Adding chemo to prescribed radiaiton following neck dissection

uvm1978 said:

Radiation/Chemo
Suzanne,
Thanks for your note and please do keep me posted on your husband's progress. It sounds like we will be starting treatment at about the same time. I will be very interested to hear what kind of chemo they are recommending to see if it's the same as what is being recommended for me. Good luck and we will talk again. Do you live in NYC? Deb

didn't start treatments yet
Deb et al,
We just had the post-op meeting and meeting with the nutritionist today. The tumor on the tonsil was poorly differentiated, and too close to the muscle and artery and the surgeon chose to do minimal surgery since he knew we were going to have to do radiation anyway. That didn't sound good, but guess we get what we get. Joe is HPV16+, so that at least is a good sign for prognosis.

The nutritionist laid out how many calories, protein and fluids Joe will need. Joe seemed to accept OK that he will be using a feeding tube but I think his strict vegan diet (high in nutrition/low in calories) is going to have to be modified to allow for more calories and protein. I hope he accepts that as well. Any advice here to get more calories for vegans, would be great.

We meet with the radiation oncologist and medical oncologist next week, so not sure the exact treatment yet, but I will let you all know. There probably won't be a port, since chemo will probably be just 3x and radiation the 5x/week for 7 weeks (at least that's what the ENT surgeon thinks will happen.).

I asked the ENT surgeon and nurse about protecting the salivary glands during radiation, and she said nothing really works. But from this discussion board, it sounds like Amifostine may work? Is that correct? Does anything else work?

It seems that protecting the salivary glands is one of the most important things to think about, as far as minimizing the permanent damage caused by the radiation.

If anyone can think of anything else I should ask the oncologists next week, please let me know.

Thanks again !!!! Your help and support is invaluable!
(Maybe we'll run into Michael Douglass who is also being treated at Slone. Although we will be going to NJ location.)
Suzanne

Skiffin16 said:

Exact - Pam M
Exact same treatment for me, nine weeks same three chemos (cisplatin, taxotere and 5fu), then seven weeks same chemo/rads (carboplatin and 35 rads), plus I had amifostine injections daily during the 35 rads. No PEG or surgey other than tonsils....

Fourteen months post treatment, scans and scopes all clear. The tumor (lymph node) dissolved after the nine weeks of chemo.

Right Tonsil, SCC STG III, HPV+ plus one lymph node.

Best,
John

would like advice on upcoming treatments
Deb et al, (I'm reposting this because I accidently replied to an older post.
sorry about that and my mess up - but did want to get people's feedback from this so did it again.)


We just had the post-op meeting and meeting with the nutritionist today. The tumor on the tonsil was poorly differentiated, and too close to the muscle and artery so the surgeon chose to do minimal surgery since he knew we were going to have to do radiation anyway. That didn't sound good, but guess we get what we get. Joe is HPV16+, so that at least is a good sign for prognosis.

The nutritionist laid out how many calories, protein and fluids Joe will need. Joe seemed to accept OK that he will be using a feeding tube but I think his strict vegan diet (high in nutrition/low in calories) is going to have to be modified to allow for more calories and protein. I hope he accepts that as well. Any advice here to get more calories for vegans, would be great.

We meet with the radiation oncologist and medical oncologist next week, so not sure the exact treatment yet, but I will let you all know. There probably won't be a port, since chemo will probably be just 3x and radiation the 5x/week for 7 weeks (at least that's what the ENT surgeon thinks will happen.).

I asked the ENT surgeon and nurse about protecting the salivary glands during radiation, and she said nothing really works. But from this discussion board, it sounds like Amifostine may work? Is that correct? Does anything else work?

It seems that protecting the salivary glands is one of the most important things to think about, as far as minimizing the permanent damage caused by the radiation.

If anyone can think of anything else I should ask the oncologists next week, please let me know.

Thanks again !!!! Your help and support is invaluable!
(Maybe we'll run into Michael Douglass who is also being treated at Slone. Although we will be going to NJ location.)
Suzanne

susan0803 said:

would like advice on upcoming treatments
Deb et al, (I'm reposting this because I accidently replied to an older post.
sorry about that and my mess up - but did want to get people's feedback from this so did it again.)


We just had the post-op meeting and meeting with the nutritionist today. The tumor on the tonsil was poorly differentiated, and too close to the muscle and artery so the surgeon chose to do minimal surgery since he knew we were going to have to do radiation anyway. That didn't sound good, but guess we get what we get. Joe is HPV16+, so that at least is a good sign for prognosis.

The nutritionist laid out how many calories, protein and fluids Joe will need. Joe seemed to accept OK that he will be using a feeding tube but I think his strict vegan diet (high in nutrition/low in calories) is going to have to be modified to allow for more calories and protein. I hope he accepts that as well. Any advice here to get more calories for vegans, would be great.

We meet with the radiation oncologist and medical oncologist next week, so not sure the exact treatment yet, but I will let you all know. There probably won't be a port, since chemo will probably be just 3x and radiation the 5x/week for 7 weeks (at least that's what the ENT surgeon thinks will happen.).

