long term side effects of radiation for head/neck cancer

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RE: long term side effects of radiation for head/neck cancer

by butler on Fri Apr 06, 2018 02:09 PM

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Hi Harbour,

May I ask where you live?  If people on this board are willing, maybe we could share where we're from as future resources may be available in your areas that others may not yet be aware of.  Sorry so cryptic, brain fog is bad today,

Sara in MA

RE: long term side effects of radiation for head/neck cancer

by Dlynn1210 on Fri Apr 06, 2018 03:14 PM

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On Apr 06, 2018 1:48 PM butler wrote:

Hi Diana,

Would you be so kind as to ell me your doc in Fl name?  My sister lives in Vero and needs dilation (not from radiation) but would appreciate any recommendations.  She has PsA, I've had BOT cancer 2016, and think I may be headed for a recurrence and live in MA.  I can't find a good dental team that knows anything about h & n isses regarding tooth destruction

Thanks,

Sara

His name is Dr. Joseph Steiniger and his phone number is 727-791-1368. He sees patients at two locations - I go to the Clearwater office - West Coast. It may be a little far for your sister to drive but I sincerely mean it when I say that I would drive to another state if he moved (he appears to be in his fifties so thankfully little chance of that). I didn’t fully appreciate my first ENT but I saw how blessed I had been to have her after my experiences in FL. Something else I love - several doctors own a day surgery on McMullen Booth in Clearwater which is where they can do day surgical procedures. They can also do them at a hospital - your choice but I have found the day surgery center is so much better. 67 It is well organized, less traffic, and more one on one with all the medical professionals involved. You are not just a number but a human being. The gastrologist who did the flexible was pushing me to having a feeding tube put in. I had one for a year post treatment - I was not willing to go backwards 8 years post treatment especially when previous dilations had worked. He told my husband just before the dilation that I would come to realize that I would need one and would be on it for the rest of my life. I have no doubt I would have been on one for life if I had agreed to his inserting one. I was fortunate that I had a radiation oncologist at CTCA who insisted I have dental trays made prior to treatment. My dentist in IL where I lived then even spoke with him so she would know exactly what he wanted. I have had several root canals over the years but so far I have all my teeth I went into treatment with - six back ones were pulled prior to treatment. I try to share with others about the two types of dilation because I found out the hard way eight years after I went through treatment. Rigid dilations do require a level of expertise and not every ENT is qualified. ENTs are ear, nose, and ‘throat’ specialists so it never made sense to me to go to a gastrologist for a swallowing/throat problem. Wishing you and your sister the very best. Diana

RE: long term side effects of radiation for head/neck cancer

by Harbour on Tue Apr 10, 2018 03:00 PM

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I would be very glad to know where you are from. I am from Denmark. I live in Copenhagen. I would so much like to have a second opinion, and to hear about other options than only surgery. I don't believe that it will do me any good. The jaw surgeon said that it heals badly in the radiated area, but at the same time he said that the prognosis for healing after he has done surgery is good. That doesn't make sense to me. And when he said that one of the risks is nerve damage, he added: "But well, you've alrady got one." I don't like that attitude. His colleage left me with that nerve damage in october 2016. 

RE: long term side effects of radiation for head/neck cancer

by butler on Tue Apr 10, 2018 03:49 PM

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Harbour,

Trust your instincts and look for a new team if your insurance allows it.  I'm not certain of your condition, but it sounds like your Dr.s are giving you conflicting advise.  A second opinion never hurts, but bad decisions do.

Good luck

Sara in Massachusettes, USA

RE: long term side effects of radiation for head/neck cancer

by butler on Tue Apr 10, 2018 03:51 PM

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Diana,

Thank you for sharing your Dr. and resources with me.  I have forwarded the info to my sister in Vero.

Sara in MA

RE: long term side effects of radiation for head/neck cancer

by john19382 on Tue Apr 10, 2018 06:27 PM

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Diana. Thank you for sharing, very good information. I finished treatment (30 sessions of proton radiation - post partial neck dissection) in July 2013, so soon to be 5 years out. I still have all my teeth but get cleanings every 3 months as my salivary glands were impacted. Glad to say my salivary glands are much better now....close to 80% of pretreatment (my guess). I also use a flouride gel - almost religiously the first couple of years.... I saw my speech / swallow pathologist in Jan 2016 and will see her again in July. Fortunately I am able to swalllow most any foods. I do need to eat more slowly and chew better or the food gets stuck - especially pieces of chips, popcorn and raisins.... I agree that second opinions are reallly critical. When I was first exploring treatment options one radiation oncologist wanted to put a tube in before the first treatment. Fortunately I found someone else... I did have a tube for about a week following the neck dissection along with 17 staples and 3 drainage tubes... Not fun, but like everyone else here - I am grateful. A little less focused response.... sorry about that John

RE: long term side effects of radiation for head/neck cancer

by Shirleyperez on Sun Apr 22, 2018 03:59 PM

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On Mar 16, 2018 3:01 PM Marmaduke wrote:

