Six weeks after treatments are over and feeling the "worst ever"

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Six weeks after treatments are over and feeling the "worst ever"

by JeenBean on Sun Sep 18, 2016 03:59 AM

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Hi All,

My husband finished 35 rounds of Rads and 7 chemo with CarboTaxol on August 1st and while weeks 1 and 2 after treatment were no picnic, he slowly after that started improving - able to eat yogurt and soft mushy cereal etc...

Then he seemed to hit a wall - his pain level doubled, his tongue felt on fire alot, and now he can barely eat.  The NP's seem to think it is just that the radiation took a while to catch up to him, but we are so frustrated as we did not expect this.  I felt he had thrush which i know can be painful, but since they gave him diflucan and swish and swallow "majic mouthwash" with nystatin, they are discounting that this could still be a problem.  Our 9 year old did have a throat-related virus, but if my spouse has it now and this is the cause of all the pain, how can he fight this virus when his pain level is so high and nutrition hard to get in him right now?  They tripled his morphine recently and still high pain.

Anyone else ever have this happen? Ever have thrush that would not go away?  Or delayed pain weeks after end of treatment?  Any other possible reason why this is happening you think?

We are so frustrated and perplexed...

RE: Six weeks after treatments are over and feeling the "worst ever"

by ScttFrancis on Sun Sep 18, 2016 04:26 AM

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First, am am sorry you both are going through this! There is a delay after completing radiation that is very, very hard. I the radiation accumulates and combined with chemo becomes very poisonous all at once. This stage is just pure endurance, find something that works well and keeps pain down, I used fintenol (sp) patches with oxy. The key is to keep moving and eating as much protein as he can. I was on a feeding tube so I had to keep pushing can into my body (automated feeding tubes are the way to go.

RE: Six weeks after treatments are over and feeling the "worst ever"

by Sdurnell on Mon Sep 19, 2016 06:55 AM

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Does he have a feeding tube?  If so he may need to rely more on it until he gets the pain under control.  And has he gotten scoped by his ENT or will he be soon?  This might reveal what the problem is.

I didn't have a great deal of pain after my treatment ended but I did have more and more trouble swallowing, with the final result several months out that I couldn't swallow anything at all.  So I know that things the radiation started can continue for quite some time afterward.

I know it's hard, but recovery takes a long time and can be very slow.  Best of luck to both of you as you travel through the healing process.

Susan

RE: Six weeks after treatments are over and feeling the "worst ever"

by JeenBean on Mon Sep 19, 2016 12:11 PM

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We are seeing the doc again today and I think he is ready to admit to needing a feeding tube unless they can tell us what is going on...  He did get scoped and the ENT saw no abcesses or anything but said he was extremely raw from the radiation burns...

- Jeenie

RE: Six weeks after treatments are over and feeling the "worst ever"

by carodza33 on Tue Sep 20, 2016 04:40 PM

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I was all stoked that my treatment ended, then felt increasingly worse for over a few month.  Ended treatment Feb.3rd, felts horrible for 3 months.  Then biggining of May went to work part time, June felt really good and its been good ever since.  I was extremely frustrated and felt my situation was unusual, but on here we learn each person has their own journey.  I would get the docs to get the pain under control and ride it out.  Believe it or not, it eventually gets better.

RE: Six weeks after treatments are over and feeling the "worst ever"

by Atoms on Wed Sep 21, 2016 08:54 PM

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Post treatment is rough for a long time. Pain meds when needed. Physical therapy for weak muscles when you feel better. I love my feeding tube. In my case I'll have it forever, but I strongly recommend it for people who are having nutrition problems. Significant improvement in health,

RE: Six weeks after treatments are over and feeling the "worst ever"

by Sdurnell on Thu Sep 22, 2016 09:40 PM

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On Sep 19, 2016 12:11 PM JeenBean wrote:

We are seeing the doc again today and I think he is ready to admit to needing a feeding tube unless they can tell us what is going on...  He did get scoped and the ENT saw no abcesses or anything but said he was extremely raw from the radiation burns...

- Jeenie

Jeenie,

If his throat is quite raw that would explain the pain.  It can make it almost impossible to eat, especially if he has trouble tasting as well.  I understand that no one really likes the idea of a feeding tube, at least at first, but there comes a time when one is needed for many of us.  It happened to me in the middle of treatment.

We just need to do whatever it takes to heal and get back to the lives we loved before we got sick.  It's never quite the same after H&N treatment, but it's surprisingly good.

Best to you both,

Susan

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