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Adding chemo to prescribed radiaiton following neck dissection

uvm1978's picture
uvm1978
Posts: 33
Joined: Aug 2010

I had a modified neck dissection 2 weeks ago and 1 out of 20 nodes biopsied showed positive for SCC. They believe the node in my neck (level 2a) began as a surface level SCC on my forehead (removed twice, once in 2003 and again in 2009), both times they thought they got clean margins. Because the positive node had extra capsular spread and because they feel the cancer traveled from my forehead to my neck, I will be starting radiation therapy soon. Today the surgeon also mentioned that they may recommend adding chemo to the radiation treatments. I'd like to hear from anyone who has a similar situation and I am wondering what to expect with the radiation and possibly chemo. It sounds like I may have to make a decision on whether to add chemo or not and I would be very interested in hearing comments on that.

Scambuster's picture
Scambuster
Posts: 975
Joined: Nov 2009

Hi UMV,

While I am no expert in this, it would seem very unusual for superficial SCC from your forehead would metastasize. While SCC are more agressive cnacer than BCC, in skin Cancers they normallly invade local tissue and need to be very advanced before they metastasize.

Did they say you have an unknown primary ???

What did you PET/CT Scan show - assuming you had had one done ??

They would normally give you radiation (preferably IMRT) when they know exactly where to hit, while the Chemo would be used as a back up in the case they are unsure of any other areas that are affected. If the surgery remove all the cancer, then in theory, you shouldn't need either.

Radiation is like a huge 'fly swat' that hits something and kills it. Chemo is like 'fly spray' that fills the room, supposedly killing anything in the room. Just how many flies you have and where they are is the million dollar question.

I had SCC of the tonsil with 2 nodes showing light uptake from the PET/CT, less than a clear indication of cancer but enough to indicate inflammation, so they think the nodes were processing dead cancer cells. I had the surgery to remove the tumor in the tonsil area and 2 or my 3 Doctors said IMRT would be sufficient while 1 of the 3 (the Chemo Doctor) said I should also have Chemo to be sure. It was a difficult choice for me as you are now faced with the same thing. My ENT said due to the location of the tumor, he could not get 'clear margins' which mean 10mm, even though he thought he got it all. As such, he recommended we run with a course of the IMRT.

At the time, I had to make a choice and I opted for the surgery and thyn IMRT and the Chemo. The Chemo they used was Erbitux which is called a Target Therapy and it is not as heavy as many of the other Chemo drugs. I cannot claim it worked or I am better for it but I got through and am now doing well. I feel the Radiation did more damage to me than the Chemo but none of us can prove that. The side effects from Erbitux is a nasty rash for a few weeks. If I had to make the same decision again today, I would be as confused. I chose to hit it with everything.

I also have chosen to change my diet and lifestyle dramatically and so to find the exact reason for my now good health is hard to pinpoint, but my gut feeling is that careful nutrition has been the most important part of my recovery. See my Expression page for more detail.

I am sorry I have no clear answers but here you have my story and what I did.

Regds
Scam

Kimba1505's picture
Kimba1505
Posts: 557
Joined: Apr 2010

These words would tell me to do the chemo in addition to the radiation. My partner, Mark, was diagnosed with SCC left tonsil in April. In May he had a radical neck disection. The surgeon had to do the radical instead of the modified/selective because of extra capsular spread to his neck muscle. He had the option of not doing chemo (not strongly recommended) but decided to throw the book at it. I must say, as he is done with treatment and recovering very well, it is the extra capsular spread to his neck that haunts me and can keep me awake at night.
My thoughts: "Throw the Book"!
Welcome to our boards, and very sorry you find yourself here.
Kim

