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#36920 09-11-2003 06:48 PM | Joined: Aug 2003 Posts: 4 Member | OP Member Joined: Aug 2003 Posts: 4 | Hi, Does anyone had experience with "electron beam" radiology (x-ray, lower dose?) or brachytherapy? My mother has been given these as options from 2 different radiologists to treat her gum cancer recurrence that's microscopic (vs. tumor) at this point.
She's just completed her second major surgery (removed tumor from back of her throat area) after having radiation and surgery 5 months ago. This time they also found microscopic cancerous cells on her lip/front gum area (in area that was radiated last time along with lymph nodes and other parts of her mouth). Most doctors telling us chemo isn't an effective option for oral cancer and they don't believe she'll be accepted into clinical trials (until after doing standard protocol) or just don't believe clinical trials are effective (or gene therapy would be too toxic for her).
So now they're basically debating how much radiation to give my mom (she lost 40 lbs last time, got infections and very nauseous). Radiation didn't cure it last time, but understand there are different types of radiation. I don't believe in half measures but not sure she can handle something too intensive. Have heard brachytherapy can leave awful ulcers, may tighten mouth so cleaning very difficult and very potent stuff - quality of life severely impacted and might make her even sicker. And, to top it, no one agrees on how quickly we need to act on this - allow her to get stronger after surgery (build up immune system and weight) or do more radiation asap.
Would greatly appreciate hearing your experiences or thoughts. It's very confusing - the differing opinions, the jargon, the definite "art" of treatment et al with limited time with doctors! My mom tells the doctors that she's not expecting a miracle, she just wants to extend her life a little longer. However, our family is praying for a miracle and I keep telling my mom about all of you!
Laura | | |
#36921 09-12-2003 06:28 AM | Joined: Mar 2002 Posts: 4,918 Likes: 67 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,918 Likes: 67 | Radiation is accumulative in your lifetime. As a patient hearing that they are considering bracytherapy etc. which is low dose and very localized, leads me to believe that her levels of exposure are getting maxed out. Considering the wide range of areas in which she has this, this very localized treatments are likely not going to be extremely effective since the radioactive bracytherapy seed/bead is only designed to reach a local spot. You are right though that chemo for localized oral cancers has not been greatly effective. I think that you have misunderstood something about gene therapies, which are mostly clinical trials right now. They are not toxic and that is why they are racing in this direction with so many different clinical trials on different gene therapies. As cancer itself is a series of genetic mutations, in the long run, these therapies show the greatest promise.
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant. | | |
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