Treatment Question. Pleae Help me.

SunflowerLady
SunflowerLady Member Posts: 7 Member
in Anal Cancer #1

I was diagnosed with Anal Cancer on July 7th.  I am just now getting ready to start treatments. I have a question about treatment plan for 5-FU. I am being told that I will be getting 5-FU for 4 weeks straight then one week off and one more week after that. Everything I have read has lead me to believe it is given for one week at first and then another week at about the 5th week of treatment. Please let me know if I am just losing it or if I really need to question what is going on.

Comments

  • mp327
    mp327 Member Posts: 4,440 Member
    #2
    Sunflower Lady

    So sorry your diagnosis has brought you here.  Please go to the following site, register, and then you'll have access to the most up-to-date treatment guidelines for anal cancer.  www.NCCN.org  The usual schedule for the 5FU is week one and week five.  Please print out the guidelines from the NCCN site and discuss this with your doctor.  If there is a different schedule for delivery of 5FU, I'm not aware of it and it does not appear in the guidelines.  I wish you all the very best.

    Martha

  • EvelynB
    EvelynB Member Posts: 72
    #3
    My treatment was 5fu on week

    My treatment was 5fu on week one and week five also. I would definitely question that. So sorry for your diagnosis. I wish you the best.   

  • z
    z Member Posts: 1,414 Member
    #4
    Sunflowerlady

    Hello, I had the 5FU week one and five as well.  In the 1st week I also had one treatment of mytomicin (sp).  I wish you well and keep us posted.  Lori

  • Lorikat
    Lorikat Member Posts: 681 Member
    #5
    I had a fanny pack with the

    I had a fanny pack with the 5fu 5days out of the week.  Cisplatin once a week...

  • SunflowerLady
    SunflowerLady Member Posts: 7 Member
    #6
    Thank you all for your input.

    Thank you all for your input. I am definitely going to go talk to the doctor before we start this process next week. My gut is telling me to get an answer asap. I did get a copy of 20115 protocol from a peer.

  • mxperry220
    mxperry220 Member Posts: 496 Member
    #7
    Treatment

    I had mytomycin and 5 FU in week one and week 5FU(wore fanny pack 24-7 I or 5 days) of treatment process.  I was diagnosed as Stage 2 anal cancer in 2008.

    Mike

  • tanda
    tanda Member Posts: 174 Member
    #8
    Sunflower Lady

    Hi Sunflower Lady,

     

    Where are you being treated/ 

    i wonder if your Dr is planning to use Xeloda, which is the pill form of 5-Fu and is usually given 5 days a week concurently with radiation.  I had mitomycin and Xeloda on day 1 (and radiation) and then Xeloda and radiation  M-F.  For some reason, I didn't get the second infusion of Mitomycin in the last week.

    This was the third protocol listed in the NCCN guidelines; I think it's Canadian.

    I requested Xeloda because I thought pills would be easier than a fanny pack. I read that Sloan-Kettering had been using Xeloda for the last few years and found it resultd in less heme toxicity.

     

     

    DOI: http://dx.doi.org/10.1016/j.ijrobp.2014.05.141 (article abstract of Memorial Sloan Kettering study

     

    Conclusions

    An adequately powered non-inferiority comparison of cape vs 5-FU is not numerically feasible in ASCC. Our data suggest that cape is associated with decreased Grade 3/4 heme toxicity when compared to standard 5-FU for pts undergoing definitive CRT for ASCC. The reduction in treatment breaks due to heme toxicity may be expected to yield improved outcomes. Moreover, since cape with MMC appears to be better tolerated, this regimen may serve as a backbone for further studies evaluating novel agents with CRT for ASCC.


     

  • SunflowerLady
    SunflowerLady Member Posts: 7 Member
    #9
    tanda said:

    Sunflower Lady

    Hi Sunflower Lady,

     

    Where are you being treated/ 

    i wonder if your Dr is planning to use Xeloda, which is the pill form of 5-Fu and is usually given 5 days a week concurently with radiation.  I had mitomycin and Xeloda on day 1 (and radiation) and then Xeloda and radiation  M-F.  For some reason, I didn't get the second infusion of Mitomycin in the last week.