DJG1
Posts: 122
Joined: Jun 2010

UVM,
I am currently recovering from neck disection and removal of both tonsils, with 33 round of unilatteral rad starting middle of sept. I have elected no chemo. It took me three RO to feel comfortable with treatment options. The first one said rad/chemo, maybe surg. I dont think she even knew anything about me. It seem to me she opened her medical textbook and look up head and neck cancer. I felt like I was another lab rat in her office. The 2nd RO was very knowledgeable and like to toot his horn. I was ok with that as long as he was as good as he said he was. I could not prove it either way. His treatment option was also rad/chemo, but when I said I didnt like his options, he said forgot the chemo and just let me do the rads. This sent up a red flag. Finally the third and current RO listed to my concerns. I told him that I was looking for quality of life, and not quantity of life. I was not afraid of dying, but I was afraid of breathing but not living. We talked about many options and what each option offered and what the trade off were. In the end, because the cancer is on the left side (result of pet scan) we have agreed to do unilatteral radiation with no chemo. I traded about 10% for bilatterial and 10 for chemo%. The trade off made since to me since the return is reduced short/long term side effects and a more rapid recovery. My concern was not to be over radiaed, which some of this site are and have to deal with that outcome every day of their life. Interesting fact is that Canada and Europe practice unilatterial rad regulary for cancer to just one side. Only the US says it is not the best portacal for patients. Makes me belive the pharmacituls are behind this bizzare statement. I also beleive that with life style, and diet change, I can recover the 20% I traded for. The main thing is to make sure you doctors are listening to you. This is your body and you are the only one that have to live or die with the decissions you make. Educate youself and make the right decision for yourself.

uvm1978's picture
uvm1978
Posts: 33
Joined: Aug 2010

DJGI,
Thanks for sharing your thought process regarding radiation and chemo. So you will be starting radiation very soon - I wish you all the best with your treatment.

They are proposing only radiating my right neck since nothing glowed on the PET scan in my left neck. They are still debating whether to hit the forehead and/or parotid gland on the right. Where are they radiating you - neck only? They are considering radiating my parotid because they feel that the cancer traveled through it on it's way from the forehead to the neck node, even though the PET scan did not light up there. They explained that it takes a cluster of a billion cancer cells to show up on the PET - this is described as the small pin hole that is created when you place your 2 thumbs and 2 index fingers all together in front of you. Did they tell you specifically that the survival rate increases by 10% when you add chemo? I don't have any numbers on this yet. They talk about the morbidity of the chemo and I have been struggling to try and put a number on that - I will have lots of questions for them on Wed. Deb

uvm1978's picture
uvm1978
Posts: 33
Joined: Aug 2010

Kim,
Thanks for your note. Yes, it is the extra capsular spread that haunts me as well. I will probably throw the book at it, as you suggest. Would you mind elaborating on Mark's course of treatment - length, frequency of chemo, etc? I am just trying to get my head around it. Deb

uvm1978's picture
uvm1978
Posts: 33
Joined: Aug 2010

Scam,
As you mention, this is an unusual scenario because SCC mets from the skin to the node only 2% of the time. My surgeon at MA Eye and Ear in Boston was very good. I am 2 1/2 weeks post-op and the scar is healing well. I have shoulder weakness, but nothing permanent except a numb right ear.

I did have a PET scan and it lit up only where the infected node was found (I had a biopsy prior to the PET, so I already knew it was SCC). They looked around with a tube down my nose for anything suspicious in the mouth, etc. because that is where the met to the node usually comes from, but I was all clear there. Also, I never smoked. The surgeon also checked my lung, esophagus, etc. during surgery (including taking a biopsy of my right tonsil) and all was clear. So, they strongly believe it came from the forehead, as opposed to being an "unknown primary". The reason for the radiation and possibly chemo was the extra capsular spread. He said he boxed out the node (level 2a), but couldn't be sure that some cells hadn't gotten out.

I am also very focused on good nutrition, exercise and staying stress free. I am lucky in that my employer is telling me to take whatever time I need to get better. Have you heard of an Ayurvedic herb formula named Armit Kalash? Someone recommended it to me.

I am also leaning towards hitting it with everything. How long was your radiation, and how often did they administer the chemo. Can you describe how significant the rash was? Was it just in the head and neck area, or all over? What do you feel was the damage from the radiation?