I asked the ENT surgeon and nurse about protecting the salivary glands during radiation, and she said nothing really works. But from this discussion board, it sounds like Amifostine may work? Is that correct? Does anything else work?

It seems that protecting the salivary glands is one of the most important things to think about, as far as minimizing the permanent damage caused by the radiation.

If anyone can think of anything else I should ask the oncologists next week, please let me know.

Thanks again !!!! Your help and support is invaluable!
(Maybe we'll run into Michael Douglass who is also being treated at Slone. Although we will be going to NJ location.)
Suzanne

Amifostine
I can only speak for myself as we all know everyone is different.

My rads MD didn't really endorse the injections. It was my chemo MD that prescribed them. Her reasoning other than possibly retaining some salivary function was to help respiration. Mainly to help relieve the possibility of having the thick ropey phlegm. It must have worked as I never got that or had sever mucous build up.

As for salivary function, I did have an extremely dry mouth for several months. Having to sip water with each bite of food, always having water with me. Thick, white spit that I couldn't spit out of my mouth.

I'm fourteen months out now, and have about 80% or so of my prior salivary reproduction. I can eat normally, bread, toast, crackers, chips, anything, no extra water or fluids needed. I can produce clear, wet, slippery saliva, and spit at will, LOL....

Now whether I would have been like that without the Amifostine, I don't know. I asked my rads MD why he didn't recommend or prescribe, an his thoughts were at best it only salvaged 10 - 15% of saliva reproduction...I'm ummm well, anything is better than nothing.

It does come with a temporary price though. Most that have taken it have some kind of reaction eventually. I don't think that many complete all 35 injections.

For me, it was injected into my stomach around the belly button. It would leave a red itchy welt, then dry out..my skin stayed like that for a good month or two. It also eventually started giving me high or extreme fever swings. About day 30, my temp went to 102.7 in the evening...scary as they say never let it get above 100.5. I called in, they had me take Tylonol. The next day same thing, I called again..didn't know at that point what was causing it. I was only getting rads and Amifostine at that point. During that week-end, I didn't get any fevers. Come Monday after the injection and rads, later, my temperature went from normal, to 96.7 then to 102 again...freaked me out.

So, they had me stop the Amifostine, and no more fevers, finished my last few days, no problems....

Best,
John

susan0803 said:

Amifostine and still more questions
So Amifostine comes with a price (fevers). But it sounds like getting at least some of the injections, may help regardless? I wonder if there are any other products or methods out there.

Regarding the feeding tube, the nutrionist at Sloan said they don't recommend putting anything except the presrcibed formula into it. I wonder how much we have to adhere to that. I will certainly keep asking though. The formula they are going to prescribe doesn't sound too bad. It's TwoCal HN. I will look into the shake that Scam recommends. It sounds very good. Boy - getting enough calories for a vegan is going to be tough..

Thanks much for the advice.
Suzanne

Amifostine
Hi Suzanne,

The fevers were just my reaction, I've read many other reactions....nothing life treating though, I think another was strong nausea.

Eythol (Amifostine) is the only thing that I've really read about that might help. It's not extremely expensive in relation to everything else. I do think it's about $100 - 150/injection. But compared to the cost of daily radiation, it's minimal. Especially if indeed it can salvage some future salivary function.

I didn't have a PEG, but during the last few weeks of rads and next few post. I drank mainly Ensure Plus. To me that gave me the most bang for the buck at 350 calories/can and 16+ minerals and vitamins.

Best to you and the next few months....you can do it, rough diet, but better than the alternative.

John

Skiffin16 said:

Amifostine
Hi Suzanne,

The fevers were just my reaction, I've read many other reactions....nothing life treating though, I think another was strong nausea.

Eythol (Amifostine) is the only thing that I've really read about that might help. It's not extremely expensive in relation to everything else. I do think it's about $100 - 150/injection. But compared to the cost of daily radiation, it's minimal. Especially if indeed it can salvage some future salivary function.

I didn't have a PEG, but during the last few weeks of rads and next few post. I drank mainly Ensure Plus. To me that gave me the most bang for the buck at 350 calories/can and 16+ minerals and vitamins.

Best to you and the next few months....you can do it, rough diet, but better than the alternative.

John

Some better than none
and yes, I believe that some injections would be better than none... So if you can afford it, and it's offered and recommended by your MD's. I think it is worth any benifit you may get from it.

uvm1978 said:

Parotid Radiation
Thanks so much to everyone on this site for all of your feedback. The rad oncologist in Boston feels that I do not need chemo, he also feels that it's ok to do the radiation locally in Springfield, MA. I have not yet consulted with a medical oncologist, but it is looking like no chemo - so I am pleased about that.

