New Hope for Anal Cancer Patients

Comments

  • Cazz
    Cazz Member Posts: 106
    ADXS

     I saw an earlier trial for ADXS for the initial radiation/chemo treatment, I guess it was the phase II trial.  Unfortunately, to get into that you couldn't have received any prior chemo treatment at all.  I'm assuming that its the same for the Phase III trial, which means that most of us would not be eligible.  However, Dr. Eng did promise to put me in a new trial that should be opening up soon, so maybe this phase will include metastatic patients.

    Its good to see anal cancer getting more attention, the more people working on it the better.

  • nicotianna
    nicotianna Member Posts: 209
    Cazz said:

    ADXS

     I saw an earlier trial for ADXS for the initial radiation/chemo treatment, I guess it was the phase II trial.  Unfortunately, to get into that you couldn't have received any prior chemo treatment at all.  I'm assuming that its the same for the Phase III trial, which means that most of us would not be eligible.  However, Dr. Eng did promise to put me in a new trial that should be opening up soon, so maybe this phase will include metastatic patients.

    Its good to see anal cancer getting more attention, the more people working on it the better.

    New trial

    Thanks for posting Martha!  My impression is the trial is for newly diagnosed AC pts.  Eng mentions IMRT radiation treatment.  AC patients who have received XRT usually receive the maximum dose so that would automatically disqualify him/her.  I think that the clinical trial info would be most valuable for oncologists to refer their newly diagnosed AC patients for evaluation.

    Nic

  • Cazz
    Cazz Member Posts: 106

    New trial

    Thanks for posting Martha!  My impression is the trial is for newly diagnosed AC pts.  Eng mentions IMRT radiation treatment.  AC patients who have received XRT usually receive the maximum dose so that would automatically disqualify him/her.  I think that the clinical trial info would be most valuable for oncologists to refer their newly diagnosed AC patients for evaluation.

    Nic

    Video

    One thing that surprised me in the video was when Dr Eng said that bulky tumors - those originally over 5cm - had a very high recurrence rate.  That got me looking through all my papers and I couldn't find anywhere how big mine was.  All they told me was "the size of a golf ball" - do you think that's more, or less than 5 cm?

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

    Video

    One thing that surprised me in the video was when Dr Eng said that bulky tumors - those originally over 5cm - had a very high recurrence rate.  That got me looking through all my papers and I couldn't find anywhere how big mine was.  All they told me was "the size of a golf ball" - do you think that's more, or less than 5 cm?

    Cazz

    A golf ball is 4.27 cm.  I'm very surprised that somewhere in your path report the size of the tumor is not given.  I thought it was standard practice to measure them and record that information.

    Martha

  • pializ
    pializ Member Posts: 508 Member
    mp327 said:

    Cazz

    A golf ball is 4.27 cm.  I'm very surprised that somewhere in your path report the size of the tumor is not given.  I thought it was standard practice to measure them and record that information.

    Martha

    Interesting

    The future randomised trial sounds interesting, and it's good to know that research is being done for this rare and stigmatised cancer. I still get very frustrated by the pink ribbons, but i doubt AC will ever be that accepted as a talking point or tug at people's purse strings to donate to research etc. Sad though, because only a tiny proportion of people start out in life without an anus

    Thanks for sharing Martha

    I am grateful for your ongoing information gathering 

    Liz

  • nicotianna
    nicotianna Member Posts: 209
    mp327 said:

    Cazz

    A golf ball is 4.27 cm.  I'm very surprised that somewhere in your path report the size of the tumor is not given.  I thought it was standard practice to measure them and record that information.

    Martha

    path reports

    The path report would only give the measurement of the specimen received.  I think that w/AC, the usual process involves a biopsy first.  I think, if indicated, the chemo/radiation treatment is initiatated.  If it's a colostomy/AP resection, then the whole specimen might be measured.  Perhaps, Cazz's tumor was visualized on a CT or MRI?

    Nic

  • tallorder5793
    tallorder5793 Member Posts: 67
    Thank you for sharing

    Dr. Eng is my doctor. I am stage 4 and have been for two years.

  • Cazz
    Cazz Member Posts: 106

    path reports

    The path report would only give the measurement of the specimen received.  I think that w/AC, the usual process involves a biopsy first.  I think, if indicated, the chemo/radiation treatment is initiatated.  If it's a colostomy/AP resection, then the whole specimen might be measured.  Perhaps, Cazz's tumor was visualized on a CT or MRI?

    Nic

    Size - does it matter?

    I still can't find any measurement, although I have a beautiful color photo of it from the colonoscopy!  I think nobody measured it because it was so close that it could easily be felt with a finger - and you wouldn't believe the number of drs, nurses, interns etc. that stuck their finger up my bum over that initial time period, I think just to see what it felt like.  It all just confirmed my opinion that I don't think I'd like anal sex, thank you!  I did have an initial CT and PET scan but was not as good at asking for and filing everything as I am now, the CT scan may yet show up in a file marked "cancer misc" or some such.  Its no big deal, it was as big as it was and, as of a month ago its no longer there, and I'm just hoping it stays away.

    Tallorder: maybe we will meet one day and can have a nice chat during the hour that we inevitably have to wait to see Dr Eng!  My next appointment is on March 21 for a CT and to see Dr Eng on the 22nd.

    Carol

     

     

     

  • jcruz
    jcruz Member Posts: 379 Member
    Cazz said:

    Video

    One thing that surprised me in the video was when Dr Eng said that bulky tumors - those originally over 5cm - had a very high recurrence rate.  That got me looking through all my papers and I couldn't find anywhere how big mine was.  All they told me was "the size of a golf ball" - do you think that's more, or less than 5 cm?

    size

    The estimated size of my tumor was noted on every scan report, not on path reports.  CT, PET and MRI all had size noted and all slightly different but close.  I had a roughly 5-6 cm tumor.

    Found this page on a National Cancer Institute site. At the bottom of the page:  images of tumor size equivalents

     

     

  • pializ
    pializ Member Posts: 508 Member

    Thank you for sharing

    Dr. Eng is my doctor. I am stage 4 and have been for two years.

    Size

    My colorectal surgeon told me after EUA to biopsy that tumour was 3cm but of course some was removed for path examination. However, my oncologist always referred to it as 1.5 cams as shown on scans which post dated the biopsy.

  • tallorder5793
    tallorder5793 Member Posts: 67
    Cazz said:

    Size - does it matter?

    I still can't find any measurement, although I have a beautiful color photo of it from the colonoscopy!  I think nobody measured it because it was so close that it could easily be felt with a finger - and you wouldn't believe the number of drs, nurses, interns etc. that stuck their finger up my bum over that initial time period, I think just to see what it felt like.  It all just confirmed my opinion that I don't think I'd like anal sex, thank you!  I did have an initial CT and PET scan but was not as good at asking for and filing everything as I am now, the CT scan may yet show up in a file marked "cancer misc" or some such.  Its no big deal, it was as big as it was and, as of a month ago its no longer there, and I'm just hoping it stays away.

    Tallorder: maybe we will meet one day and can have a nice chat during the hour that we inevitably have to wait to see Dr Eng!  My next appointment is on March 21 for a CT and to see Dr Eng on the 22nd.

    Carol

     

     

     

    Thanks Carol

    I would enjoy that. I'm due for a visit in early April. Wishing you all the best! Please keep us posted.