Thanks so much for your response, it's nice to know someone else out there had a similar experience. Deb

Scambuster's picture
Scambuster
Posts: 975
Joined: Nov 2009

HI Deb,
My treatment went for 7 weeks + I was given and 'Induction Dose' of Erbitux 1 week before they started Rads. This was a double dose.

The Erbitux was given through an IV in my hand and it only took about 90 minutes and I had one does per week throughout treatment. I got a bad acne like rash on my face and neck with sore points at the corners of the nose, bottom of ears i.e. tight points. It looked worse than it felt and started about week 3 and lasted about 2-3 weeks. I used a topical antibiotic and only Sorbolene to wash my face. I had the rash during the bird flu scare in HK so I could wear a face mask :o) It was more for vanity and to stop scaring kids in the street.

The IMRT was given twice a day, 5 days a week. There had to be at least 6 hours between treatments. I had the 'Mask' fitted and X-Rays done to triangulate everything so they know where to hit you. Each Rad session was about 20 minutes and painless. It did occasionally get tough when I started to get sick about week 3 onwards.

I had a PEG installed in week 3-4 as I was losing too much weight. I got Pneumonia and had a pretty rough time and was hospitalized for the last 3 weeks of treatment and a week after. Some people waltz through their treatments and keep working, I wasn't one of them. I was off work for a full 6 months. I had a lot of pain in the mouth and throat, some nausea. Getting the right nutrition in is vital as is keeping fluids in. I was on IV feeds at times.

The worst time was when treatment was over. I went home and lasted about 10 days and was sent back to Hospital in very bad shape. I was heavily depressed and very very sick. I was put on AD's and some other stuff to help me sleep and my condition turned around and I began the long slow climb out of the 'hole'.

My taste has recovered to 80-90% but my saliva only about 20% which is the worst part of the legacy or Rads. I have been doing acupuncture and on a big regime of supplements and a mostly Vegan diet. I am physically feel great apart from the dry mouth. I have a bit of neck soreness and occasionally I feel tight in the jaw but this issues are insignificant. I am meticulous with teeth cleaning and have a toothbrush at work and in my bag. I use a GC Mousse in the evening before bed to protect my teeth due to the low Saliva level.

While I did have a rough run going through Deb, i came out OK in the end. I am very fit and lean now. Hope this helps in your preparation. You can check my Expressions page for more on supplements, diets etc.

Scam

santa6
Posts: 29
Joined: Oct 2009

Just wanted to add that I had identical treatment and post-treatment suffering as Scam. Actually got so bad for about six weeks that I was hoping I would die. Never told my family that, but it was bad. I also had to have a portion of my tongue removed six months out because an ulcer from the radiation would not heal. It was non-cancerous.

The drs told me that if your treatment results from radiation and chemo equal 100%, 8% to 10% of the benefit is derived from the chemo. At decision time soon after surgery, I chose the chemo - for my family, I couldn't justify not trying every possible advantage for success.

Last month(9 months out) I competed in a 105 mile Pelotonia in Columbus Ohio to raise money for the James Comprehensive Cancer Center OSU(I was treated there). I have a little trouble swallowing at times and my saliva is not great(improves greatly during vigorous exercising) and I am feeling great.

Don't let yourself get down during and after treatment - although depression is very common and you need to get treated for that. As bad as you think you are - you WILL recover and you will feel great again.

Jimbo55's picture
Jimbo55
Posts: 572
Joined: Jun 2010

Hi UVM, I was diagnosed with base of tongue SCC stage 4 and had a ND to remove 3 nodes. I also had the choice of radiation alone or in combination with chemo (cistplatin). It was explained to me going the rad/chemo combination route would increase the chances of being 'cured' by 10-15% over the radiation alone. For myself, I didn't think twice and opted for the radiation and chemo. If it will increase my chance of survival, I'm all for it. I am one of the more fortunate ones in that treatment wasn't particularly bad for me. I am 4-1/2 weeks out from treatment now and feeling better with each passing week. Having been through it once, I would make the same decision again. Cheers

Jimbo

susan0803's picture
susan0803
Posts: 90
Joined: Aug 2010

Hi,
This is my first post, so bare with me.

