Survivor who did not have the second round of chemo

Cheyenne
Cheyenne Member Posts: 77
in Anal Cancer #1
Anyone here who is NED that did not get the second round of chemotherapy?

Comments

  • mp327
    mp327 Member Posts: 4,440 Member
    #2
    Cheyenne--
    This was not my personal experience. I do know of some people who did not receive the 2nd. dose of mitomycin--I'm not sure about the 5FU.
  • horsepad
    horsepad Member Posts: 146 Member
    #3
    I did not have a 2nd round
    I did not have a 2nd round of chemo. My radiation oncologist said it was up to my medical oncologist. He did not suggest it. I didn't realize people have could/should have a second round. I see my other medical oncologist in a couple weeks and will ask about it.
  • sandysp
    sandysp Member Posts: 868 Member
    #4
    horsepad said:

    I did not have a 2nd round
    I did not have a 2nd round of chemo. My radiation oncologist said it was up to my medical oncologist. He did not suggest it. I didn't realize people have could/should have a second round. I see my other medical oncologist in a couple weeks and will ask about it.

    Protocol
    I thought the second round was part of protocol for our type of cancer. I had squamous cell type. They had to reduce mine to 80% of dosage for me to continue to tale it simultaneous with the radiation since my counts were really low. My Oncologist said it was better to take a lower dosage and do it with the radiation for best results than to wait until the counts came up. Where were your treated. How long have you been cancer free? I think it would be great if people did not have to take that second round.
  • sephie
    sephie Member Posts: 650 Member
    #5
    sandysp said:

    Protocol
    I thought the second round was part of protocol for our type of cancer. I had squamous cell type. They had to reduce mine to 80% of dosage for me to continue to tale it simultaneous with the radiation since my counts were really low. My Oncologist said it was better to take a lower dosage and do it with the radiation for best results than to wait until the counts came up. Where were your treated. How long have you been cancer free? I think it would be great if people did not have to take that second round.

    2nd round
    i also had squamous cell and had the 2nd round reduced by 20 % and was in the hospital at the time. they just rolled me in on hospital bed and lifted me up to the radiation table and fit me in my molds. went to MDA. sephie
  • sandysp
    sandysp Member Posts: 868 Member
    #6
    sephie said:

    2nd round
    i also had squamous cell and had the 2nd round reduced by 20 % and was in the hospital at the time. they just rolled me in on hospital bed and lifted me up to the radiation table and fit me in my molds. went to MDA. sephie

    similar for me
    Sephie:
    I could not believe they took me from my hospital bed and lifted me onto the radiation table as sick as I was but they did. I never missed a day of radiation during my treatment at Sloan. MSK is known for being a very aggressive cancer treatment center and that's what I got for sure. I would be happy if it was not necessary for others to have the second round of chemo.
    But from what I researched it was protocol for Squamous Cell Anal Cancer at any stage. But it seemed odd that we would all get the same treatment. I hope everyone on this site gets a vaginal dilator from their radiologist! It's not something you think about at the time, but it will prove to be an important part of your treatment as time goes on and that's a good thing:-)
  • Cindy B
    Cindy B Member Posts: 9
    #7
    sandysp said:

    similar for me
    Sephie:
    I could not believe they took me from my hospital bed and lifted me onto the radiation table as sick as I was but they did. I never missed a day of radiation during my treatment at Sloan. MSK is known for being a very aggressive cancer treatment center and that's what I got for sure. I would be happy if it was not necessary for others to have the second round of chemo.
    But from what I researched it was protocol for Squamous Cell Anal Cancer at any stage. But it seemed odd that we would all get the same treatment. I hope everyone on this site gets a vaginal dilator from their radiologist! It's not something you think about at the time, but it will prove to be an important part of your treatment as time goes on and that's a good thing:-)

    Squamous cell
    Hi sandy

    Could you tell me more about your cancer....stage......how nauseous you were.....I'm starting treat eat soon.....scared.....had hodgkins lymphoma 23 yrs ago. Thanks Cindy b
  • horsepad
    horsepad Member Posts: 146 Member
    #8
    Cindy B said:

    Squamous cell
    Hi sandy

    Could you tell me more about your cancer....stage......how nauseous you were.....I'm starting treat eat soon.....scared.....had hodgkins lymphoma 23 yrs ago. Thanks Cindy b

    I am NED and had the
    I am NED and had the traditional 2 rounds of chemo during treatment. I am not sure I understand. You had more Chemo after the original treatment and being declared NED? If so, why would they want to do more chemo if you are NED? I don't understand. Wouldn't you save chemo treatments for reoccuring cancer? I thought the human body could only take so much chemo and then doctors do not allow any more.
  • Phoebesnow
    Phoebesnow Member Posts: 600 Member
    #9
    horsepad said:

    I am NED and had the
    I am NED and had the traditional 2 rounds of chemo during treatment. I am not sure I understand. You had more Chemo after the original treatment and being declared NED? If so, why would they want to do more chemo if you are NED? I don't understand. Wouldn't you save chemo treatments for reoccuring cancer? I thought the human body could only take so much chemo and then doctors do not allow any more.

