Where we live and Where we were treated
there have been many questions from new members and others about Drs and treatment centers. Perhaps it would be helpful to list where we . liveand where we were treated.
Tanda
Philadelphia, PA...treated by GI cancer team at the University of Pennsylvania...MitomycinC (only 1 initial treatment), Xeloda and Proton Radiation.
Comments
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tanda
I was not treated at a major cancer center. I do, however, live in the greater metro Atlanta area, where there are some very good healthcare facilities and doctors. I received treatment in my hometown and my medical oncologist's group was Atlanta Cancer Care. I received my chemo in the infusion suite in their office. My radiation oncologist is with Radiotherapy Clinics of Georgia. I had 2 rounds of Mitomycin and 5FU in weeks one and five, concurrent with 30 radiation treatments over a 6-week period. My tumor was on the fence between Stage 1 and Stage 2. That all took place in 2008 and I'm still here.
Martha
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treatment....
Hi,
I live in Central Wisconsin and was initially treated for Stage 3b anal cancer with Cisplatin / 5Fu as well as colostomy surgery through Marshfield Clinic Cancer Care in 2011. In 2012 I was treated for a rare breast cancer, and last spring in 2015, I was diagnosed with mets of the anal cancer to my lung. My treatment included a thoracotomy (removal of lung lobe) followed by Cisplatin / 5Fu every 3 weeks x 4.
Today I am doing great, tomorrow is unknown!
Katheryn
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I liveI in Ohio and was
I liveI in Ohio and was treated at the Cleveland Clinic. I was diagnosed with stage 4, mets to the lymph nodes, liver. I had standard radiation and chemo of 5Fu and mitomycin. I also had liver resection surgery to cut out part of liver where cancer was. I was diagnosed in 2011 and I am doing great! More active now then I ever was
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where?
I live in a smallish county in California and had an HMO plan which limited choices of doctors, not that I cared or even thought of it at the time. My group of doctors has med. oncologists but no radiation oncologists. This county has one practice with two doctors and I referred to them for that part of treatment. I'm very glad I didn't travel for any of my treatment and only travelled once for a consult with a gyno-oncologist. So, all local doctors and local hospitals for surgeries, scans and a transfusion. I was happy with my care and continue to be happy with the follow-up. I was diagnosed in July 2012, possibly stage 3A, 3B, or 4. Complications made exact staging impossible. No matter now.
Janet
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md anderson
i live in a small town in north louisiana... proctologist here mis diagnosed me for over a year so i was NOT going to stay here for tx..(later correctly diagnosed in Shreveport , louisiana by colorectal surgeon)......drove 7 hours to houston to go to MD Anderson who had seen anal cancers.....i had 2 rounds of mitomycin with 5 fu on week 1 and 5 concurrent with 28 rounds of radiation.....that was 2009... i was stage 2 no nodes no mets..... sephie
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I was treated in the westérn
I was treated in the westérn part of Massachusettes. My oncologist said the nice thing about anal cancer is the guidelines are the same all over and he followed them. Mitomycin and 5 fu for the first and last week and 30 rounds of radiation. He did give all the mytomicin up front...said I would not feel up to it at the end...he was correct.
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Lake City, Gainesville or Jacksonville
I have yet to be staged or treated. Anal Cancer determined through biopsy during colonoscopy. Further steps delayed due to insurance issues. I am in Lake City, FL with my sister and was pretty set on going to MD Anderson in Jacksonville and getting a place to stay there during treatment, probably "Third and Main" which is for Cancer patients. But now I'm wondering if I should go somewhere that offers Proton Therapy and I'm not sure yet if MD Anderson does. I know University of Florida Health Proton Therapy Institute has it but not sure if they specifically offer it for Anal Cancer treatment. I have seen though that Proton Therapy has been used in the treament of anal cancer in some facilities in the country.
If Proton Therapy is not an option and the normal protocol/treatment is the same everywhere, I'm wondering if it's necessary that I go all the way to Jacksonville and go to the additional expense of paying for my own place to receive daily treatment. My latest idea is to get staged and have a treatment plan figured out in Jacksonville, followed by treatments in Lake City or Gainesville, closer to my sister. As you may be able to tell, I have a very hard time making up my mind. Not to mention that these kind of decisions are challenging anyway.
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Treatment
I went to city of hope in California for a second opinion. It is there that they layed out the treatment plan. It was the same protocol that my provider was offering. However when I did go for treatment they tried to omit that last infusion of Mitomycin. I told the oncologist that city of hope said I must get everything that was lsited out in the plan. They begrudgingly gave me that last dose of Mitomycin. my provider also verified that they had the same radiation machines that city of hope has. The most important thing is to be comfortable with the facility providing the treatment.
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TreatmentPhoebesnow said:Treatment
I went to city of hope in California for a second opinion. It is there that they layed out the treatment plan. It was the same protocol that my provider was offering. However when I did go for treatment they tried to omit that last infusion of Mitomycin. I told the oncologist that city of hope said I must get everything that was lsited out in the plan. They begrudgingly gave me that last dose of Mitomycin. my provider also verified that they had the same radiation machines that city of hope has. The most important thing is to be comfortable with the facility providing the treatment.
I did not have the 2nd Mitomycin infusion. I had the pill form of 5FU (Xeloda/capecetebine)
The NCCN Guidelines list 3 protocols...I Think that the one that I had was a Canadian one...I had the first mitomycin infusion, but at a slighter higher dose than the Nigro traditional protocal.