My husband was diagnosed with SCC in 6/7 lymph nodes in his neck at the end of July. At the time it was primary unknown. He had his tonsils removed on 8/27 and the ENT found a small (< 2 cm) tumor on the left tonsil as well as suspicous 2 other lymph nodes (left tonsil and lymph nodes lit up on the petscan).

We will probably be following the rad/chemo combination, since that is what the ENT at Slone Kettering is recommending, and I read also on the web, it increases chances of cure. My husband has been a strict vegan (very healthy one) for the past few years and never was a smoker and only a light drinker when he was younger, so we are crossing fingers that all of that will help us get through this ok. (It is not 100% confirmed yet to us, but he probably got the SCC from HPV.)

I am posting this, not so much as to provide any more insight (since at this point I really don't have any), but to say mostly how much I appreciate this discussion board and all of the informative and encouraging posts.

When we start the chemo/rad treatments (probably later in Sept.), I will probably post more to get more input since I know that's when I'll need it the most.

Thanks very much.
Suzanne

Skiffin16's picture
Skiffin16
Posts: 8052
Joined: Sep 2009

Welcome to the H&N Family Suzanne and your husband and family as well. Sorry for the diagnosis, but you wouldn't be here if it wasn't in the grand plan.

We have a large knowledge base, history, experience, care givers, and current/previous patients.

Feel free to particpate and communictae at any time, there's usually someone on here at most anytime day or night...

Best to you and your husband,
John

Hondo's picture
Hondo
Posts: 5608
Joined: Apr 2009

Just to second what John said, welcome to our family here on CSN

uvm1978's picture
uvm1978
Posts: 33
Joined: Aug 2010

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

susan0803's picture
susan0803
Posts: 90
Joined: Aug 2010

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

luv4lacrosse's picture
luv4lacrosse
Posts: 1369
Joined: Jul 2010

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

uvm1978's picture
uvm1978
Posts: 33
Joined: Aug 2010

Jimbo,
Thanks for your note and I am glad you are doing well. Just curious, what were the side effects of your treatment and how often did they administer the chemo? Was it a 7 week treatment plan? Deb

fisrpotpe's picture
fisrpotpe
Posts: 1317
Joined: Aug 2010

I find it concerning that they are not committed to doing one or the other. I would ask them to get together and decide.

The radiation is the work horse in killing the cancer. In my opinion adding chemo to the radiation is that the radiation then will give more bang for the buck. If your going to do the radiation I personally would add the chemo.

Has your case gone thru a tumor board or is this being handled by one doctor?

Please inform us on what the decision is.

uvm1978's picture
uvm1978
Posts: 33
Joined: Aug 2010

fisrpotpe,
Thanks for you thoughts. Since I am only 2 weeks post-op I haven't met with the radiation oncologist yet, I have an appointment scheduled this Wednesday. The information I posted has all come from my surgeon who will be coordinating with the radiation and medical oncologists. Also, I traveled to Boston for the surgery, but live in CT, so I will most likely be having the radiation and chemo closer to home. They said they want me to do the planning in Boston and then will pass it over to a local cancer center that they feel comfortable with. Since I am right on the CT/MA line and work in Springfield, it will probably be at Baystate (D'Amour Cancer Center). I will keep you posted. Deb

D-Byrd
Posts: 25
Joined: Aug 2010

Hi uvm1978, I was diagnosed with SCC 4 months ago after a golf ball size knot came up on my neck. They did a radical left neck disection with 23 nodes being remove and 3 being positive. Two weeks after surgery they wanted me to do rads plus chemo and I had to research the chemo before I could make a decision.

Cisplatin with rad gives you 8 more percent chance for the cancer not to return in 5 years but more toxicity than Erbitux which I opt for. Erbitux is a man made from a rat gene and gives you an extra 5% chance not to return in 5 years but 2% of the patients have a chance of death on thier first dose.

