Anal Cancer Trials

MartSwil
MartSwil Member Posts: 12
edited June 2015 in Anal Cancer #1

i was diagnosed with anal cancer first in March 2011.  At the time it was considered in situ and no further treatment was needed.  I was being checked by both my oncologist and surgeon Every three months.  In August of 2011 it came back and was invasive.  More surgery and chemotherapy and radiation concurrently that almost killed me. The radiation treatment was my definition of hell.  But I was told it had a 90 percent cure rate.  I was only 51 so I told them to hit me with whatever they had.   Three years later I started experiencing lower abdominal pain.  I went to the ER and had a CT scan which was clear and told to see a GI doctor.  I was told I had IBS and put on Meds.   I felt better, not 100 percent but better.  Last month the lower abdominal pain came back.  After phone calls to all my doctors, I ended up in ER again.  This time I'm told I have a mass around the uterer tube from my left kidney blicking the urine from going to my bladder.  At this point I was admitted in the hospital.  A nephrostomy bag was inserted in my left kidney and a biopsy confirmed the mass was anal cancer reoccurrence.  

 

I have aver started chemo (1 of 4) of Cisplatin and 5FU To shrink the tumor since it is inoperable.   After that they will do a CT scan to see if the tumor has shrunk.   Then they will direct radiation at the tumor.  But it is not curable since it invaded my pelvic wall and muscle.  Not the news I wanted to hear.  I was also told it will mostly come back and my life expectancy is 1-2 years.  Also not the news I wanted to hear.  I'm 55 and was in the midst of planning my only daughter's wedding.  I did go for a second opinion at the University of Colorado Hospital in Denver. 

 

In 2001 I was diagnosed with stage 3a breast cancer and given a 50 percent five year survival Prognosis.    I became active in Relaty for Life and over six years raised over $70,000 for ASC.  I need your help now.  I'm scared, not sure what to do.  I want to live.  Are there any trials out there?  Is there any hope for me?   One oncologist told mr cancer always wins.  Is he right?

 

Just an update.  Yesterday finished my second round of cisplatin and I am home now with my 5fu fanny pack. My oncologist actually felt the tumor and thinks it shrunk from 3 cm to 2 after one chemo treatment.  I will have a CT scan on July 1st.  I am also seeing a therapist weekly And reading a book called Radical remissions by Kelly A Turner PHD.  An excellent book for anyone given a terminal diagnosis. Ive starting many of the suggestions in her book.  Including giving up sugar, organic food, keeping a journal, etc. I've been in contact with MD Anderson and they sent me a brochure   I have also told my oncologist I want to participate in the trial in Houston   I was told by MD Anderson I have to be a patient there and make an appointment with Dr Eng but I'm in the middle of my treatment in Colorado   Any suggestions:  I would at least send her my medical history and recent scans to see if I even qualify for the trial. Those

 

who are already Dr Eng's patient, do you have any suggestions?   I want to live and I am going to beat this not only to see my only daughter's wedding but my grandchildren too  

 

 

Comments

  • dpatter03
    dpatter03 Member Posts: 23
    #2
    I am sorry you have had a

    I am sorry you have had a re-currence.   Is there a way you can get a major cancer center consult?   MD Anderson or Sloan Ketterling are high in my humble book of expertise.   There are trials out there.    My Mom was commenting on cancer surgery my Dad had...locally (in Omaha) Dad's surgery was a big deal...a 14 hour surgery.    At MD Anderson, it was kind of a ho-hum surgery because MD Anderson did so many of them.

     

    There are lots of experienced people on this blog...they should have excellent info for you.   I'm too much of a newbie.

     

    Prayers to you!

  • mp327
    mp327 Member Posts: 4,440 Member
    #3
    MartSwil

    I'm very sorry to hear of your recurrence.  If it were me, I would contact MD Anderson in Houston, Sloan-Kettering in NYC or University of California/San Francisco.  The doctor you would want to see at MDA would be Dr. Catherine Eng.  Dr. Martin Weiser at MSK comes highly recommended.  Dr. Michael Berry at UCSF has seen a couple of people I've met through the websites and they absolute love him.  If it were me, I'd start with Dr. Eng.  She is up on all current trials and is one of the leading experts in the U.S. when it comes to metastatic anal cancer.

