Prolonged reaction to radiation treatments

Hello I had the cancer on the base of my tongue I had it moved to my lymph node I had chemo from the first of April until August,then I had chemo once a week and radiation everyday until oct.4,2012.Now I went Thur treatment perfectly nausea no vomiting ,but then you know when we start the radiation the nightmare beans I made it all the way then I crashed my whole body decided it had to much I was hospitalized with an infected port(loved my port) then left hospital but had to go back for adrenal failure a couple few week that time and I didn't think a person could live and be that sick but made it through,then BAM thyroid (hypo).Today I could be a picture of health well I'm not I see my drs.all at Vanderbilt my he'd oncologist is a graduate of Yale with honor the whole 9yards I have stomach problems I can barely eat I have so much to tell but on top of this my husband of35yrs suddenly passed in my den on March 22 doesn't it say that God will never give us more then we can bare so,placing my faith in the paper that has gotten me this far yes the debilitating fatigue is my campanion now although they are working on that,ask me anything if I can help you I didn't have anyone to ask yes I felt like hell the first few months got better the BAM more after effect crazy cancer

My husband made it about half way w radiation and could dono more. He had sores on his face and inside of his mouth. It got worse after he quit -- you continue to "cook." I don't know how he survived but he did. That was two years ago. Now he has cancer of larynx and must have the whole larynx removed in a big big operation. My only recommendation would be to get a peg tube if this continues. My husband lost 100 pounds and I'm quite sure he would have died without the tube. Not only cane get nutrition but his pills can goin there, too. If you are continuing to lose weight I'd recommend it. I feel terrible for you just knowing the suffering and pain. I hope somebody can help you.

HI Robin:
They really beat you up with 8 weeks of chemo and 7 weeks of radiation. So 7 weeks out with still some issues doesn't seem out of the question. Keep in mind that cancer itself is unique to the patient and the recovery is unique to the patient as well. I've come across head & neck cancer patients that entered short distance triathlons 6 months out of treatment. But they were in suberb shape before treatment. So expectations are hard to manage - just have to keep adapting.
As for me, I had 6 weeks of radiation - once a day for four weeks then twice a day for two weeks - then was also hit with 2 rounds of cisplatin. I was a wreck. I didn't really start feeling somewhat better until 2 months out but it took about 6 months to achieve any sense of normalcy. I was using a PEG tube and didn't remove it until 6 months out when I could finally get solid food down and keep my weight stable. The side effects continued to abate until about 5 years out when they plateaued.
Cancer recovery is not something we're used to. We've gotten sick before, took some antibiotics, and were feeling better in a few days. But cancer is different - recovery is something you have to think of in weeks and months, not days. So try not to get frustrated.
By the way, often the standard landmarks are 2 years out of treatment and your risks drop dramatically. 5 years out, and your risk drops to that of the general population. So you've got a bit of road to travel yet.
I'd also suggest you get in touch with SPOHNC. Aside from the support info they can provide, they also have a matching system where they'll pair you up with someone who has your type of cancer and treatment. It provides some excellent common ground for discussion one-on-one in time. I highly recommend it. Full disclosure - I work as a volunteer chapter facilitator for them out here on Long Island.
Anything else you need, please don't hesitate to ask. There's nothing intuitive about cancer - it's all about patience and knowledge. And a good sense of humor wouldn't hurt.
- Jeff

I had a similar course of treatment as did the previous poster, Jeff K, but I am only 9 months out. I didn't start to feel somewhat "normal" until about 6-7 months post-treatment, but still have some lingering pain (like when I yawn, for example) and some eating issues (like many things taste like crap, so I have to force myself to eat). Overall, however, I am doing really well, am extremely grateful to have made it through the most difficult of cancer treatments (I had breast cancer 12 years ago and can say that it was a walk in the park compared to HNC), and am very hopeful about remaining healthy. I hope that you get to feeling better soon. Give it some time and be patient with yourself.

Thank you so much for your post. I now know that what I am looking for, a time line of what to expect, isn't something that can be given to me. As you say all reactions to treatment are different. It really messed with my head when my doctors didn't know what to tell me because they had never seen someone with reactions as far after treatment as mine. Now that I am hearing it is not all that uncommon, I feel like I am up for the fight; I have a better idea of what I need to push past. I will take your advise and look into SPONHC. I applaud your volunteer work. Your post helped me.

Thank you for your post. I'm so sorry that you had to go thru this crap twice. Ugh! Now that I am hearing that feeling of 'normal' (that I was thinking would happen weeks ago), is still just a matter of months away, I can see the light at the end of the tunnel. In the past week I have been eating a bit better, as you say forcing myself, and I finally saw the scale stop going down, today. Thank you for taking time to post.

Wow, I can't believe what you have had to go thru. I believe that about God not giving you more than you can handle. But he sure is testing YOU.I'm sorry for your loss and hope you are able to get your fatigue under control. Thank you taking the time to post.

I asked for a feeding tube after treatments had ended, and since no one had ever asked for one that late, they put me off. My progress has been a bit of up and down, so when I got a little food in me, we put away the thought of the tube. I guess the radiation didn't hit me as hard as your hubby, Wow. I seemed to have found a new inner strength this past week. I am forcing food down my swollen, hurting throat, where as weeks ago I didn't. I am being a better patient to myself and just may get thru this hard part in a few months. Thank you for taking time to post,

I suggest you ask for a dietitian to assist you with this. Your hospital should have one on staff who is experienced with head and neck issues. If not you may reach out for a distance (virtual via WebEx) from UCLA Simms/Mann Integrative Oncology at http://www.simmsmanncenter.ucla.edu or by calling 310.794.6644

I don't like saying things about doctors but I would think they were full of shit. The same exact thing happened to me. About 32 months after treatment that I thought my body handled greatly wound up a mess three months after. I had some necrosis in the back of my mouth which formed a whole and the pain was so bad that I had to make an emergency appointment which visiting NY. I addition I also developed dysphagia.I eat very limited things as I can not swallow meats or anything that does not have a good chew level as I call it., Chew level is something I termed so my friends could understand, Being I have dysphagia I have to chew everything until the people I am dining look like they are going to fall asleep. Joking...a food has to keep its flavors till the chewing is done and I can swallow it. This does not work well for meats or chicken as they get a cardboard taste. I wound up eating macaroni and grated cheese for breakfast lunch and dinner. That lasted over a year., Then I remember a dish my great grandmother used to make it was called noodle Koogle. It's mainly egg noodles and fruit along with sugar and something else. My husband makes it for me so I haven't paid attention. It delicious. As far as the macaroni I lost a lot of weight and my doctor had put on my record that I had unexplained weight loss, however, when he sees me this month he is going to wonder what happened to me as the new dish put around 15 ibs in a month for me..I also can eat pancakes so I try to have the protein pancakes that are now available at local stores and Amazon..they taste great. I just could not live with a tube in my stomach to eat. I am going to experiment with a lot of different foods and see if I can come up with 2 weeks of easy to eat meals that will all have a high chew value. I will let you guys know if I ever finish it. If anyone has a recipe that they would like to donate, that would be very kind.