I am not sure how things are turning out for me because I am 5 weeks out from my last rad and have had not pats or cs's. I hope this helps you a little and I do believe the chemo with rads will give you a better percentage of the cancer not developing in 5 years. I hope thing go good for you and if I can help with anything let me know.

God bless all of you!!!

stevenl's picture
stevenl
Posts: 587
Joined: Jan 2010

Suzanne,

Yes, welcome here and please post with any questions you may have.

Best,
Steve

uvm1978's picture
uvm1978
Posts: 33
Joined: Aug 2010

D-Byrd,
Thanks SO much for this information. It will help me to ask some good questions at my meeting on Wednesday. So are you saying that you opted for the cisplatin or erbitux? Would you mind describing the side effects? The 2% death rate from erbitux is pretty scary, especially when it's only a 5% increase in survival. Do you have any websites that reflect these stats? I am wondering if these drugs are used mostly for SCC patients, or other kinds of cancer as well? Deb

D-Byrd
Posts: 25
Joined: Aug 2010

Sorry UVm I have been on the couch for a couple of days and have not read anything in those days. I opted for Erbitux because of the toxicity and the major side effect is acne.
There are plenty of people around you on your first treatment to bring you back if something happens and do not worry about it. You can google Erbitux and read about it and if you need anything please feel free to ask me. Good luck to you and your decision and do not worry...God will take care of all of this!!!!

God Bless you all!!!

luv4lacrosse's picture
luv4lacrosse
Posts: 1369
Joined: Jul 2010

Welcome to the group.

I am about 4 weeks post surgery and my final treatment plan is not what we originally had planned. First off my one day surgery for the tonsilectomy and neck dissection turned into two seperate surgeries. This was aggravating but my Surgeon was able to get clean margins and most importantly taking the extra time allowed for him to only extract effected tissues without having to take muscles, nerves veins ETC.

After the surgery and final path reports, it was determined due to the aggressive nature of the cancer and how it was embedded into my tissue that he now recommened to do Chemo and to now also radiate both sides of my neck. My decision was to throw everything we could at it now. The side effects for me will be more severe, but long term I will have some peace of mind that this will take care of it once and for all.

How is your health and physical status right now? I am very active and am a powerlifter so I am in good shape and can afford to drop some LBS without comprimising my overall health.

If you are comfortable with the mindset of taking the worst pain all in one dose and be done with it, then I think an all out attack is the right thing to do.

Best of luck, you will get through this.

Mike

rt29781
Posts: 8
Joined: Sep 2010

My wife had 16 lymph nodes removed from her neck by surgery, and 3 of them were malignant, at the end April 2010. After the initial biopsy and much internet research we pushed the oncologist to do a HPV test on the biopsy sample. At this stage the surgeon was recommending radiotherapy and erbitux. Then we went to see the radiotherapist and he initially thought to use cisplatin with radiotherapy but after the HPV diagnosis he said that he would do just radiation. We were relieved and only time will tell if it was the correct decision. I have to say the biopsy found no extra capsular spread so that was also in our favour. The literature suggests that HPV+ tumours respond very well to radiation alone.

She then had 29 radiotherapy sessions and after 7 weeks is feeling much better.

uvm1978's picture
uvm1978
Posts: 33
Joined: Aug 2010

rt,
Thanks for responding and it's great to hear that your wife is doing so well. My node was negative for HPV, it was positive for P16, P53, P63 and CK5/6 whatever that means? I am reading it off the pathology report. My surgeon also said that the extra capsular spread makes a big difference in my treatment. The problem seems to be that there are no guarantees once the cells are out of the node. Would you mind sharing the side effects from the radiation only? Deb

uvm1978's picture
uvm1978
Posts: 33
Joined: Aug 2010

Mike,
Hi and thanks for your note, I am glad you are doing so well. I am really healthy, except for the cancer. I exercise all of the time, eat well and have a relatively stress free life. As to the lbs - I would be very happy to lose about 10 - to get back to my long overdue pre-kids weight, but wouldn't want to lose too much more than that. What kind of chemo did they give you and how long was the treatment? Deb

luv4lacrosse's picture
luv4lacrosse
Posts: 1369
Joined: Jul 2010

Hi Deb.

