, we got an appointment with the chemo doc and radiation doc. in the same week.  They met with us and told us it would be another 3 weeks before treatment would begin...and the clock is ticking.  We were not impressed to say the least.  I had done some research on IGRT (Tomo) machines (Do a web search on this) and I found out that UM Sylvester doen't have one.  They use just IMRT, but Mt. Sinai does.  The UM also said they didn't do PEG tubes.  Every other hospital said it was very important.  My husband has one in now and it's kinda strange to have, but he's dealing with it (no pain really, just strange).

Right now he's on day 12 of 35 radiation treatments and has had one of the three treatments of chemo.  He has already had some issues with non-stop hiccups, ran a fever of 101.5 and became very ill as a result of one of the medications to help with the side effects of the chemo.  BUT after just 7 treatments, the tumor was already more than 50% gone!  He has a loud ringing in his ears from the chemo (and I hope that will go away after treatment ends, doc says it will) and the dry mouth is starting...but no mouth sores yet.

One thing I've learned in the last few months is not to believe survival stats.  If you look for them on the web, the stats are almost always old stats, even when they say it's new info.  If you talk to different doctors, even at the same hospital, they're all different numbers.  Just focus on the treatment.

This is a great message board.  Tons of info from everyone.  It's really been a big help to me and others.  Read as much as you can....do as much reseach as you can, and tell him to start packing on the pounds.

My husband is a 47 year old non-smoker, and rarely ever drank.  He was always very healthy, so it's still a shock to me that he has this.  But we're dealing with it.   His taste buds are starting to go and he can feel his throat starting to swell and it's getting sore.

If you ever need to talk I'm on the board every other day. Good luck.

...Amy

Thanks Amy for your support and helpful Info. We did have to wait approximately 3 weeks to get into UM but I do feel it was well worth it. Things are now moving along quite quickly and we are very pleased with the care being given. We met with the Rad and Chemo Doctor’s yesterday for a consult and got a lot of details. I also heard about the TOMO and IMRT and asked about it. We were told that the machines are comparable in the approach. Your thoughts on this? They do highly recommend a Peg tube but felt my husband could possibly start the treatment without one. They do this procedure there. He is scheduled for Rad every day for 7 weeks plus 2 X on Fridays. We expect to start in 10 days.

I was curious what medicine your husband got that made him so sick. How did the Doctor explain that type of side effect?

I am so thankful I found this Board; one of the things that is so upsetting is not being able to talk about this whole ordeal with anyone. Its helps heal the spirit somewhat.

On 1/18/2007 Linda & Todd wrote:

Thanks Mark for the reply. I jiust cam across this Support group and have been amazed by the wonderful "angels" that provide great support. My husband has Stage IV tonsil cancer as the primary source and his lymph nodes are swollen on the left and right side. We are being treated by the U of Miami Sylvestor Center. We see the Chemo and Radiation Doctor's tomorrow for a consult. All the suggestions have been wonderful in preparation of the treatment. I plan on speaking with Todd to convinve him to get a feeding tube, as so many suggestions seem to be advise. I want to get as much info as I can so I can help him through this. Once chemo and rad starts what can we expect based on the first few weeks ( I am trying to take this on a little at a time) ?

Just saw your message.  I have been there and done probably about what your husband will experience.  I had never had any serious problems until this happen so tell him misery loves company.  Recovery isn't an easy road but think he will do all right if he just takes super good care of himself.  It is my opinion from what your saying about his condition he does need a feeding tube. I fought it tooth & nail and doubt if I would be here today without the tube.  I had eight wks of rad. and two chemo treatments.  Oh, what brought my attention something wasn't right for I had thought a cyst starting on the left side of my neck. Doc wanted to do a bilopsy, and told him just go ahead remove the cyst.  He warned me it didn't appear to be a cyst.  He was right for the bad cells were on both tonsils, and far back on my tongue.  Removed the cyst, a couple of nodes, and out came the tonsils.  Next was  eight wks of the treatment.  Finished it all June 21,06.  Now getting back to him.  Recovery to me was far worse than the treatment so just want you to be aware it will go with the territory.  Hope his is shorter than mind but for example I am just getting to eating again and it does seem like I am in heaven.  Also, near the end of treatment talking and swallowing can become a problem but gradually will improve.  It will try ones patiences but  he has my word for it is woth it in the end.  I still use the feeding tube and at first started with supplements suggested by the Cancer society.  This in my opinion is very important to the good recovery.  Didn't agree af first but they were right as I look back now.  I am sure he will be like me for very frustrated from time to time, and you are the best support he can have for recovery.  Since I can now talk would be glad to speak with him on phone, and if you ever need any help or suggestions my wife would be also glad to talk with you on ph. I can always give you my e-mail address to start.  I had a lot of people praying for me, and will do the same for him.  Roger

Both your husband`s will survive this.

 I was diagnosed Stage IV SCC (right tonsil and metastisized to nodes) N2/T2/Mx in October 2005. I had 35 radiation treatments and 7 chemo (carboplatin/Taxol) treatments. I ate a ton before treatment getting up to 240 lbs. I never took the feeding tube and ended up at 182 lbs. I lived on Ensure (strawberry) only for months. It will be very tough, but as I said, both will survive. Have no doubt.

 Any questions you have please, please do not hesitate to ask. I just had my one year petscan and am still cancer free. I do have some soreness in the neck etc., but no big deal. My big complaint is I am one of the few that didn`t get taste back, but I`m alive and waiting on the "SUPER BOWL".

Again, ask anything at all. Survivors love to help. As much as you love and care for your mates you will never know how they feel like us survivors do.

 Ron in Michigan

Hi Linda...

Emend was the one that caused the hiccups..and Amifostine caused the fever, vomiting, rash and over-all flu like feeling.

I can't remember the name of the doctor at the UM that told us no peg tube.  I do remember he said, "Oh we don't do that here, no peg tubes, too much poking around and possible infection and things like that".

Part of the run-around we got at the UM may have been due to the holiday season.

So far we're just starting to figure out how the peg tube works.  I'm not quite sure about checking for residual and if we're doing it right.  I guess we need to get more info on it.  He's lost 5 or 6 lbs already and it hasn't even been a month now.  The mucus is a major issue.

But the cancer is going away fast!....So that's good.

-Amy