    I wish you all the very best and hope you can find a trial that will accept you.  Please keep us posted.

    Martha

  • MartSwil
    MartSwil Member Posts: 12
    #4
    mp327 said:

    MartSwil

    I'm very sorry to hear of your recurrence.  If it were me, I would contact MD Anderson in Houston, Sloan-Kettering in NYC or University of California/San Francisco.  The doctor you would want to see at MDA would be Dr. Catherine Eng.  Dr. Martin Weiser at MSK comes highly recommended.  Dr. Michael Berry at UCSF has seen a couple of people I've met through the websites and they absolute love him.  If it were me, I'd start with Dr. Eng.  She is up on all current trials and is one of the leading experts in the U.S. when it comes to metastatic anal cancer.

    I wish you all the very best and hope you can find a trial that will accept you.  Please keep us posted.

    Martha

    Thank You

    Thank You Martha 

  • sephie
    sephie Member Posts: 650 Member
    #5
    please go to major center

    this will at least give you some hope from docs  that have seen lots of these......i hate to mention it but it might save your life....colostomy where perhaps they can remove all affected areas????if you go to MD anderson ,,, they will give you names of places close by to stay that are low cost, if this is an issue......also we have a Patients for Pilots program here where pilots donate flights to take patients  to major hospitals then a ground angel will take you to the hospital from whatever airport you land in......perhaps there is one near you.....thinkning of you.... hugs....sephie

  • nicotianna
    nicotianna Member Posts: 209
    #6
    clinical trial for recurrent AC

    I agree w/Martha.  See Cathy Eng at MDA.  She is starting a trial for an immunotherpy drug, nivolumab.  Also, check out the NCI web site.  There is another interesting trial listed for recurrent anal cancer.

    Nic

  • MartSwil
    MartSwil Member Posts: 12
    #7
    nicotianna said:

    clinical trial for recurrent AC

    I agree w/Martha.  See Cathy Eng at MDA.  She is starting a trial for an immunotherpy drug, nivolumab.  Also, check out the NCI web site.  There is another interesting trial listed for recurrent anal cancer.

    Nic

    Thank you 
     

    Thank you 

     

  • MartSwil
    MartSwil Member Posts: 12
    #8
    sephie said:

    please go to major center

    this will at least give you some hope from docs  that have seen lots of these......i hate to mention it but it might save your life....colostomy where perhaps they can remove all affected areas????if you go to MD anderson ,,, they will give you names of places close by to stay that are low cost, if this is an issue......also we have a Patients for Pilots program here where pilots donate flights to take patients  to major hospitals then a ground angel will take you to the hospital from whatever airport you land in......perhaps there is one near you.....thinkning of you.... hugs....sephie

    Thank You

    docs here say they would have to take my bladder and rectum out and they won't do it. Not sure I'm ready for that.  

     

  • sephie
    sephie Member Posts: 650 Member
    #9
    MartSwil said:

    Thank You

    docs here say they would have to take my bladder and rectum out and they won't do it. Not sure I'm ready for that.  

     

    hard decision

    i do understand....would be a very hard thing to do.....just to let you know,,, MD anderson is great if you can get there.....check out the trials and see.... at least get their opinion .....i do have a friend who had anal cancer reoccurence  (she was treated at MD Anderson ) 3 years ago and MD anderson surgeon did do colostomy ....there were no trials at time for anything better....she is thriving....it did take some healing time and adjustment but she is really doing great..... MD anderson will do everything they can to NOT do colostomy so you might be perfect for trial.....i am not trying to scare you or upset you....just more info.....hugs   sephie

  • eihtak
    eihtak Member Posts: 1,473 Member
    #10
    MartSwil said:

    Thank you 
     

    Thank you 

     

    MartSwil.....

    So very sorry for the spot you are now in. As others have said do whatever further checking you can manage. If you find that these surgeries are your only option please try to find an ostomy supprt group to help you through. I have a colostomy as part of my treatment for anal cancer. (4yrs now) While the adjustment period/healing is frustrating, I am now at a place of easy management and am able to do all of the activities I did prior to this surgery. I consider myself fairly active but took a bit of trial and error to get there. In my support group there are people with all sorts of ostomies (colostomy or ileostomy for bowels and urostomy for bladder) and some of them have both. Obviously having two presents double the management, but with helpful advice from others and a good stoma or wound care nurse it is certainly doable and gives you the option of "life."

