sr
Member
Member # 2393

posted September 20, 2005 01:28 PM
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Hi my mum is 41 and recently had a gruelling 14 hour operation to remove a tumour at the base of her tongue. More importantly she had a trachea fitted that caused no end of grief. Mum has had a peg fitted since the beginning of her operation. She has been home for a week and a half. Although she can swallow and eat soup! she may never eat solid food again. We are now about to embark on radiotherapy which is causing nightmares for us all. After a consultation today they said she will not be able to swallow for 12 weeks is this true !. What are the cruel harsh side effects of radiotherapy. Any one who has been through it would love some advice
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Posts: 2 | From: London | Registered: Sep 2005 | IP: Logged

dee
Member
Member # 2212

posted September 20, 2005 11:08 PM
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sr,

I can only tell you the harsh side effects through what I'm seeing with my Mom (67).

Due to her advanced stage of her cancer *first called tongue cancer then oral cancer now head and neck cancer.. not quite figured out if these all mean the same thing or every test just took it a new level" Surgery is not an option...at least not at this time.

However, going in to the radiation was very difficult for Mom due to the mask she has to wear due to enclosed phobias. The mask is pretty tight fitting. She has a great deal of pain from a device they place in her mouth also during rad. mainly due to the tumor on the tongue. She takes ativan 1/2 hour prior to tx to help relax her.

The cruel harsh side effects you asked about is (in Moms case) developing one of the most severe sunburns you could imagine that leaves the treated area completly raw and itches alot. Some bleeding may happen if it is scrathched in the sleep. Please be sure to be extremly proactive and insist on the gels/creams BEFORE the skin gets bad. Then there is the extreme worn out phase. And lets not forget to mention the odor the mouth develops from nothing being tolerated in the mouth but there ARE many oral rinses available.

PLEASE keep in mind that She is also going through chemo and the combination of both is just down right taking its toll. I have read MANY posts that have more positive info and hope you continue to read /search for other input.

To those of you that have reponded to my plee for help..THANK YOU.

Steve, I had inquired about procrit 2 weeks ago when they gave Mom blood infusion, the chemo doc. said he didn't feel that procrit would be a benifit!? What are they really tring to tell me? Her counts did come up some after the blood but not enough to do the cisplantin, only the Erbitux.

We tried the less medication route..pain became intolerable.

We had a cbc on Mon. They saw how weak she was and still did rad tx & suggested more hydration. She missed both rad and chemo tx today due to just not being able to get out of bed. Fluid has been ordered after rad tomorrow. Said test they did in neck was inconclusive due to pain she was in and couldn't get a good reading. URGH

I'm REALLY trying to stay positive. They (docs) told us this was going to be an extreme hard road and they WERE NOT KIDDING!!


Dee

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Caretaker of Mom with Unresectable stage IV SCCHN, T1-3,T4..No,N1,N2-3. IMRT daily treatment starting 8/24/05. Erbitux every week starting 8/10/05 and Cisplantin every 3 weeks times 3.

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Posts: 19 | From: In. | Registered: Jul 2005 | IP: Logged


Moved here so that it is easier to find.

Dear Sr
I just wanted to say Hi and welcome , your mum is going to be pretty sick for a while but, to say she will never eat solid foods again might be jumping the gun a little. The radiotherapy can be rough but everyone reacts differently. As she progresses in her treatment let us know what kind of side effects she is experiencing and we will do our best to help you make her comfortable.
You need to ask her Doctor what they expect her side effects to be. I know its different in the UK , I am Scottish , but make the Doc take the time to give you whatever info you need.
Keep in touch
Best wishes to you and your family.
Marica

Hi sr,
it is indeed hard on you to see what your mum is going through and Ican well relate to it as I have not eaten solids in well over four an half years. I was diagnosed with cancer of the larynx in April 2000 - refused surgery and opted just for radiation and chemo. Unfortunately I received an overdose of radiation leading to a fistula between my wind and food pipe. Though I have my voice and have been declared cancer free - the peg feed has very much become a part of my life and no longer crave for anything of the past. I just learnt to accept my fate and fight as hard as I could.

I honestly pray that your mother will be able to eat normally again an it is quite usual that after radiation it becomes a nightmare to take in solids. I recall using large amounts of xylocaine spray to numb my mouth before eatin anything solid. You could ask the treating doctor if that is advisable for her.

Please do not hestitate to contact me if you feel I could be of some help.

Tak care,
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Ananth - 47 years - diagnosed with cancer of the larynx in April 2000 in its final stage - 4. Refused surgery and managed to mantain/retain my voice. Though still have side effects- was declared totally cancer free in January 2004.