    This was the third protocol listed in the NCCN guidelines; I think it's Canadian.

    I requested Xeloda because I thought pills would be easier than a fanny pack. I read that Sloan-Kettering had been using Xeloda for the last few years and found it resultd in less heme toxicity.

     

     

    DOI: http://dx.doi.org/10.1016/j.ijrobp.2014.05.141 (article abstract of Memorial Sloan Kettering study

     

    Conclusions

    An adequately powered non-inferiority comparison of cape vs 5-FU is not numerically feasible in ASCC. Our data suggest that cape is associated with decreased Grade 3/4 heme toxicity when compared to standard 5-FU for pts undergoing definitive CRT for ASCC. The reduction in treatment breaks due to heme toxicity may be expected to yield improved outcomes. Moreover, since cape with MMC appears to be better tolerated, this regimen may serve as a backbone for further studies evaluating novel agents with CRT for ASCC.


     

    I am on 5-FU. My doctor chose

    I am on 5-FU. My doctor chose this protocol because he has found that the side effects are much less. Also he explained that the medicine only lives for 30 minutes in your system. So getting all of it in one week is not much help when doing radiation. They feel having the chemo in your system while doing radiation helps. I am getting the same amount of medicine in 4 weeks that I would have gotten in one week. It is just spread out over time and in much smaller doses. I have had my chemo for 2 weeks. I have not been sick once yet. (Knock on woood) I am just now starting to feel the effects of radiation. Still have a long way to go but am glad to be on the right path.

     

    I hope that this may help others that may have to go through this. Something to talk to you doctors about. I will let you know how it all turns out.

    Thanks again for all the support.

  • Phoebesnow
    Phoebesnow Member Posts: 600 Member
    #10
    SunflowerLady said:

    I am on 5-FU. My doctor chose

    I am on 5-FU. My doctor chose this protocol because he has found that the side effects are much less. Also he explained that the medicine only lives for 30 minutes in your system. So getting all of it in one week is not much help when doing radiation. They feel having the chemo in your system while doing radiation helps. I am getting the same amount of medicine in 4 weeks that I would have gotten in one week. It is just spread out over time and in much smaller doses. I have had my chemo for 2 weeks. I have not been sick once yet. (Knock on woood) I am just now starting to feel the effects of radiation. Still have a long way to go but am glad to be on the right path.

     

    I hope that this may help others that may have to go through this. Something to talk to you doctors about. I will let you know how it all turns out.

    Thanks again for all the support.

    Treatment

    I am so glad you have started treatment.  

     

    Are you taking the 5 fu in pill form?

     

    have you had the mitomycin?

     

    what stage are you?

     

    I hope you pass thru treatment without or minimal side effects.

     

  • cbokay
    cbokay Member Posts: 21 Member
    #11
    Treatment

    It's been almost two years since my treatment for anal cancer stopped and I am NED.  As I recall I had six (6) weeks of radiation, 5 times a week for about 15 minutes a treatment.  And I had chemo administered through a PiCC line, seven (7) days each for the first and sixth weeks.  I honestly don't think it was the 1st and 5th for me.  But crazy as it sounds, we had the Thanksgiving holiday in there and that threw a couple days off.  Humph!  I'm scratchin' my head because I can't remember.

    You will do fine.  It goes by faster than you think.  And you will get so much TLC from the nursing staff.  And you and other cancer patients at the hospital will find each other and bond.  That's the beauty in going through the treatment, when you can offer love and support to another who you don't even know.

    Jesus loves you, and so do I.

