Squamous Cell Carcinoma -Survivor

My husband Alan started in 2002 with a baseball sized Stage 4 Squamous cell tumor in the side of his neck,they {after giving him only 6 mo.} shrunk it down to the size of a raisin! Another popped in to his lung, that they cought with surgery. Then another tumor arose in the base of his neck again taggled within his arteries and inoperable, again it has shrunk considerably, all the DR's were shocked!!.He is only 44 and has gone through 33 Radiations,13 Chemo's Cisplatin, f5u,everything!! since he was younger they laid on the heavy artillery!! All the raidation has ravaged almost all of his teeth and he has had a stomach tube since 11/02. He does more than his fair share of Ativan. morphine, and the Duregsic Patches and he and I both know if it was not for the feeding tube he would not be here today. He has been clear for almost 10 months now. But the constant CT-MRI-PET-& scopes will always be. He is upbeat sips some soda & soup Play Golf. He was recently very disappointed when the Onolarangoligist (pardon my late night spelling---you know- the eyes ears nose throut guy?) Told him the radiation had destroyed his circulation in his esphougas and he would always be on the Feeding tube. Can anyone tell me of any instances of a long term tube ? What is the doctor really telling him?? I have done a lot of research and most people have them rarely over year... Any thoughs from anyone are deepley appreciated...Al & Renee in Denver

My husband had the surgery 4 weeks ago and now he is facing radiation & chemo that will begin very soon. He had 54 nodes removed on his right side with 8 being cancerous. The Dr can't find cancer anywhere else so far. We see the oral surgeon tonight for a consult on removing his bottom teeth. They all have crowns and they say they will cause a problem. Has anyone else had teeth removed for radiation? I was told that maybe a plastic cap could go over the removed crown and still save the tooth but I don't know yet if our oral surgeon will agree. I don't want more serious problems with his mouth after the radiation. He is also scheduled to have a feeding tube put in next week. Thank you for all your messages about that. I feel so much better about the tube being a very good thing. We are kind of in the "calm before the storm" if there is such a thing and scared of what is still to come. Any advice?

My husband had squamous cell cancer on the tonsil 6 years ago. He had surgery and radiation, lost his saliva but was good. We celebrated his fifth anniversary cancer free last February. March 30th, we found out it was spread in the lunges: 2 large tumors, not much hope...
He went for one cycle of chemo: carboplatyn and taxol, he is now supposedly free of cancer!
There is hope even if it is in the lunges.
Good luck!!!

First let me thank everyone for their wishes and prayers. I have all the information regarding my Mother’s treatment and wanted to run past everyone for feedback suggestions, directions and just because most of you have the knowledge I’m looking for. Mom has Stage IIB cancer of the left tonsil; T1-N2.7 (left tonsil – 1cm; lymph node 2.7 cm). The doctor says prognosis is 70% at 2 years and 50% at 5 years with the treatment. Mom will begin radiation on Wednesday Dec 14, every day, for 35 treatments at 7:30 am. NOT sure what type radiation equipment (tomography or not) will be used. Are there different types of radiation, as in different types of chemotherapy? Mom will be receiving Ethyol to minimize the dryness in the throat as a result of the radiation. Because of this treatment, she’ll need to arrive 2 hours early everyday for hydration. Mom will also receive a pick line to minimize the needle poking for hydration and chemo treatments. Chemotherapy (cisplatin) will take place only 3 times throughout the 35 weeks of radiation treatment. She has received 3 different types of medication to combat the chemo treatments. Questions: From everyone experience – what am I missing?

Thank you for this message. Glad to hear some one is alive and well

Hello folks,

I've read accounts of several people's experiences with SCC and my best wishes go out to all.

I was diagonsed with SCC on my tongue in August of 2004 and immediately made my way to M D Anderson in Houston. These guys are considered the world's best. When I first got there, it scared the Hell out of me because it is so big and they come out of the wood work like a bunch of bumble bees.

After a full evaluation, it was decided to perform an operation that would include the removal of 30% of my tongue and a partial neck disection involving an incision from behind my left ear to below my chin. Sounds scary but the scar in not very noticible and the removal of part of my tongue has affected my speech very little.