I actually start treatment tomorrow. Radiation M-F to both sides of neck and then Cisplatin is to start on 9-13. One dose every 3 weeks. They are having me come back for two additional Saline Boluses for two days after each Sisplatin Treatment as they say the Cisplatin is very hard on the Kidneys. I am only assuming that I will have pretty severe side effects with getting radiation to both sides of my neck, and everything that we anticipated going in has always taken a different turn to fix.

I went to they gym twice last week and probably overdid it as I was almost too sore to go to work for the next 3 days.

I have to learn to dump the "go big or go home" attitude because it does not work when you are sick. I too have a few LBS I can afford to shed, so I am not too worried about the feeding tube. My wife is a Nurse, and her biggest fear is I will contract some type of infection if I become too Immuno Suppressed. She does not want me going near my Gym during treatment for fear of risk of infection.

All the best to you. I look forward to reading about your progress.

Mike

JUDYV5's picture
JUDYV5
Posts: 392
Joined: Jun 2010

I did not have surgery. I was not given a choice whether I wanted the chemo or not. I had scc of the hypophyrnax with lymph node involvement. (The node was large). I went through 35 radiation treatments and 3 rounds of citsplatin. At 7 weeks I was told I was clean. At 3 months I am back to work. I no longer use the feeding tube and some taste is coming back. The bad memories of being so ill on the citsplatin are fading.
I have no regrets.

kimmygarland's picture
kimmygarland
Posts: 313
Joined: Aug 2009

My husband had rads/chemo and is now having recurrence. Let them give it everything they can.... there are no guarantees and recurrence is awful.

Fire34
Posts: 350
Joined: Feb 2010

UMV
I had a somewhat diiferent form of treatment than some here. Mine was 8 weeks of induction chemo with carboplatin taxol & erbitux. Then my radiation was concurrent(at the same time) with chemo(5FU,hydroxyurea & erbitux) radiation was twice daily for 5 alternating weeks.
I also say throw the book at it. My 9 month scan was clean with NED.
UMV was your priamry skin cancer? I had a friend that had cancer on his scalp that spread to his lymp nodes as well.
Best Wishes & Prayers on whichever decision you make
Dave

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

Welcome to you both.

UVM- I take it you had a Pet Scan? As for Chemo with the rads- recommended. This is C, UVM, and the only way to fight the fight is to error on the side of the aggressive. I would advise that if your Onco thinks it is the best route- then take that route.

UVM, and Suzanne and husband- this is 2010, and H&N can be treated successfully. You will survive this, and find that life beyond treatment is more than just acceptable. Nobody here will tell you the road is easy, though several can say their's was a lot easier than most of us. Keep your Drs. in the loop as to how you are physically handling it, and stay in the Positive, knowing you will survive this thing. All you gotta do is

Believe

kcass

susan0803's picture
susan0803
Posts: 90
Joined: Aug 2010

Thanks everyone for welcoming me (and my husband) to this site. I've been telling everyone how helpful it has been! All of you are awsome people and I can't believe how knowledgable everyone is. I know I am really going to need the help more and more when my husband's treatments start (and help with the feeind tube issues if he gets one). Not sure how we are going to get through it, but I know that posting here is certainly going to help.

(BTW - my husband was able to eat a bean taco today (with a lot of water - but still...) - 1 week after the tonsillectomy.

Thanks again!
Suzanne

kimmygarland's picture
kimmygarland
Posts: 313
Joined: Aug 2009

Seems like you won't - but you will. It's the hardest thing my husband and I have ever been through, but you'll make it.
Stand tough and hold each other up on the bad days.

uvm1978's picture
uvm1978
Posts: 33
Joined: Aug 2010

kcass,
Yes, the PET scan only lit up at the one level 2a node. They scanned my head, neck and whole body. I was pretty excited about the results until I learned of the extra capsular spread. Thanks for your good wishes. Deb

uvm1978's picture
uvm1978
Posts: 33
Joined: Aug 2010

Dave,
Congratulations on your clean scan, that's great! So you had 8 weeks of chemo prior to concurrent radiation and chemo - wow - that is different than what everyone else is describing, but obviously it worked. Was there something that was significantly different about your neck dissection or condition? How was the treatment?

