Any new drugs for anal cancer besides 5FU and Mitomycin?

u574713
u574713 Member Posts: 6

I was treated with  radiation and 5FU and Mitomycin in 2013. Didn't work. I just had the big surgery (APR) removal of rectum and anus with colosomy, on 10-6-14. Unfortunately they found cancer on my pelvis and removed those tumors a well as the original large one. It was a horrible experience, infection, wound care, fevers, blood transfusions and readmitted to hospital 2 times and in nursing home for 6 weeks. I am finally starting to feel better but now the oncologist wants to put me back on the same chemo cocktail that didn't work before. She says it is the standard treatment for anal cancer. Has anyone done a different kind of chemo and if so what is it? Thank you. Judy

Comments

  • mp327
    mp327 Member Posts: 4,440 Member
    u574713

    Go to the website for the National Comprehensive Cancer Network at this address:

    www.NCCN.org

    After you register, you will have access to the very latest guidelines for the treatment of anal cancer, both primary and metastases.  This is the best source of information that we have access to.  I would read it thoroughly and take a copy to your oncologist to discuss.

    Beyond that, check the American Cancer Society's website for clinical trials.  Also, the website for the Anal Cancer Foundation--(   http://www.analcancerfoundation.org/   ) may have information on clinical trials.  Another website to check out is the National Cancer Institute, as they list any current clinical trials as well.

    I'm sorry your treatment wasn't successful, but I hope you can find a clinical trial that can help you.  I wish you all the very best.

    Martha 

  • eihtak
    eihtak Member Posts: 1,473 Member
    u574713.......

    Hi, Martha gave some valuable resources and I would certainly check them out. There has been some progress with clinical trials in the last few years and well worth a check.  Almost 4 yrs ago I was diagnosed with Stage 3b anal cancer. I was initially in a clinical trial that involved the drug "Cetuximab"........... I was also treated with standard protocal treatment and have an ostomy as well. I have my 4 yr follow-up Pet scan next month but have so far been NED (no evidence of disease).

    I wish you only the best in future treatments and will have you in my thoughts and prayers for success.

    katheryn

  • u574713
    u574713 Member Posts: 6
    Thank you

    Thanks for all of the suggestions. I'll be looking into them...................Judy

  • Ouch_Ouch_Ouch
    Ouch_Ouch_Ouch Member Posts: 508 Member
    u574713 said:

    Thank you

    Thanks for all of the suggestions. I'll be looking into them...................Judy

    Greetings.....

    I read on <http://chemocare.com/chemotherapy/drug-info/MitomycinC.aspx#.VKOrcnuPXTA&gt; that, like radiation dosage, we each have a lifetime cap on Mitomycin. You might want to check with your oncologist to see where you are with that. Also, check with the radiation oncologist about your lifetime dosage in that department and how to avoid unnecessary radiation exposure in the future. (The infusion center I went to gave me a printed copy of the Chemocare info on Mitomycin and 5-FU, so I know that's it's a legitimate site. It's a part of the Scott Hamilton CARES Initiative.)

    I am truly sorry that you had to go through so much. I hope the New Year brings you a fresh start.

  • eihtak
    eihtak Member Posts: 1,473 Member
    u574713 said:

    Thank you

    Thanks for all of the suggestions. I'll be looking into them...................Judy

    Judy.....

    Happy New Years Eve......or so I hope! 

    Ouch brought up an interesting point about life-time amounts of certain chemo drugs. As I mentioned earlier my clinical trial included cetuximab but my protocal treatment was 5fu with cisplatin rather than mitomycin. I have not done much research on the difference or reasons why, although I remember that others here were also treated with cisplatin. I seem to remember also hearing that it is an oncologists choice and often varies by the region in which you live??????? I will do a bit more checking and let you know what I find, but cisplatin may be an option for you.

    Wishing you well.......

    katheryn

  • Ouch_Ouch_Ouch
    Ouch_Ouch_Ouch Member Posts: 508 Member
    eihtak said:

    Judy.....

    Happy New Years Eve......or so I hope! 

    Ouch brought up an interesting point about life-time amounts of certain chemo drugs. As I mentioned earlier my clinical trial included cetuximab but my protocal treatment was 5fu with cisplatin rather than mitomycin. I have not done much research on the difference or reasons why, although I remember that others here were also treated with cisplatin. I seem to remember also hearing that it is an oncologists choice and often varies by the region in which you live??????? I will do a bit more checking and let you know what I find, but cisplatin may be an option for you.

    Wishing you well.......

    katheryn

    Cisplatin info.

    Of course, the experience of the oncologist must be heeded, assuming that the doc has experience with anal cancer (it is a rare disease). According to these sources, cisplatin is usually used in more advanced anal cancers:

    National Comprehensive Cancer Network (devises the standard protocols for cancer treatments that are used around the world - need to register first, for free - there are references to cisplatin throughout the "Anal Carcinoma" document) - http://www.nccn.org/professionals/physician_gls/PDF/anal.pd after allf

    American Cancer Society - http://www.cancer.org/cancer/analcancer/detailedguide/anal-cancer-treating-chemotherapy

    National Cancer Institute (definition of "induction therapy" as used in the NCCN report) - http://www.cancer.gov/dictionary?CdrID=45736

    The best of everything in 2015!

  • Terri Sue
    Terri Sue Member Posts: 22
    New chemo for rectal/anal cancer

    My husband has both and he take 1000 mg of Xeloda 2 times a day and once every 3 weeks an infusion of Oxicalin.  It has strunk his tumors.