    CB

  • SunflowerLady
    SunflowerLady Member Posts: 7 Member
    #12
    Stage 2 treatment experience

    So, I was diagnosed  July 7th, 2015 with stage 2 anal cancer. I followed all the protocol for treatment. I had 31 days of radiation, Monday thru Friday, I will say this was not near as bad as I had imagined it would be. the only thing I did different then any thing I read or was told to do was I soaked three to four times a week in Dr. Teals Epsom salts. I would soak anywhere from 20 minutes to an hour. My favorite kind is Ginger and clay, for detox and energize. I had very little burning with radiation. I only used desitine maybe ten times total. I truly believe the soaks made a huge difference. As for my chemo it also was not a terrible experience. I went in, had the mitomyicin, then left with a pump full of 5FU to wear 24/7 for 4 weeks. I went in once a week for blood draws and refill. I then got a two week break. I now have it back on 24/7 for 17 more days. Having my treatment done this way almost completely eliminated side effects. I never got sick, I have not lost my hair, (knock on wood). I did struggle with fatigue, and chemo messed with my depression and anxiety med, but just added zanex to off set and I can deal better. I do take Ibuprophen PM at night to help my mind settle so I sleep better.

     

    I just wanted to share my story. Cancer is not something any of us wanted to have to face. I stayed positive and followed my doctors advice and threw in a coulpe of my own relaxing remedies. Said a prayer every day. Now I am nearing the end of treatment and will soon be looking to have a clean slate again.

    God Bless any one whos life has been touched by cancer of any kind. I know the true meaning of losing some one to cancer as i lost my mother to leukemia at the age of 7. I am now 52 and was blessed my body told me there was something wrong before it grew any farther. I thank God every day for that.

    May all your days be filled with love and support.

     

     

  • mp327
    mp327 Member Posts: 4,440 Member
    #13
    SunflowerLady said:

    Stage 2 treatment experience

    So, I was diagnosed  July 7th, 2015 with stage 2 anal cancer. I followed all the protocol for treatment. I had 31 days of radiation, Monday thru Friday, I will say this was not near as bad as I had imagined it would be. the only thing I did different then any thing I read or was told to do was I soaked three to four times a week in Dr. Teals Epsom salts. I would soak anywhere from 20 minutes to an hour. My favorite kind is Ginger and clay, for detox and energize. I had very little burning with radiation. I only used desitine maybe ten times total. I truly believe the soaks made a huge difference. As for my chemo it also was not a terrible experience. I went in, had the mitomyicin, then left with a pump full of 5FU to wear 24/7 for 4 weeks. I went in once a week for blood draws and refill. I then got a two week break. I now have it back on 24/7 for 17 more days. Having my treatment done this way almost completely eliminated side effects. I never got sick, I have not lost my hair, (knock on wood). I did struggle with fatigue, and chemo messed with my depression and anxiety med, but just added zanex to off set and I can deal better. I do take Ibuprophen PM at night to help my mind settle so I sleep better.

     

    I just wanted to share my story. Cancer is not something any of us wanted to have to face. I stayed positive and followed my doctors advice and threw in a coulpe of my own relaxing remedies. Said a prayer every day. Now I am nearing the end of treatment and will soon be looking to have a clean slate again.

    God Bless any one whos life has been touched by cancer of any kind. I know the true meaning of losing some one to cancer as i lost my mother to leukemia at the age of 7. I am now 52 and was blessed my body told me there was something wrong before it grew any farther. I thank God every day for that.

    May all your days be filled with love and support.

     

     

    SunflowerLady

    Thanks for sharing the details of your treatment protocol with us.  I'm glad your side effects were not as bad as what I and other have experienced.  Perhaps the info you have provided will help someone in the future.  I hope you continue to do well and that your recovery is a smooth journey back to good health!

