CancerCompass message board discussion started by BUTTERFLYDANCER on 4/8/2008 http://www.cancercompass.com/message-board/message/all,22801,0.htm Thu, 04 Dec 2008 00:00:00 GMT Thu, 04 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Hi new to this site. wished I had found it at beg of treatment, so much good advice from people who has actually been through it. Im from Britain so terms maybe different. Had squamous cell salivary gland cancer tracking around carotid artrey and back of voice box. (God that sounds good to write that HAD!!) 35 radaitions and 2x5 day cistplasm/5FU and 3 seperate 1 day chemos. no operation. Cancer gone but left with lots of problems, though im very thankful to be still here.voice still weak and terrible dry mouthsleep pattern 1 maybe 2 hours at a time.Epiglottis: Has anyone experiened problems with their epiglottis. Seemingly mine is not working as it should and Ive been told that it will not be safe for me to eat or drink due to aspiration. I cant eat but Im still continuing to drink. I dont cough but they are worried about silent aspiration and want me to stop drinking as well!!!!! I suffer from very dry mouth no salivary glands working. Granulaion: Also, I have a RIG gastronomy tube fitted, which allows for movement. This has caused terrible granulation and pain on movement. I find if I move at all it grows and grows!! They want to change the type of tube and resite. but what I want to know will it cause the same problems. Mine is in my stomach at moment. I am small in height.  Also has anyone with a tube returned to work which is quite strenuous and how do you cope?weak left arm: I have also been left with a weak left arm its like a frozen shoulder. the consultant says its radiatin damage to the accessory nerve. Anyone with experiences of that and cure?? stiff neck: cant raise head back or rotate fully side to side. driving is hard at times.Many thanks in advance to anyone who can help. xx BUTTERFLYDANCER Tue, 08 Apr 2008 00:00:00 GMT Hello friend,I had epiglotis difficulty towards the end of my chemo/radiation.   Had 7 weeks 35 rounds of radiatiion.  3 weeks after completion was sent to a speech therapist.  She ordered a barium swallow to drink different consistencies of liquid and watch it on x-ray. I too was finding difficulty swallowing and could go down wrong pipe to the lung.  I received speech therapy excersizes to strengthen epiglotis, voice glands as well.  I went for 4-6 weeks, it did help and do excersizes on occasion.  I am suppose to cough a little after each swallow, and I also lean forward a bit when swallowing.My voice is very hoarse and I am extremely dry mouth, so this does not help.I was also on a PEG tube for 4 months.  I went back to work 3-4 weeks after treatment stopped.  I had oozing by the PEG site, I just kept it clean with peroxide and kept gauze around it.  I tried to keep it secure in place so as not to feel it.  It was painful for me to have it in the stomach, and glad when they got it out. My left side of throat, shoulder sometimes get stiff, but also have excersizes to do for that as well.  Sometimes it gets stiff, but I work it.  I am going to see a pain specialist this week.  I am 18 months out of treatment and still have side effects .  But this site is GREAT!  I too wish I had been on it during my treatment and side effects as I would sometimes want to give up, but now knowing others were going through the same thing, makes feel better.  Quality of life has changed, but I will do the best I can with what I have.Good luck to you and God BlessPatricia  pcn17 Tue, 08 Apr 2008 00:00:00 GMT I had problems with "silent" aspiration, which unfortunately have not resolved. I have elected not to undergo any more speech therapy or treatment as my esophagus keeps closing and I am tired of doctors' offices and hospitals, quite frankly. But now that this problem exists, you need to insist on getting some speech therapy. They will work with you to rebuild your swallowing muscles and show you different adaptations.With regards to the PEG tube, if this is going to be a long-term thing, I would suggest asking the doctor about a low-profile button tube. It has no tube extending, just a "port" that you hook the tube up to. It has literally changed my life. Of course, I had to drive three hours to find someone to install it, but it was well worth it. I had a lot of tenderness and granulation tissue and sometimes excrutiating pain if something hit that area. Now that is virtually gone. It is still sensitive but much better. I just use Neosporin with pain reliever around the site and put a square of rolled-up tissue around there. As long as you keep it dry and protected, that will help with the pain. Also, if you get a "button" tube, you will alleviate the pain that the tugging of that long tube extended from your body creates. If you have a strenous job, I would highly recommend it. I will be glad to provide you with more info if you need it. Gagirl Thu, 10 Apr 2008 00:00:00 GMT Thank you both!! Well since writing, i have had my tube changed, That was awful due to overgranulation and infection. Got a temporary one in just now and a button type will go in once they measure every thing. So glad to hear that there will be an improvement. Yes the tube dangling doesnt help!! Its like a swinging cats tail!! LOL Since temp tube gone in granulation disappearing along with pain. Thank God. My daughter says im looking much brighter. I was desperate when i wrote and my husband and I were so pleased when you replied. Its just such a relief when you know someone else has or is going through it. you dont feel so isolated.Had my 1st year scans and all is well. Also had scope down nose and voice box clear and it looks like epiglottis is working but weak. so Ive got the go ahead for barium swallow and speech therapy, which starts at end of month with a view to starting eating again. Took my first walk in 6 weeks with the dog, its great to be alive!!! Wasn't feeling like that last week im ashamed to say.Thank you again for advice and God bless you both. Laurie x  BUTTERFLYDANCER Wed, 16 Apr 2008 00:00:00 GMT