Yes, they strongly believe my primary was the forehead - what started out as a little red patch of skin, and never looked like anything more serious, even after they cut it out twice. The second reoccurrance should have been the warning sign. Deb

uvm1978's picture
uvm1978
Posts: 33
Joined: Aug 2010

Kimmy,
I am sorry to hear of your husband's relapse. Will he go through another round of the same? I wish you and your family all the best. Deb

uvm1978's picture
uvm1978
Posts: 33
Joined: Aug 2010

Judy,
Thanks for sharing your story and I am glad you are doing so well. Did you have a feeding tube as a result of the chemo, or because the node was so large? Was the illness mostly nausea, sore throat, etc. as I have heard others mention? I am trying to gear myself up for the therapy and I think it will help if I understand what to expect. Deb

Jimbo55's picture
Jimbo55
Posts: 572
Joined: Jun 2010

Hi Deb,

My treatment was 7 weeks. The usual 5days/wk of rads and also the 3 injections of cistplatin, 1 every 3 weeks: so week 1, week 4 and week 7. The side effects for me were of a milder form: the dry mouth, difficulty swallowing, mouth sores, loss of taste, fatigue, weight loss, low blood pressure. For the better part of the treatment, up to week 5/6, I did really well. It was the last week of treatment and the 1st week of recovery that were most difficult. I didn't need the pain meds, nor did I have PEG or Port (wasn't trying to be a hero, just never needed them). I tried to maintain daily moderate exercise, usually a 30 minute stroll, which I believe helps with the fatigue issue. For the mouth sores, which were pretty minimal for me, I credit the baking soda and salt gargle, also the L-Glutamine. The soda/salt gargle also helps with the dry mouth. My weight went from 180 down to 160 and even though I am eating much better now, my weight is still down at the 160 mark. Cheers

Jimbo

uvm1978's picture
uvm1978
Posts: 33
Joined: Aug 2010

Jimbo,
Thanks for your response. I am heading to my apt in Boston tomorrow morning and feel well prepared with questions thanks to all of the support I have received. I plan to exercise as long as possible and I am glad to hear that's a viable option depending on how things go. Your tips on dry mouth are helpful and I will start the gargle routine as soon as I am noticing I need it. I will also check into the L-Glutamine. I hope to shed a few pounds also, this is not the preferred kind of diet of course, but I might as well make the best of it. Take care, Deb

JUDYV5's picture
JUDYV5
Posts: 392
Joined: Jun 2010

My biggest complaints during treamtent were nausea and thrush. I had to get IV fluids every three days because I was so dehydrated. I never really had a sore throat. I never had skin issues due to the radiation. I didn't lose my hair - it just thinned. I now use a leave in condtioner because the hair did get really gross dry. I did have the problems with dry mouth, excess saliva, and the constant thrush. I didn't have a choice with the tube - hated it at first. However, I got used to it and did use it a lot.
I lost 15 pounds. I was thin to begin with. Everybody handles things so differently it is difficult to know what to expect other then the road ahead will be hard. Sorry that you had to join our group. - Judy

uvm1978's picture
uvm1978
Posts: 33
Joined: Aug 2010

Judy,
Thanks for responding. It sounds like this is going to be a very difficult way to lose those extra 10 pounds I was hoping to shed :-) Do you have any food suggestions - I was thinking lots of fresh fruit smoothies. I am sorry to be joining the group as well, but glad that there are lots of nice people like you out there willing to share information. Have a good night. Deb