    Martha

  • danker
    danker Member Posts: 1,276 Member
    #14
    fu-5

    With colon cancer, I was given a chemo pump providing 1 1/4Ml per hr 24/7 of 5fu for 5 weeks!  Concurrently I recieved radiation. At end,given 6week rest before resection of colon.  I guess each oncologist has their own system.  Good Luck to you

     

  • csalek
    csalek Member Posts: 23 Member
    #15
    SunflowerLady said:

    Stage 2 treatment experience

    So, I was diagnosed  July 7th, 2015 with stage 2 anal cancer. I followed all the protocol for treatment. I had 31 days of radiation, Monday thru Friday, I will say this was not near as bad as I had imagined it would be. the only thing I did different then any thing I read or was told to do was I soaked three to four times a week in Dr. Teals Epsom salts. I would soak anywhere from 20 minutes to an hour. My favorite kind is Ginger and clay, for detox and energize. I had very little burning with radiation. I only used desitine maybe ten times total. I truly believe the soaks made a huge difference. As for my chemo it also was not a terrible experience. I went in, had the mitomyicin, then left with a pump full of 5FU to wear 24/7 for 4 weeks. I went in once a week for blood draws and refill. I then got a two week break. I now have it back on 24/7 for 17 more days. Having my treatment done this way almost completely eliminated side effects. I never got sick, I have not lost my hair, (knock on wood). I did struggle with fatigue, and chemo messed with my depression and anxiety med, but just added zanex to off set and I can deal better. I do take Ibuprophen PM at night to help my mind settle so I sleep better.

     

    I just wanted to share my story. Cancer is not something any of us wanted to have to face. I stayed positive and followed my doctors advice and threw in a coulpe of my own relaxing remedies. Said a prayer every day. Now I am nearing the end of treatment and will soon be looking to have a clean slate again.

    God Bless any one whos life has been touched by cancer of any kind. I know the true meaning of losing some one to cancer as i lost my mother to leukemia at the age of 7. I am now 52 and was blessed my body told me there was something wrong before it grew any farther. I thank God every day for that.

    May all your days be filled with love and support.

     

     

    waiting

    Just got diagnosed anot now have to wait two weeks to see the radiologist....seems so long. Thanks for yourr post...it helped to know you were diagnosed in July and did not start till September...is that right ?

     

  • mp327
    mp327 Member Posts: 4,440 Member
    #16
    csalek said:

    waiting

    Just got diagnosed anot now have to wait two weeks to see the radiologist....seems so long. Thanks for yourr post...it helped to know you were diagnosed in July and did not start till September...is that right ?

     

    csalek

    I was officially diagnosed on June 22nd. (back in 2008) and didn't start treatment until July 28th., about 5 weeks later.  It was a very long wait, so I feel your anxiety.  However, keep in mind that it takes time to get all of the preliminary things done prior to beginning treatment, such as staging, set up with an oncologist, etc.  I know it seems like things are moving slowly right now and you just want to get started with treatment and get it done, however, you want the treatment to be correct and effective.  Know that your medical team is gathering as much information as possible to get it right.

    Martha

  • csalek
    csalek Member Posts: 23 Member
    #17
    mp327 said:

    csalek

    I was officially diagnosed on June 22nd. (back in 2008) and didn't start treatment until July 28th., about 5 weeks later.  It was a very long wait, so I feel your anxiety.  However, keep in mind that it takes time to get all of the preliminary things done prior to beginning treatment, such as staging, set up with an oncologist, etc.  I know it seems like things are moving slowly right now and you just want to get started with treatment and get it done, however, you want the treatment to be correct and effective.  Know that your medical team is gathering as much information as possible to get it right.

    Martha

    Thanks Martha-I will try to

    Thanks Martha-I will try to relax. I did not know if it was longer then most....I know it was hard to get a radiologist appt...that is my longest wait. It iwll be about 6 weeks probably by the time I start treatment-right around Christmas !

  • Cornfused
    Cornfused Member Posts: 10
    #18
    SunflowerLady said:

    Thank you all for your input.

    Thank you all for your input. I am definitely going to go talk to the doctor before we start this process next week. My gut is telling me to get an answer asap. I did get a copy of 20115 protocol from a peer.

    Hi

    i had the pump for 4 days at the beginning and 4 days at the end. 5FU 

    along with 30 days of radiation. 

     

    Question them 

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