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Lake City, Gainesville or JacksonvilleMary Gelewski said:Lake City, Gainesville or Jacksonville
I have yet to be staged or treated. Anal Cancer determined through biopsy during colonoscopy. Further steps delayed due to insurance issues. I am in Lake City, FL with my sister and was pretty set on going to MD Anderson in Jacksonville and getting a place to stay there during treatment, probably "Third and Main" which is for Cancer patients. But now I'm wondering if I should go somewhere that offers Proton Therapy and I'm not sure yet if MD Anderson does. I know University of Florida Health Proton Therapy Institute has it but not sure if they specifically offer it for Anal Cancer treatment. I have seen though that Proton Therapy has been used in the treament of anal cancer in some facilities in the country.
If Proton Therapy is not an option and the normal protocol/treatment is the same everywhere, I'm wondering if it's necessary that I go all the way to Jacksonville and go to the additional expense of paying for my own place to receive daily treatment. My latest idea is to get staged and have a treatment plan figured out in Jacksonville, followed by treatments in Lake City or Gainesville, closer to my sister. As you may be able to tell, I have a very hard time making up my mind. Not to mention that these kind of decisions are challenging anyway.
I think you are doing very well in gathering information. I have a terrible time making decisions, and at, least there were not several chemo cocktails to chose from...like breast and other cancers. However there needs to be some new thinking about treatments for us, like there is for some other cancers.
I was treated in 2015. At that time, the only centers offering proton therapy for a.c were the University of Pennsylvania in Philadelphia and Mass General in Boston. I think Scripps may also have been using protons. Mass General and Penn were doing a PILOT study to determine if using protons for a.c was feasible. MD Anderson in Houston was not using protons for a,c
The theory is that the pencil beam was more precise than IMRT and would cause less damage to healthy tissue in surrounding areas (bladder, bowel,pelvic bones,etc) I don't think there is any outcome data as yet....too few patients and too few proton centers!
I was treated with Protons at Penn (not on the trial) . I don't know whether it was risky because it was still a bit experimental(.treatment planning for protons is complex and there is a learning curve) My thinking was that pelvic radiation has some very long term effects and i wanted a chance to reduce that risk.
I was fortunate in that I live in Philadelphia and it was very easy to get to daily treatments..and I knew that the Radiation Oncology Department was supposed to be excellent.
I had the same side effects (frequency and urgency, no appetite, malaise, pain in treated area) I didn't have terrible mouth sores ...some hair thinning and general misery. The Xeloda caused hand and foot syndrome in the last 2 weeks. Not everyone experiences the same side effects in the same degree.
I wish you well. It seems all of the places that you are considering are excellent. If you e-mail me I will send you the cell phone number of the woman on the other site who lives in Fla .
Tanda
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proton vs imrttanda said:Lake City, Gainesville or Jacksonville
I think you are doing very well in gathering information. I have a terrible time making decisions, and at, least there were not several chemo cocktails to chose from...like breast and other cancers. However there needs to be some new thinking about treatments for us, like there is for some other cancers.
I was treated in 2015. At that time, the only centers offering proton therapy for a.c were the University of Pennsylvania in Philadelphia and Mass General in Boston. I think Scripps may also have been using protons. Mass General and Penn were doing a PILOT study to determine if using protons for a.c was feasible. MD Anderson in Houston was not using protons for a,c
The theory is that the pencil beam was more precise than IMRT and would cause less damage to healthy tissue in surrounding areas (bladder, bowel,pelvic bones,etc) I don't think there is any outcome data as yet....too few patients and too few proton centers!
I was treated with Protons at Penn (not on the trial) . I don't know whether it was risky because it was still a bit experimental(.treatment planning for protons is complex and there is a learning curve) My thinking was that pelvic radiation has some very long term effects and i wanted a chance to reduce that risk.
I was fortunate in that I live in Philadelphia and it was very easy to get to daily treatments..and I knew that the Radiation Oncology Department was supposed to be excellent.
I had the same side effects (frequency and urgency, no appetite, malaise, pain in treated area) I didn't have terrible mouth sores ...some hair thinning and general misery. The Xeloda caused hand and foot syndrome in the last 2 weeks. Not everyone experiences the same side effects in the same degree.
I wish you well. It seems all of the places that you are considering are excellent. If you e-mail me I will send you the cell phone number of the woman on the other site who lives in Fla .
Tanda
hey... i do not know enough about proton beam therapy but will it hit all the lymph nodes that are needed to be radiated ???? imrt does go all the way around and hits inquinal nodes as well as others......just a thought to consider.....thx...sephie
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SoCal
I was diagnosed by a colonoscopy in the Long Beach CA area almost 4 years ago. My gastroenterologist introduced me to my amazing chemo oncologist at Long Beach Memorial. He has since helped facilitate the healing of 2 of my dear friends ( colon stage IV, and lung stage III). He introduced me to my awesome radiation oncologist - also at Long Beach Memorial. She had actually treated cases of anal cancer, in her internship in San Francisco, so she was quite knowledgeable.
I had 2 rounds of 5FU and Mitomycin and 25 radiation treatments.The only side effect I had, besides the extreme rawness of the area, was occasional extreme fatigue. This past week I experienced that extreme fatigue 2 days in a row. This only happened in treatment up until now, even with working many hours for the last 2 years. I'm scheduled for my 4th colonoscopy in my life in July (I'm only 51). I had some thickening of my rectal wall in my catscan last Nov. He thinks it's from scar tissue, but he's going to take a look anyway.
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