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

UVM,
See what a great site this is? I've been into myself for a few days, and it made me happy to see how many folks have already reached out to help you. Here's my two cents:
I had base of tongue primary tumor, spread to two lymph nodes. All docs I spoke with (surgeon, two radiology oncologists, and one medical oncologist) agreed that surgery alone was not a recommended option for treatment. Suggestions were chemo radiation then surgery, chemo radiation with possible surgery afterward, and induction chemo, then chemo radiation with possible surgery afterward. I figured I'd go with the big guns, too. I did 9 weeks of induction chemo with three chemotherapy drugs (cisplatin, taxotere and 5-FU) then 7 weeks of radiation Monday through Friday with one chemo drug (carboplatin) on Wednesdays. I felt bad part of the time, but nothing like what's depicted on too many TV movies. Our docs today do a really good job of having meds in the arsenal to whip out whenever side effects kick in. I had to be hospitalized a week before Christmas for neutropenic fevers (fever with immune system compromised - low white blood cells). That day, before I got sent to ER, and admitted to the hospital, I felt fine - I shaved my head, and went shopping earlier in the day. I lost most of my hair (taxotere - I had to shave off what little remained), but that didn't bother me nearly as much as I thought it would. My major side effects varied throughout treatment. Most were handily beat back with meds. My three month check up showed an all clear on my primary tumor and one lymph node with minimal (very likely normal, non-cancerous) activity in one node. I did not spend all my time during treatment suffering, but did have some bad moments, and some uncomfortable times. I also had lots of times that I felt fine or pretty good.
At this time, it looks like surgery will not be needed. I am very glad I went with the "throw everything at it" approach. I hope your treatment goes well - keep us posted.

Skiffin16's picture
Skiffin16
Posts: 8052
Joined: Sep 2009

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

susan0803's picture
susan0803
Posts: 90
Joined: Aug 2010

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

Scambuster's picture
Scambuster
Posts: 975
Joined: Nov 2009

Hi Suzanne and Joe,

I went Vegetarian and now am pretty much Vegan. I am 10+ month post Tx. I had a PEG inserted in Week 3 of treatment as I was losing too much weight. I also couldn't tolerate the Ensure type stuff which is 70-80% casein (Milk/animal protein). I found a product called Vitashake by Sunrider which is 100% Plant based and has 200 Cals per Satchel. I mixed mine with organic Rice Milk (You can use Hazelnut, Oat or Soy milks just was well) so with 200-300ml of the milk to mix up the shake, each serve was 400 Cals. 4-5 shakes a day will maintain weight and the Vitashake has all the goodies you need. I put mine through the PEG with a Gravity Feed Cup. When I got quite sick late in treatments (Rads and Erbitux) I sometimes only got 3 in a day. If you do small feeds and often, you will be better off as the stomach seems to shrink during treatment or mine did.

It is a MLM product but definitely don't let that stop you buying an excellent product, and one that will get you through this. It saved my life. I still take a shake a day. You will find distributors online or contact Sunrider directly and if you sign up you get a discount (20-25% ??). They come in boxes of 10 in Strawberry or Coco flavors. I also add one of their Vitadopholous satchels (tiny) which does all the good stuff for the gut which I am sure you know about.

I didn't have the opportunity to try the Amifostine but if I did I would definitely have given it a go. Try to keep him moving through treatments with light exercise like walking and squats. If he need pain med (most of us did), they play havoc with the intestine and constipation is an issue. Keeping up the fluids is critical.

Hope his is helpful and I wish you and Joe the best. He will get through. PM me if you need more details.

Scam

Skiffin16's picture
Skiffin16
Posts: 8052
Joined: Sep 2009

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's picture
susan0803
Posts: 90
Joined: Aug 2010

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

Skiffin16's picture
Skiffin16
Posts: 8052
Joined: Sep 2009

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

Hondo's picture
Hondo
Posts: 5608
Joined: Apr 2009

If you can I believe it is worth the cost to take the amifostine, by all right I should not have any saliva at all being radiated twice, but I still have 60% of my saliva glands working.

Take care

Skiffin16's picture
Skiffin16
Posts: 8052
Joined: Sep 2009

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.

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