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Loss of full use of hands from chemo

Posts: 11
Joined: Jan 2009

Here is my story. I am also looking for a warrior. I was a kidney donor Dec 2006. Ten months laterI was diagnosed with Sstage 4 nasopharangeal carcinoma. With such extensive testing to be an organ donor for my brother, how could I be sick. Through IMRT radiatin and very aggressive chemo-Cisplatin and 5Fu, I appear to now be in remission. The side effects are numerous, hearing loss in both ears, distoreted taste, no saliva, neuropathy in feetsoI stumbel, but the worst has been weakness in my right arm to wear i can't even lift a bagof flour, I can no longer type,button my clothes, pt on jewelry, I drop and breakthings, and on and on. I am now home and not going to be able to go back to work as I am ...was a h ig hly skilllled administrator. I nam looking for others too who have had such seveeeeeere neuropathy. I can live with all the other side effects, but this one really has effected my daily life. I also have frequent boutsof tongue parlyzation which ofcourse takes away my ability to nspeak forvery shortpeiodsof time. Any one else have that?I know we must nall be strong and look at it as though this was the price we paid to nlive. And I'd rather be alive. I am 49. Sorry about the typos.

slickwilly's picture
Posts: 339
Joined: Feb 2007

Hello and welcome to the site. I am sorry that you are dealing with so many issues. I had Lymphoma in my face 5 years ago. I suffered from some of the same problems you have now. After finishing my treatments I could not multi task. Sometimes I would start saying something and have to stop, think about it and start again. My tongue always seemed to be in the way and I still bite it at times. I had Neuropathy in my toes and fingers that eventually went away. But they are still very sensitive to the cold. I tend to stumble around or run into the edges of doorways. Radiation to my head took care of the little hairs inside my ear canal for a while. I am somewhat better now but still have balance issues as my neck has went to pieces. And we have the loss of saliva glands and taste buds. I returned to work 3 months after finishing treatments and I almost drove myself crazy in the process. It took many hours of doing crossword puzzles to get my brain thinking again. It proubly took a year to stop biting my tongue and for my mental thoughts to flow better. Neuropathy is a whole other issue and can be different with everyone. I know its frustrating when we constantly have to keep fighting for any little improvement. And sometimes the pile of things wrong with us seems pretty high to climb. I hope others will answer your post and have some ideas on the neuropathy. Slickwilly

Craig_Griffin's picture
Posts: 52
Joined: Feb 2009

awsumtime, I was diagnosed with Mass Squamus Carcinoma (tongue base) cancer in March, 2008. I am now also recovering. Have any of your doctors been able to comment on this?- I know that mine don't have much to say about it. But for me right now I have had a drainage tube put in my right ear. It has helped immensely to improve my hearing, and also to get rid of the pressure and swelling to my ear, which was caused by radiation oncology. I am also dealing with no saliva. Green tea with honey is doing well with keeping my mouth wet, and is soothing to my throat. For neuropothy I am getting ready to get treatment at a health food store that will soak my feet in a solution and remove many toxins. But I don't know the results of this treatment yet. 4 months after chemo and radiation my clumsiness is improving. I have become aware that kidney function is a major key to cancer recovery. Perhaps you should get a direct answer from your doctors about how this will affect your recovery. Sincerely, Craig Griffin.

Posts: 98
Joined: May 2005

Hi, Awsumtime:

I, too, have had and still have some of your problems. Your body has been through a "war". You need to give it time to heal. When you are a bit stronger, get into an exercise program. I was fortunate that the YMCA had a program for cancer survivors. They helped me by putting me on a strength building program. Then, later, I did Yoga. Go slowly.

I still have problems remembering or pronouncing words with more than five syllables. Lost my great spelling skills. I can still work, but I did take time off. I've only realized recently that people have a difficult time understanding me sometimes, because my speech is affected by my dry mouth. So, no more public speaking. I can still manage a meeting or two, but need to remember to drink and speak slowing and enunciate.

You will never be the same again, but your body will adjust. Yes, it's good to be alive!

Wishing you a Happy Valentine's Day and many more to come!

Posts: 11
Joined: Jan 2009

I have noticed that it is difficult to get the words out when my mouth is dry. I am unable to work asa the neuropathy has gotten so bad in my hands, I can no longer type or operate a mouse. I went from 77 wpm to 19wpm with errors. I am blessed to be alive, but it is difficult accepting what I am able to do, or can only do with great difficulty. I can barely lift a gallon of milk or sack of flour. I am applying for Social Security Disability at this time. A loss of income is going to be difficult too as I planned to work another 20 years. No more 401K. It's all hard to accept and come to terms with. But. . . I choose to live.

Posts: 5
Joined: May 2016

I have that and just started a new thread. How have you done? Mine is over a year now and no better.

Hondo's picture
Posts: 6643
Joined: Apr 2009




If you can try using a stuff called Ambrotose by Mannatech, after my second treatment of radiation and Chemo for recurring NPC it left me so I could not walk straight, I would try going through the door by hit the door or side every time. Someone told me about Ambrotose and it was a blessing, not only can I walk straight but I also travel by myself also.






Posts: 1846
Joined: Aug 2010

Jim's hands have weakness.  He frequently drops things.  

Cisplatin x3.

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