Susan: it’s always good to hear your advise and concerns on This thread. I think you remember me from our conversations here. Im stillplanning on going to Alaska this coming August. I am also going to get my feeding tube out next Thursday. I still can’t swallow much but can drink my supplement etc. I’m having difficulty with the tube leaking where it enters my stomach. Surgeon replaced it this last January but it never helped with the leaking. I have to get my bandage changed 2-3 times a day and my skin is becoming red and raw there. Thought it best just to get it out. Wish me luck. I read where you were aware of people being able to keep their teeth after treatment. I too have been able to keep mine so far, but only 2-1/2 years out from treatment. My dentist says my teeth are in great shape and commends me on my care of them. Brushing and flossing much more than I used to do. I also use fluoride trays every night faithfully. The problem I have is my dentist wants to do $3k worth of work in filling replacements and two new crowns. As you can imagine, I am very wary of spending that kind of money if in the end, I’ll lose them anyway. We are both retired and on fixed incomes and very little dental insurance to help pay this. I have heard such terrible stories about those spending tons of money only to have this happen anyway. I know there are no guarantees with this but was glad to hear you have heard of people being able to hang onto their teeth. Any more info would be appreciated. I can barely speak now and may look into help with that. Ive been reading about s speaking valve which may be an option for me. I get so exhausted from trying to talk I can do little else and want to do more if possible. Sorry for the long read. Take care, Donna
Donna If you get any info about a speaking valve, could you pass it on to me? I can’t speak either. What a horrible disease. Can’t swallow, speak, eat .... Shirley

RE: long term side effects of radiation for head/neck cancer

by Marmaduke on Mon Apr 23, 2018 12:08 AM

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Shirley: so sorry you are having much of what I am experiencing. I only know what I’ve been reading on the internet about the speaking valve. I plan on discussing this with my Rad and onc on my yearly visit next month. I read where you have to get a tracheotomy along with the valve. There are risks with these also. I’m at my wits end not being able to speak much at all without getting totally exhausted. Got my feeding tube out a month ago after 2-1/2 years. Still can’t eat much without a lot of choking and coughing. I can drink my supplement though. How long since your last treatment? I’ll be glad to share when I do discuss this with my doctors. You do the same if you learn more about it. What’s left in life but food at my age, almost 70. God bless you and all others dealing with this horrific disease. Donna

RE: long term side effects of radiation for head/neck cancer

by Shirleyperez on Mon Apr 23, 2018 11:32 AM

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On Apr 23, 2018 12:08 AM Marmaduke wrote:

Shirley: so sorry you are having much of what I am experiencing. I only know what I’ve been reading on the internet about the speaking valve. I plan on discussing this with my Rad and onc on my yearly visit next month. I read where you have to get a tracheotomy along with the valve. There are risks with these also. I’m at my wits end not being able to speak much at all without getting totally exhausted. Got my feeding tube out a month ago after 2-1/2 years. Still can’t eat much without a lot of choking and coughing. I can drink my supplement though. How long since your last treatment? I’ll be glad to share when I do discuss this with my doctors. You do the same if you learn more about it. What’s left in life but food at my age, almost 70. God bless you and all others dealing with this horrific disease. Donna
Hi Donna. My last treatment was 5 wks ago. I definitely do not want a tracheotomy, so that valve is out for me. I have a voice but I cannot pronounce my words and like you, it is exhausting to speak. My rad onc says that it is because my soft palate doesnt work. I have read on the internet about a prosthesis, but doesn’t sound encouraging. I do excercise my mouth and tongue although not religiously. Although I am having a lot of problems wallowing, I keep plugging away at it because I firmly believe you have to keep your swallowing muscles moving all day. I have been this route before since this new cancer and drs are amazed that I could eat anything. This time it seems harder, but maybe I’m in too big of a hurry. I am almost 80 and no one loves to eat more than me. I have been on a tube for 6 mos and I hate it. It constantly leaks, I am only able to eat, soups, mash potatoes, spaghetti, but am always trying something new. You are right, this is a horrible disease that takes away your quality of life. But at least I am here. Good luck. Let’s keep each other informed. Shirley

RE: long term side effects of radiation for head/neck cancer

by Sdurnell on Tue Apr 24, 2018 11:21 PM

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On Mar 16, 2018 3:01 PM Marmaduke wrote:

Susan: it’s always good to hear your advise and concerns on This thread. I think you remember me from our conversations here. Im stillplanning on going to Alaska this coming August. I am also going to get my feeding tube out next Thursday. I still can’t swallow much but can drink my supplement etc. I’m having difficulty with the tube leaking where it enters my stomach. Surgeon replaced it this last January but it never helped with the leaking. I have to get my bandage changed 2-3 times a day and my skin is becoming red and raw there. Thought it best just to get it out. Wish me luck. I read where you were aware of people being able to keep their teeth after treatment. I too have been able to keep mine so far, but only 2-1/2 years out from treatment. My dentist says my teeth are in great shape and commends me on my care of them. Brushing and flossing much more than I used to do. I also use fluoride trays every night faithfully. The problem I have is my dentist wants to do $3k worth of work in filling replacements and two new crowns. As you can imagine, I am very wary of spending that kind of money if in the end, I’ll lose them anyway. We are both retired and on fixed incomes and very little dental insurance to help pay this. I have heard such terrible stories about those spending tons of money only to have this happen anyway. I know there are no guarantees with this but was glad to hear you have heard of people being able to hang onto their teeth. Any more info would be appreciated. I can barely speak now and may look into help with that. Ive been reading about s speaking valve which may be an option for me. I get so exhausted from trying to talk I can do little else and want to do more if possible. Sorry for the long read. Take care, Donna

Donna,

Just today read this;  sorry I missed it a month ago!

In the case of your teeth, you might think about getting at least some of the work done.  Fillings and crowns are not invasive, so they don't have you running the risk of infection and osteoradionecrosis and the horrible consequenses of that bone death.  

But I also understand the retirement issues.  In our area there is a dental clinic that some of my friends go to that charges for work on a sliding scale according to income.  You might look into that.  Or you could ask about which work is more urgent and have it all done a bit at a time so it's easier on your budget.

Best of luck to you!

Susan

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