Adding chemo to prescribed radiaiton following neck dissection
Comments
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Radiation/ChemoDJG1 said:UVM,
I am currently
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.
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. Deb0 -
Radiation/ChemoJimbo55 said:Radiation and Chemo Here
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
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? Deb0 -
Radiation/Chemofisrpotpe said:Options
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.
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. Deb0 -
Radiation/Chemosusan0803 said:will probably do radiation and chemo too
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
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? Deb0 -
Radiation/ChemoD-Byrd said:Erbitux and Radiation
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!!!
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? Deb0 -
Radiation/Chemoluv4lacrosse said:ADDING TREATMENTS
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
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? Deb0 -
Radiation/ChemoJUDYV5 said:No surgery
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.
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. Deb0 -
Radiation/Chemort29781 said:HPV+
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.
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? Deb0 -
Radiation/Chemokimmygarland said:Hit It Hard with Everything They've Got
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.
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. Deb0 -
Radiation/ChemoFire34 said:Radiation & Chemo here also
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
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. Deb0 -
Radiation/ChemoKent Cass said:UVM and Suzanne
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
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. Deb0 -
My Treatment - IMRT + Erbituxuvm1978 said:SCC to the node
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
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
) 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.
Scam0 -
Erbituxuvm1978 said:Radiation/Chemo
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
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!!!0 -
Radiation/Chemouvm1978 said:Radiation/Chemo
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
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
Jimbo0 -
Debuvm1978 said:Radiation/Chemo
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
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. - Judy0 -
TREATMENTuvm1978 said:Radiation/Chemo
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
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.
Mike0 -
Thanks for the infoJUDYV5 said:Deb
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
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. Deb0 -
Rad/Chemo side effectsJimbo55 said:Radiation/Chemo
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
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, Deb0 -
Same hereScambuster said:My Treatment - IMRT + Erbitux
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) 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
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.0 -
Hello
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.0
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