    Protocol
    Apparently there are different protocols for tx. I insisted on the second round of chemo to include 5fu, they were only going to give the mito but I insisted on both.

    I recommend all patients to do there research b4 tx.
  • Phoebesnow
    Phoebesnow Member Posts: 600 Member
    #10
    Phoebesnow said:

    Protocol
    Apparently there are different protocols for tx. I insisted on the second round of chemo to include 5fu, they were only going to give the mito but I insisted on both.

    I recommend all patients to do there research b4 tx.

    Cindy
    Cindy don't be scared, u will be ok. Everyone here has gotten thru the tx and has recovered enough to live a full and productive life. It is 5-6 weeks of tx, which starts to become more difficult after the end of the second week for some not until the third week and others have no trouble at all. It takes a while to recover if u r badly burned, maybe another 2 weeks after tx.

    Look at it this way. Weeks for years.

    We r here for you.
  • rds711
    rds711 Member Posts: 113
    #11
    I did not get the 2nd round of Mitomycin
    Hi Cheyenne,

    I got a larger dose of mitomycin the first round and then none the second, did get the 5fu
    both times and I am NED. The mitomycin is so hard to come by or at least was in May, so my oncologist decided to do it that way. Hope all is well.

    Randy
  • ecodancer
    ecodancer Member Posts: 4
    #12
    horsepad said:

    I did not have a 2nd round
    I did not have a 2nd round of chemo. My radiation oncologist said it was up to my medical oncologist. He did not suggest it. I didn't realize people have could/should have a second round. I see my other medical oncologist in a couple weeks and will ask about it.

    2nd round of chemo for anal cancer, Stage 1
    I had such a violent reaction to the first round that I am considering not doing the second. I developed severe colitis as a result of it. I'm also receiving Hyperthermia, which potentiates the radiation.

    My counts are low, and I have major edema and weakness. I don't think I'll survive a second round; however, does anyone know anyone who had done only 1 round, and is 2 years out of treatment?

    Thanks.

    Ecodancer
  • mp327
    mp327 Member Posts: 4,440 Member
    #13
    ecodancer said:

    2nd round of chemo for anal cancer, Stage 1
    I had such a violent reaction to the first round that I am considering not doing the second. I developed severe colitis as a result of it. I'm also receiving Hyperthermia, which potentiates the radiation.

    My counts are low, and I have major edema and weakness. I don't think I'll survive a second round; however, does anyone know anyone who had done only 1 round, and is 2 years out of treatment?

    Thanks.

    Ecodancer

    2nd. round
    There seems to be a small percentage of us who did not receive the 2nd. round of mitomycin. I, however, received both rounds and am a 4-year survivor.
  • z810840b
    z810840b Member Posts: 207 Member
    #14
    rds711 said:

    I did not get the 2nd round of Mitomycin
    Hi Cheyenne,

    I got a larger dose of mitomycin the first round and then none the second, did get the 5fu
    both times and I am NED. The mitomycin is so hard to come by or at least was in May, so my oncologist decided to do it that way. Hope all is well.

    Randy

    mitomycin
    i did not get second round of mitomycin .I was told that is the protocol.I also knew someone who was treated four years before me.They gave her second round of mitomycin ,and she was so sick..had to be in hospital for 3 weeks.She later found out it was a mistake..oncologist screwed up. Just saying..
  • Marynb
    Marynb Member Posts: 1,118
    #15
    z810840b said:

    mitomycin
    i did not get second round of mitomycin .I was told that is the protocol.I also knew someone who was treated four years before me.They gave her second round of mitomycin ,and she was so sick..had to be in hospital for 3 weeks.She later found out it was a mistake..oncologist screwed up. Just saying..

    Treatment
    I had mitomycin for both rounds. I am not sure whether I can say I am ned(for this cancer, I had 2 types) . I did not have scan after treatments, just dre and scope. Nothing visible to the naked eye, can I say I am NED really? I guess so.
  • sandysp
    sandysp Member Posts: 868 Member
    #16
    Cindy B said:

    Squamous cell
    Hi sandy

    Could you tell me more about your cancer....stage......how nauseous you were.....I'm starting treat eat soon.....scared.....had hodgkins lymphoma 23 yrs ago. Thanks Cindy b

    Hi Cindy
    I am sorry I missed your question here. I wasn't that nauseous. The drugs they gave me worked. How are you doing? Are you done with your treatment? I was stage 3 (T2N1MO) and all my scans are good now. It was rough but they gave me 80% of the dose (chemo) second time round. Make sure the people who treat you really know what they are doing. How are you?
  • sephie
    sephie Member Posts: 650 Member
    #17
    sandysp said:

    Hi Cindy
    I am sorry I missed your question here. I wasn't that nauseous. The drugs they gave me worked. How are you doing? Are you done with your treatment? I was stage 3 (T2N1MO) and all my scans are good now. It was rough but they gave me 80% of the dose (chemo) second time round. Make sure the people who treat you really know what they are doing. How are you?

    hi
    sandy, i got 80% dose on 2nd round also and was afraid that it was not enough. but they said i could not stand the full dose. but i did have the mito with it also. sephie

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