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#14053 04-11-2003 10:48 AM
Joined: Apr 2003
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BonnieM Offline OP
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Hi Everyone:

I just found this website and I need some help! My mother was diagnosed with squamous cell carcinoma on her tongue in November. She had surgery to remove the tumor and at the same time they found a few cancerous lympnodes on her neck. She went through over 6 weeks of radiation on her tongue and neck along with some chemo (Taxol - I believe) in December and Jan. In March they did a neck dissection and removed more cancerous lymphnodes. And just about a week ago they found that her cancer has spread to her spine. We have been going to UCLA for treatment and now they want to do more radiation on her back - but only to help minimize her pain. We want to know if anyone know of any promising clinical trials going on - or should we be looking at different head and neck cancer centers? Any suggestions would be most appreciated - My mom has already said that she is going to beat this cancer and I would like to be able to help her do it.
Thanks
Bonnie

#14054 04-12-2003 06:51 AM
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I'm sorry to hear of this unfortunate turn of events in her progress. Spreading to her spine is, as you are aware, a dangerous evolution of this disease. You do not mention if it has attacked the bones of the spine or if this is related to it infiltration into the soft tissues surrounding the spine and the nervous system. Each scenario has different treatment possibilities. Clinical trials are best found through the staff at UCLA where a dedicated person has access to a data bank of all that are going on in the US right now. Remember that each clinical trial is only being conducted a certain facilities, and if you find one that she qualifies for, (sometimes very difficult) UCLA may not be one of the facilities which are involved in that particular clinical trial. There is also a link on our resources page to two tracking databases for clinical trials which you will find useful if you wish to search on your own.

UCLA is a well respected institution, and certainly has a qualified staff. If you do make the decision to involve another cancer facility such as MD Anderson or Memorial Sloan Kettering, time is of the essence right now. This disease moves very fast once it leaves the immediate area of the primary cancer. If you need contact information for either of these institutions there are links to them on our resources page, or you may email me directly and I will give you individual


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.
#14055 04-17-2003 02:44 AM
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Hi my name is bob and I also had tongue cancer since 98 and can sympathsize with your story. . My story is similar to yours although i havent had radiation yet. I am seeing a doctor in NYC, and is one of the best doctors I have seen and ,believe me I have seen a few. His bedside manner is wonderful and is world renown for his specialty in this area. I truly recommend him if you want to explore other options in this fight for survival. Otherwise I can share my experience with you if you want.
Take care and god bless


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