My next question is this: The surgeon feels that radiating the neck is sufficient, because by default, the parotid will be hit. One rad oncologist thinks the parotid should be radiated and the other thinks the neck is enough. Also, in my case, since the mets were from the right forehead to the right node, they will only be radiating the right side. Does anyone out there have experience with radiation to only one parotid and what are the side effects of radiation to the parotid vs. radiation just to the neck? It sounds like I am getting off pretty easy here - just want to make sure I don't relapse.

My Treatment
I can only speak for me...but I had SCC STG III, HPV+ and a lyphm node on that same side. They first gave me nine weeks of chemo (cisplatin, taxotere, and 5FU), then seven weeks of concurrent chemo/radiation. Weekly carboplatin, daily rads. Rads were to both sides, rotating around my head basically...a little stronger on the right than the left though.

John

susan0803 said:

Amifostine and still more questions
So Amifostine comes with a price (fevers). But it sounds like getting at least some of the injections, may help regardless? I wonder if there are any other products or methods out there.

Regarding the feeding tube, the nutrionist at Sloan said they don't recommend putting anything except the presrcibed formula into it. I wonder how much we have to adhere to that. I will certainly keep asking though. The formula they are going to prescribe doesn't sound too bad. It's TwoCal HN. I will look into the shake that Scam recommends. It sounds very good. Boy - getting enough calories for a vegan is going to be tough..

Thanks much for the advice.
Suzanne

Amifostine
I did the Amifostine injections, but my doc ordered them stopped half way through - my skin rashes were too severe, he said - he was afraid I'd go into anaphalactic (spelling?) shock. I started with two shots to the backs of my arms (one arm per day), then switched to tummy when arms were messed up and not clearing, then stopped when tummy wouldn't clear. I only got the nausea two days - both days I had not eaten "enough", and felt better after eating. Some folks get fevers and some have blood pressure problems. One of the online warnings reads "potentially lethal rash" - my doc never heard of the skin rash being lethal. Benedryl helps many with mild rash symptoms. One doc I spoke with was set against amiphostine ("no proof it works, and no proof it doesn't help protect the cancer tumors"). My injection nurse said she noticed that patients taking the injections had fewer saliva issues than those without the shots. I'm glad I got the shots I did. I'm five and a half months out from treatment. I only wake up at night now when nature calls, not because of dry mouth. I still drink more than I used to, but there are times my mouth feels almost normal. I'm sure many here can appreciate the notion that when I spit, it almost always clears my lips. The only other thing I've heard of helping with saliva is moving saliva glands - I've only seen a couple of folks who've done this.

susan0803 said:

didn't start treatments yet
Deb et al,
We just had the post-op meeting and meeting with the nutritionist today. The tumor on the tonsil was poorly differentiated, and too close to the muscle and artery and the surgeon chose to do minimal surgery since he knew we were going to have to do radiation anyway. That didn't sound good, but guess we get what we get. Joe is HPV16+, so that at least is a good sign for prognosis.

The nutritionist laid out how many calories, protein and fluids Joe will need. Joe seemed to accept OK that he will be using a feeding tube but I think his strict vegan diet (high in nutrition/low in calories) is going to have to be modified to allow for more calories and protein. I hope he accepts that as well. Any advice here to get more calories for vegans, would be great.

We meet with the radiation oncologist and medical oncologist next week, so not sure the exact treatment yet, but I will let you all know. There probably won't be a port, since chemo will probably be just 3x and radiation the 5x/week for 7 weeks (at least that's what the ENT surgeon thinks will happen.).

I asked the ENT surgeon and nurse about protecting the salivary glands during radiation, and she said nothing really works. But from this discussion board, it sounds like Amifostine may work? Is that correct? Does anything else work?

It seems that protecting the salivary glands is one of the most important things to think about, as far as minimizing the permanent damage caused by the radiation.

If anyone can think of anything else I should ask the oncologists next week, please let me know.

Thanks again !!!! Your help and support is invaluable!
(Maybe we'll run into Michael Douglass who is also being treated at Slone. Although we will be going to NJ location.)
Suzanne

CALORIES
Im am not a vegan, and at this time do not have a feeding tube. I too try to keep myself in good shape and try to watch what i put into my body. My Doctors and Nutritionist both say even bad calories are good calories when you are possibly looking at massive weight loss. I am a competitive powerlifter and a a result am pretty solid in body mass. In early July i weighed in at 238 lbs, 5'9" in height. I am currently 212 lbs. I have been using mass building protien shakes that I can make that would have up to 900 calories in one 12 oz glass. NOTE: Nutritionists say to watch the amount of L chain amino acids the protien powders have as the L chains can be hard on your liver which is already taxed with all of the medicines and necotic pain meds. My neighbor is also a nutritionist and she hooked me up with a product made by Carnation, "institutional use" that has 560 calories in an eight ounce can. I mix this with milk, whey protien powder and either a scoop of ice cream or some crushed ice.

I just had my subclavian line put in today as my first Chemo is Monday and on the way home I ate everthing I could from McDonalds knowing that at this time any calorie is a good calorie. What ever you ingest, try to keep it high in protien.

Hope this helps and any other suggestions for me is appreciated.

BEST!!

Mike