After the operation, they decided I needed six weeks of radiation. This required the removal of three of my teeth on the left side. This was done all at one time and frankly it was the most painful thing I endured.

The radiation was another story unto itself. The six weeks (five days a week) of radiation was not so bad at first. I didn't have any side effects for the first 10 or so treatments. Then it hit the fan. I developed a strong metallic taste in my mouth and everything tasted horrible. This happened the day before Thanksgiving. I continued treatment until Dec. 28th 2004. As a result of the treatment I developed ulsers in my mouth and had a difficult time eating. I lost 50 pounds. All in all I wouldn't wish radiation therapy on my worst enemy.

They tried to talk me in to inserting a feeding tube, but I told them no way. Even though I lost from 197 down to 147 pounds, 30 of the 50 pounds was weight I needed to lose any way. I did find out I couldn't maintain my weight by drinking Boost. Even that was hard to get down.

In January of 2005 I decided to join a health club, which I did and started working with a personal trainer. He helped me with not only regaining my strength, but with my nutrition also. He got me started on a supplement called Cytogainer-made by Cytosport. Since I joined the health club and started taking supplements I've gotten myself back into best shape (170 lbs.) I've been in since high school (I'm 61 years old). I would highly recommend it.

Ive had several check ups since my last radiation treatment and all is well (at least for now). My doctor says I'm her recovery poster boy. My radiologist says in his 13 years at MDA, he has not seen anyone recover as fast and as well as I have.

For any body faced with similar treatment, I would highly recommend the use of liquid supplements such as Cytogainer during your treatment to maintain your weight and to regain your health after treatment, join a health club and work like your life depends on it. It does!!

Ed, I read you are a Viet-Nam vet well Charles is also we just got back from DC and there they did surgery on his tonsils, neck (tumor), lymphnodes and muscle. We are looking at 8 weeks of chemo and radiation. He will be doing radiation from an IMRT machine have you heard anything about this type of radiation? Hope all is well with you. Thea

Would like to know more about this particular cancer which mine is coming from somewhere in the throat but they've done 27 byopsys and cannot find the primary. There is a large mass on the right neck. They have suggested Radiation of the entire throat area, sinus cavities 5 days a week for 6 to 7 weeks and
Chemo I.V. drip on Monday and wear a pump the rest of the week. 6 to 7 weeks. In addition I have atrial fibulation, high blood pressure, collesterol problems and am on blood thinner.
I believe in quality of life not just quantity so I want to live the time I have left as active as I can be. I just want to know if there is a chance the treatment will allow me to have that style of living. Also, don't know what the recovery rate is under these conditions. I have been on a no sugar and no carbohydrate diet for 4 days and some supplemental items that don't interfere with my heart, blood pressure or blood thinner medicine.

Any help anyone can give will be most appreciated

My wife has scc and is 4 weeks into radiation.
Week 2 was the worst for pain and difficulty eating. Her RadOncs mixed up a "magic mouthwash" consisting of viscous lidocaine, nystatin, and a couple of other things I don't recall. It's sort of like the stuff that you use on babies with thrush (maalox, benadryl, and nystatin). She gargles with that as needed (we've killed about a quart of it so far even though she says it tastes NASTY) She also gargles with a salt and soda solution before each meal. Also, 600 mg Ibuprophen twice a day, AND Percoset as needed.
I think that the important part here is to stay ahead of the pain. If it doesn't hurt, they're more likely to eat....even if it tastes like old wet newspapers.

Keep the faith!

K

I just saw your message. WOw! It gives me hope. I just finished my treatments and the neck dissection at UVa a couple months ago. I have stage 4 tonsil cancer, which had spread to a lymph node on the right side. This node had gotten huge before they chose to biopsy it here in Lynchburg, VA. Just put me on antibiotics for the longest time.

So, you had it on one side, then ten years later...the other? Sounds like you're doing rea weel and that's outstanding! Your positive outlook needs to rub off on me.

How did you know it had come back on the other side? What is your prognosis? Although I realize doctors can never really know. My wife and I had our first child during my treatments. She was 8 months pregnant when I was told I had cancer. It's been a rough ride, but I'm back at work and going strong.

I just wonder about these follow-ups. Do they do ct scans, mri's or anything?

Jon