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    sideoats wrote on Barbara's wall

    Thanks for responding. It seems most everyone has something to contribute for trying to put the peices together for this complicated situation. I attended our support group meeting for SPOHNC last night and they pretty much agreed that these issues are present for at least 2 years and often 3 years. The fatigue is the wild card in that there is not an obvious reason or solution. In other words it may linger and be erratic for a long time. Thyroid meds may get the numbers back into the normal range, but age and treatment may still keep fatigue as a #1 issue. So we'll try to be more patient and look forward to more improvement and with the help of others we will all try to make some sense of this. Wishing you luck in all that you are dealing with. It is indeed, "one day at a time".

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    sideoats wrote on GregP_WN's wall

    Thanks for responding and for the reminder to keep water at hand. It seems most everyone has something to contribute for trying to put the peices together for this complicated situation. I attended our support group meeting for SPOHNC last night and they pretty much agreed that these issues are present for at least 2 years and often 3 years. The fatigue is the wild card in that there is not an obvious reason or solution. In other words it may linger and be erratic for a long time. Thyroid meds may get the numbers back into the normal range, but age and treatment may still keep fatigue as a #1 issue. So we'll try to be more patient and look forward to more improvement and with the help of others we will all try to make some sense of this.

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    sideoats asked a questionHead & Neck/Throat Cancer

    Post radiation side effects.

    4 answers
    • Barbara's Avatar
      Barbara

      I finished radiation on September 14 and felt so elated. All the information I had read about radiation treatments said 'after 4 weeks you should feel back tonormal'. Of course, what did 'normal' mean? I had adenoid cystic carcinoma...a tumor under my tongue. I had had surgery in November of 2010 on the original tumor,lost 1/3 of my tongue, was given the choice then of radiation or not. I had been told that this particular cancer was slow-growing, so at my advanced age of 80, my husband and I decided to forgo the radiation treatments since we felt we could use the remaining years enjoying our lives together. I was on a feeding tube until March, and then resumed eating regular meals. But in April I discovered another lump under my jaw in relatively the same place as the original tumor. Yes, it was malignant and I had another surgery May 16, 2011. This time I was again place on a feeding tube and told I had no choice but to have the radiatioln treatments to try to insure that the cancer wouldn't return. I had misgivings about taking the treatments but with the family's help, went through with them. It is now 7 months since the end of the treatments. Not only have I never felt 'normal' since then but am constantly finding new problems. First, my hair on the lower part of my head did fall out and by now has slowly started to grow back. Instead of pure white like the rest of my hair, it is jet black. That I expected, but what I didn't anticipate was the damaged thyroid as you also experienced.. The swalllowing ability still hasn't returned and I am trying this new treatment called VitalStim,using electrodes to try to stimulate the tongue muscles. It's tough, but I've only had 14 treatments so far. No luck yet. Another problem was lymphadema under my jaw on the left side, opposite the side of the tumor surgery. I am working with an occupatilonal therapist on that problem. Now i have developed severe scalp psoriasis which is requiring additional treatments. The feeding tube is still a constant problem. I guess the main thing is that I don't think feeling normal again is possible, but the determinatilon to do as recovering alcoholics say.....just take one day at a time.....will help! I hate to make this sound like such a downer but truth is as important as false hope.

      over 4 years ago
    • carolk2222's Avatar
      carolk2222

      I am 30yrs post radiation for hodgkins disease having a mass in my chest. I had radiation and didn't have to have chemo. I had terrible burns in my throat and my armpits.
      I have been in remission ever since.
      I started having neck and shoulder pain a few years ago. It was getting worse. I had a hard time keeping up at work. My posture was becoming poor. My head wants to fall forward so I have to work hard to hold it up.
      It dawned on me a couple years ago that maybe the radiation I had maybe had something to do with it. I started looking for answers through my former oncologist and family doctor but they didn't think that it did.
      Last May I decided to google "Muscle deterioration post radiation." Several articles popped up. I couldn't believe it. I printed them off and sent them to my family doc, chiropractor, phys therapist and my former oncologist. The articles talked about studies done on patients that had physical problems 3-30 years after radiation. Muscle deterioration in the mantle field of radiation and dropped head syndrome. The average was 17 yrs post radiation.I was happy to find the information to put the puzzle pieces together about what was happening to my body. The medical personnel agreed the information in the articles fit me to a T. The oncologist wanted to see me physically because he had never heard of such a thing or had any patients affected like this by radiation.
      The oncologist referred me to a neurologist. I had MRI of the cervical and thoracic areas and it showed muscle deterioration. I had an EMG and that was abnormal showing deterioration also.
      This happening after radiation is very rare. There is a small percentage affected like this. The radiation is given differently now than it was 30 yrs ago. So I hope you won't have any of these problems with muscles later on. Just be aware if you do.
      I had to be my own patient advocate to find out what I did.
      I also have the dry mouth and have a cavity about every time I go to the dentist. I also have to be on thyroid medicine since radiation too.
      I have enlightened the town where I live about this. So maybe if someone else comes to one of them with these problems they will have had experience with it.
      Unfortunately muscle cannot grow back. I am in the process of seeking disability.
      Good luck with everything. I wish the best for you.

