#37158 04-08-2004 12:30 PM | Joined: Sep 2003 Posts: 30 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Sep 2003 Posts: 30 | I am taking part in a study of a drug called Pentoxifylline and Vitamin E in the treatment of late radiation injuries. I would like to get peoples opinion on it.
My history is that I had a right radical neck disection in Dec 2002, radiation to right side only in Mar/Apr 2003, then a recurrance on my tongue in Aug 2003 in which about 15% of tongue removed. Everything was going okay until Dec 29 when I woke up, the entire right side of my face was swollen. I have had this swollen face for 3 months now, some days are worse than others, at times I can hardly open my right eye.
The study is being done because researches believe that radiation related injuries might be caused by damage to the tiny blood vessels that deliver blood to different parts of the body. The lack of blood then leads to damage to your skin, the tissue below the skin or to other parts of your body. If you feel pain, or it you can feel or see a hardened area on your body, it is this damage that you feel or see. This drug improves the flow of blood through blood vessels, in the past it has been used to reduce pain caused by poor circulation. I am trying this drug to see if it removes/improves the swelling on my face.
Right Radical Neck Disection 2/02, 7 wks Rad. rgt side 04/03, 15% of tongue removed 08/03, Lung Met 05/04, lung surgery removed 8 nodules and 4 lymph nodes in chest all SCC
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#37159 04-08-2004 04:30 PM | Joined: Sep 2003 Posts: 30 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Sep 2003 Posts: 30 | Hi Dee, Thank you for your honest reponse. I don't want to walk around with a swollen face and the doctor's can't even guarantee that this will even work. I'm not sure what to do?? I will keep in mind everything you have mentioned. Thank you very much again! Sharon
Right Radical Neck Disection 2/02, 7 wks Rad. rgt side 04/03, 15% of tongue removed 08/03, Lung Met 05/04, lung surgery removed 8 nodules and 4 lymph nodes in chest all SCC
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#37160 04-09-2004 04:01 AM | Joined: Jul 2003 Posts: 382 Likes: 3 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Jul 2003 Posts: 382 Likes: 3 | Sharon- I finished my radiation treatments 6/02 after left neck disection and used Trental and Vitamin E for 1 1/2 years. Have not had a reacurrance of cancer and have not had swelling for 1 year. Learned a year ago in PT how to do lymph message on face and neck which helped redirect the fluids to drain to the right side of my neck. Although the neck is still stiff and numb it is not as hard as it was after radiation and I have much more mobility. Doctor at the time did not mention that Trental might increase the risk of a reacurrence of the cancer. Just said take it and I did. You might try to find a physical therapist and try the message first. Always better than pills! - Kris
SCC Stage IV left tonsil neck disection 3/02 radiation finished 6/02 chemo finished 9/02 Stage 2A left breast cancer 3/09, chemo and radiation, finished treatment 2/7/10 -Stage 2 right beast cancer 10/14 chemo and radiation Every day is still a gift :-)
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#37161 04-09-2004 01:20 PM | Joined: Mar 2003 Posts: 1,384 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Mar 2003 Posts: 1,384 Likes: 1 | Hi Sharon,
It has been a while since we talked about this here but I slept on a 6 inch incline under my pillow to help with swelling. I didn't have bad swelling but it helped just the same. I was able to get level after about a year.
Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
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#37162 04-10-2004 09:05 AM | Joined: Sep 2003 Posts: 30 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Sep 2003 Posts: 30 | Kris, Thanks for your response, I did try a facial massage and it did help. As you said, the doctors did suggest me taking Trental without telling me about it potentially causing a reaccurance. I am glad to hear that you were on it for 1 1/2 years with no trouble. I pray that it will work for me.
Hi Mark, I do use extra pillows when lying on my right side because of my shoulder (it causes alot of pain at night!) It doesn't seem to help my face at all. I did not have any swelling at all for 1 full year after my neck disection, then I woke up one morning and had a swollen face and it has been swollen ever since. It's been 3 months now and finally my doctors have decided to try something to help it. Sharon
Right Radical Neck Disection 2/02, 7 wks Rad. rgt side 04/03, 15% of tongue removed 08/03, Lung Met 05/04, lung surgery removed 8 nodules and 4 lymph nodes in chest all SCC
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#37163 04-11-2004 01:52 AM | Joined: Mar 2003 Posts: 1,384 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Mar 2003 Posts: 1,384 Likes: 1 | To be clear, I don't think that people are suggesting that Trental will cause or is known to caues a recurrence, simply that they have the OPINION that it will increase the blood flow to any cancer that might already be present.
Sharon, keep posting what the doctors do for you and works for your swelling. It is a common side effect and your experience may help others.
Thanks
Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
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#37164 04-11-2004 02:25 AM | Joined: Apr 2004 Posts: 143 Gold Member (100+ posts) | Gold Member (100+ posts) Joined: Apr 2004 Posts: 143 | Right you are Mark, as I said, this was my personal opinion,that seemed like common sense, i tried to dicuss it with one our docs, who told me trental didn`t work, so that was the end of that discussion. Frank`s neck showed major improvment, but since the cancer was still present, i don`t think it good in our case. As I said before, I`m very hesitant to recommend, anything than to get the best possible docs and treatment center you can find. Find docs you can trust and willingly share imformation with you. I was fortunate to get my nurse`s training at a major teaching hospital, right along with medical students, I was taught to have a healthy disrespect for docs, and to question anything I wasn`t comfortable with as a nurse...Frank had a doc, who I actually told him to 4 letter word himself, fortunately, he knew me well enough by then that he did accept my apology, and to this day, I still have his home email address. I try to stay away from advocating any medical treatments and only try to share our personal experiences......Dee | | |
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