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throat cancer

September 16, 2008 - 18:49

I was diagnosed with cancer of the oropharanx in August 2005 and finished my treatment in December of that year. I am now cancer free. However in the process I lost the use of my swallow muscles and am totally dependant on peg feeds for my nutrition. I would like to get in touch with other people that are in the same position as myself or those who may just have difficulty swallowing.
While researching on the internet I found a treatment called Vital-stim which according to the site has very good outcomes for those whode muscles aren't working due to having had throat cancer. If anyone out there has information on this treatment could they please get in touch. I would also be interested in getting in touch with others that are in the same position as me.

October 19, 2008 - 22:34

hi noreen my name is moira my husband has just been told he has throte cancer he started his treatment last week in st lukes we live in r o i and would be glad of any info you could give us esp; on what we might expect to happen with the rad; trement and what we can do to help with the side efects sorry we cant help you hope you are doing all right this is a scarie time for us all and would be glad of a frind right now ecp; one who knows what its like thanks for being there for peopel like us take care moira

October 20, 2008 - 14:28

Hi Moira,
I'm sorry to hear about your husband. Do you know yet what treatment he will be having. It is a hard road but do-able the main thing for both of you is to stay positive. I also had my treatment in St. Lukes, its a great hospital. The radiation treatment is hard. You have to get a mask which is moulded to fit your face and this is used to hold you steady on the table. Its frightening at first but you get used to it. the side effects of treatment are sore dry mouth, difficulty swallowing and fatigue. I don't know how bad your husband is but I had lost the ability to swallow before my treatment so this is why I still have trouble, but my cancer was very big when they found it. I sometimes attend the support group in the hospital so maybe we'll meet at some stage in the meantime if you have any questions as things progress you can ask me on here. One more thing, I got an aloe vera plant in the beginning of treatment and used this on my neck as the radiation burns. Hope this helps. Keep in touch and I'll keep you both in my prayers,
Noreen

October 20, 2008 - 21:48

hi noreen thanks for mailing us his cancer was caught very early so that is a bonus he has his mask does not like that very tight we are makeing the mothwash every day jusing lots of fruit taking fish oil caps now i will get a v plant for him he has just been using e45 on his neck.We have not been told about any support groops yet thanks again for your help will talk again if thats ok with you all the best moira .

noreen_d wrote:
Hi Moira,
I'm sorry to hear about your husband. Do you know yet what treatment he will be having. It is a hard road but do-able the main thing for both of you is to stay positive. I also had my treatment in St. Lukes, its a great hospital. The radiation treatment is hard. You have to get a mask which is moulded to fit your face and this is used to hold you steady on the table. Its frightening at first but you get used to it. the side effects of treatment are sore dry mouth, difficulty swallowing and fatigue. I don't know how bad your husband is but I had lost the ability to swallow before my treatment so this is why I still have trouble, but my cancer was very big when they found it. I sometimes attend the support group in the hospital so maybe we'll meet at some stage in the meantime if you have any questions as things progress you can ask me on here. One more thing, I got an aloe vera plant in the beginning of treatment and used this on my neck as the radiation burns. Hope this helps. Keep in touch and I'll keep you both in my prayers,
Noreen

March 2, 2009 - 20:30

Hi Noreen, my mother has had her swallow muscles removed and would love to hear from someone like yourself. Is there any way I can e-mail you details?

March 5, 2009 - 14:45

Hi Dave,

I don't know anything about Throat cancer and PEG feeding but I just wanted to wish your Mam well. You might want to try posting the same question on the UK's Macmillan site, it is more active than here. It also gets a good few Irish posters so you might make contact with someone local there too.

Please keep coming here too. Its only by us all continuing to post that this site will grow and improve.

Good luck,

Flo.

http://www.macmillan.org.uk/Share

And here's a specific PEG feeding question on Macmillan....
http://share.macmillan.org.uk/Share/Forums/?topic=1008830&page=0&goto#8

March 5, 2009 - 14:54

Thanks FH2, I'll check that site out. Yeah, I would have imagined that there would have been more posters here too.

April 14, 2009 - 22:32

I too have throat cancer (head and neck) .I had my left tonsil removed and 9 lymph nodes that were affected 2 weeks ago and am starting radio & chemo in three weeks and am terrified. there is very little information in Ireland as compared to the UK. my e mail is

if anyone can give me any advice or wants to talk. id be interested in a support group for this type of cancer if anyone knows of one as I only have my doctor to talk to whou would understand at the moment
Thanks and good wishes to all.

May 1, 2009 - 15:20

Hi,
Sorry to hear you have throat cancer. I had a tumor on my left tonsil, most of it removed during biopsy and then had 35 radiotherapy sessions. I had my last treatment on the 29th July 2008. Its been a tough journey but with support and following advice you will get through it. Today I can eat most things, with a glass of milk and some patience. I do suffer from a dry mouth and throat. I always carry a bottle of water, mouth spray and now boiled sweets. Fatigue is still a problem and I have pains in the treatment area but with medication its manageable most of the time.

I was treated in St Luke's and the staff there were brilliant. We have a support group there for head and neck cancers. We meet every three months but we don't think that is enough and are trying to expand on this.

Take care and good luck with the treatment.

PS: Suggest you get Aloe Vera plant or 100% gel/oil to put on skin during radiotherapy to protect and heal the skin.

regards

Ken

May 2, 2009 - 00:06

I bought the aloe vera gel today and have it ready. I start my treatment on 5th May in St Vincents. I also got aloe juice to gargle as I heard it is good. Im hoping to be able to eat somehow. Have all patients with this kind of treatment had to have a feeding tube or does it vary. Also I would be interested in the support group. There is none in St Vincents. When and where exactly is the next meeting. Its good to see a few posting here. Lets keep it up and get this thread livened up. As the guy says "Its good to talk" (or type) and Im sure there are more than the few here who are as confused and scared as I am and could do with the communication of people in the same boat.
Thanks.

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