      over 4 years ago
    • Charlie54's Avatar
      Charlie54

      Experience about 11 hours ago
      Charlie54 shared an experience
      Oh No (Cancer is back/Recurred ): I had a lump appear on my neck in 2005...I never smoked but I did drink for many years....after surgery to remove it, I was told it was cancer squamous cell carsonoma, I was given options to have chemo/radiation, or just watch it ..So I decided to watch it...Well 5 years later another lump appeared and this time it went from one cyst that was removed to 6 lymphnodes and the primary was located at the base of my tongue...So now I had to get chemo and radiation along with surgery to remove the 6 bad (tumor filled) lymphnodes...Treatment began 3 days after surgery, I was given Eurbotux for chemo, which did not make you sick or lose any hair, however you will break out in a terrible acne rash...I had 35 radiation treatments, the first 4 weeks were painfree, but week 5 began the daily pain in my throat/mouth area...I weighed 220lbs for many years now I went down to 168lbs...so I had to have a feeding tube put in my stomach to eat and stop the weight lost, the tube is put in during another surgery. The medicine that help my mouth pain was called by the pharmacy..MiracleMouthWash, I got it by the quart size and you will use it ..all of it...You will get fatigue during treatment and may need help getting to treatments...Now it,s been one year out and I have drymouth and must drink all day long and when eating...my taste has come back but it not the same as prior...spicey is real spicey and because your throat is now damage, you cannot eat alot or large mouth fulls...heartburn is a daily occurrance, I also have lympodema or turkey neck, but I,m 54 so I would have that anyway, it's just a little sooner...Now my summary...Although it's horrible news to get, it's no longer a Death sentence, and you will adjust to the different changes to you throat, mouth, neck, eating is different, taste is different...But through it all...I,m Alive, I feel great...You will get closer to family and friends and co-workers, almost all my caregivers were awesome, family, nurses and doctors, and friends...In my personal experience, Prayer, prayers, and talking to and trusting in God's Son...Jesu.s pull me through ...Your faith is a true healer when you trust in the Lord...I give Thanks to all who went thru the journey with me, my wife, my children, my family, my friends, and the many doctors and nurses all who did there best to help me get thru, and to help me forget the cancer journey...There will be setbacks on your journey, pain<---although tolerable---...and changes to your body that you will have no control over, but the second you finish your last treatment...each day will be better than yesterday, and although your daily thought is Cancer now, when you finish...you will not think about it again, oh sure you may have a memory from something you heard or see on tv, or online, but that's it....One more note: Stay away from the internet for information, as you will read the wrong info and make yourself crazy, thinking of death and dying...an Thank all those who will help you...I hope my story may help and comfort you on this journey, and remember it will all be over soon...Goodluck and God Bless you.....Charlie Fowee...Ohio

      about 4 years ago
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    sideoats posted an update

    I have been out of treatment for 1 year, 5 months and I am still dealing with the usual suspects; 1) fatigue (often & somewhat debilitating) 2) lack of saliva (50% returned) 3) diminished taste (again 50% returned) 4) diminished mental processing. The following questions are mainly for 2 year plus survivers.
    1) Can these side effects still improve or is this about as good as it gets.
    2) My thyroid was damaged by the radiation so I have been taking Levothyroxine for 2 1/2 months and my TSH is back in the normal zone. Can this medication help the thyroid, but make some of these side effects mentioned above worse. The numbers improve, but the fatigue and general lousy feeling still persist. Thanks in advance for any comments.