  • lizdeli
    lizdeli Member Posts: 569 Member
    Terri Sue said:

    New chemo for rectal/anal cancer

    My husband has both and he take 1000 mg of Xeloda 2 times a day and once every 3 weeks an infusion of Oxicalin.  It has strunk his tumors.

    Cisplatin

    I was treated 5 years ago with Cisplatin and 5FU.  I had the 5FU 24/7 via fanny pack for 7 weeks (off on weekends).  Cisplatin every week for 7 weeks and radiation every day M-F for 7 weeks. I was stage 111b with node involvement.  I was treated at MD Anderson. As I recall, my oncologist explained the reason I was getting Cisplatin vs. Mito was because she felt it was less toxic on the kidneys.  Although the treatment was no walk in the park, I did get through it with no infections or hospitalization.  I do recall being told that I was being maxed out on the radiation and if the beast returned I would not be able to receive any further radiation.  It's been 5 years and so far all is well.  Radiation after effects, but all something I've learned to live with.

    Liz

  • 0626june
    0626june Member Posts: 73
    HI

    There is a test that can be done, a few Drs in LA do it..it's a blood test that will tell you if a certain chemo cocktail will work for you.  Very common in Europe.  I read about it in Suzanne Sommer's book, Breakthrough.  Worth some research and inquiring?  Wishing you all the best and hopefully you're through the worst of it.

    June

     

  • middleduck
    middleduck Member Posts: 3
    Better?

    Well I know if my cancer is not gone or has spread. The Doctors want to put me on FolFox chemo and always a possible more surgery including colosomy bag. I have read online the chemo treatment and does not look fun. So I hope that won't be the case.

    What stage are you looking at?  I had the same treatment with two bags one in begining of month and at the end, which I think they added more Mitomycin for a boost at the end. This was part of treatment  along with 33 days of radiation. My stage was 2.

    I sure hope your treatment will do the trick., Sounds like your condition was worst than mine but then I not completly out in the clear.  I still have to wait until March for the PET Scan.  I think they mentioned FOLFOX for a stage 3.

    Im wondering was your surgery completly healed before the chemo> as if not is hard to heal with chemo killing the good cells too. I was also given very high dose of Vit D to protect my bones and maybe my well being.

    I hope my experience and info helps. Don't give up, maybe they are trying to keep you together with lighter chemo and maybe you are healed better for the same medicene to work this time. Might ask them to be sure why.

  • u574713
    u574713 Member Posts: 6
    Update on my cancer

    Thank you to everyone who offered help and suggestions. I just had a Pet-Ct scan. Results are concerning. A very tiny spot on my right lung but the tumor board it was presented to are not too concerned right now so putting a watch on it. However a mass was found to the left near my tailbone so now they are not gong to give me chemo but sending me to a radiation oncologist to see if they can give me more radiation. I will see my colorectal surgeon this week to see what he thinks. The tumor board has ruled out more surgery for now, thank God. My oncologist left the practice so have a new one. He is young but did his fellowship at USC. The good news is I feel great and getting out more so life is good!!! 

  • qv62
    qv62 Member Posts: 434 Member
    u574713 said:

    Update on my cancer

    Thank you to everyone who offered help and suggestions. I just had a Pet-Ct scan. Results are concerning. A very tiny spot on my right lung but the tumor board it was presented to are not too concerned right now so putting a watch on it. However a mass was found to the left near my tailbone so now they are not gong to give me chemo but sending me to a radiation oncologist to see if they can give me more radiation. I will see my colorectal surgeon this week to see what he thinks. The tumor board has ruled out more surgery for now, thank God. My oncologist left the practice so have a new one. He is young but did his fellowship at USC. The good news is I feel great and getting out more so life is good!!! 

    u574713

    Glad to hear you are getting out and feeling well, sorry to hear of your new development. Please keep us posted, sending lots of positive energy your way.

  • mp327
    mp327 Member Posts: 4,440 Member
    u574713 said:

    Update on my cancer

    Thank you to everyone who offered help and suggestions. I just had a Pet-Ct scan. Results are concerning. A very tiny spot on my right lung but the tumor board it was presented to are not too concerned right now so putting a watch on it. However a mass was found to the left near my tailbone so now they are not gong to give me chemo but sending me to a radiation oncologist to see if they can give me more radiation. I will see my colorectal surgeon this week to see what he thinks. The tumor board has ruled out more surgery for now, thank God. My oncologist left the practice so have a new one. He is young but did his fellowship at USC. The good news is I feel great and getting out more so life is good!!! 

    u574713

    I send prayers and good thoughts to you.  I hope the new oncologist will have a plan for you.  I'm so glad you are feeling well!

    Martha

  • hogchick
    hogchick Member Posts: 42
    u574713

    I had the same chemo cocktail and my cancer metastastized to my liver and lungs during treatmeent.  My doctor told me the same thing as yours did.  The only option was a chemo coctail that would make me sicker than the first one so I opted out.  If I had tumors appear during the first treatment, what's the point.  My doctor agreed and got me on a list for level one trial drugs  that may shrink the tumors and give a bit more time and may have milder side effects. Ask you doctor if there are any that she knows of.

  • tallorder5793
    tallorder5793 Member Posts: 67
    chemo drugs

    Hello, I was diagnosed Stage IV w. mets to liver and node in March 2014. In April, I started full blast of carboplatin, taxol and avastin. In September, I was told NED in anal canal. At that point, I was put on reduced amount of taxol and avastin - but no carboplatin. Even at the reduced amount, I continued to show progress and reduced tumor growth. Two weeks ago, the doctor told me NED w liver mets. The node has shown some growth... though I will going for radiation soon.

    For what it's worth. 

    Wishing you all the best w your decision making process.