    I will keep you in my thoughts and prayers as you face this challenge.

    katheryn

  • Ouch_Ouch_Ouch
    Ouch_Ouch_Ouch Member Posts: 508 Member
    #11
    MartSwil said:

    Thank you 
     

    Thank you 

     

    All registered clinical trials.

    Clinical trials registry -

    * Over view - http://www.cancer.gov/about-cancer/treatment/clinical-trials/search

    * For all registered trials, National Cancer Institute (NCI) and other sponsers, scroll down to "Trial ID/Sponsor" and under "Sponser of Trial", select "ALL" - http://www.cancer.gov/about-cancer/treatment/clinical-trials/search

  • MartSwil
    MartSwil Member Posts: 12
    #12
    eihtak said:

    MartSwil.....

    So very sorry for the spot you are now in. As others have said do whatever further checking you can manage. If you find that these surgeries are your only option please try to find an ostomy supprt group to help you through. I have a colostomy as part of my treatment for anal cancer. (4yrs now) While the adjustment period/healing is frustrating, I am now at a place of easy management and am able to do all of the activities I did prior to this surgery. I consider myself fairly active but took a bit of trial and error to get there. In my support group there are people with all sorts of ostomies (colostomy or ileostomy for bowels and urostomy for bladder) and some of them have both. Obviously having two presents double the management, but with helpful advice from others and a good stoma or wound care nurse it is certainly doable and gives you the option of "life."

    I will keep you in my thoughts and prayers as you face this challenge.

    katheryn

    Thank You

    my current oncologist said they only do that surgery if there's low risk of reoccurrence.  ci would need both bladder and rectum removed. 

     

     

  • Lorikat
    Lorikat Member Posts: 681 Member
    #13
    Dr. Eng at MDA for sure.  She

    Dr. Eng at MDA for sure.  She is my doctor and is wonderful.  My tumor was already invasive when I saw her.  Going on four years NED.  GOD bless you.

  • Delarno
    Delarno Member Posts: 14
    #14
    Sorry to not only hear about

    Sorry to not only hear about your struggle but mostly the tone you use on the post; it seems you already accept defeat. The truth, some people become completely cancer-free and healthy after they were sent home to die with metastatic cancer. You can be one of them... You need to believe it is not over until you believe it is over.

    If your health care provider tells you there is nothing left the conventional medicine can do , you can try alternatives and adapt your diet to your health status… It is against the ACS to talk about a product or paste any ADS link here; therefore, I cannot refer you to any service or site. Search Youtube about alternative cancer treatments and use your mind power believing you will successfully fight the cancer.

  • Ouch_Ouch_Ouch
    Ouch_Ouch_Ouch Member Posts: 508 Member
    #15
    Delarno said:

    Sorry to not only hear about

    Sorry to not only hear about your struggle but mostly the tone you use on the post; it seems you already accept defeat. The truth, some people become completely cancer-free and healthy after they were sent home to die with metastatic cancer. You can be one of them... You need to believe it is not over until you believe it is over.

    If your health care provider tells you there is nothing left the conventional medicine can do , you can try alternatives and adapt your diet to your health status… It is against the ACS to talk about a product or paste any ADS link here; therefore, I cannot refer you to any service or site. Search Youtube about alternative cancer treatments and use your mind power believing you will successfully fight the cancer.

    I don't believe it.

    MartSwil wrote: "I want to live." and asked for help to find a way. That is a strong signal that s/he has not given up. There are excellent examples on this forum of people for whom the cancer did not win and for whom their medical team did not quit. MartSwil has been given good information, though I don't know if s/he person has the financial resources to go to Texas. No matter what the descision is, I think a deep think is in order regarding ever returning to that one oncologist.

    (I say "s/he" because after all, men get breast cancer, too, though nowhere near the numbers of woman. I don't want to make assumptions.)

  • nicotianna
    nicotianna Member Posts: 209
    #16
    Ouch_Ouch_Ouch said:

    I don't believe it.

    MartSwil wrote: "I want to live." and asked for help to find a way. That is a strong signal that s/he has not given up. There are excellent examples on this forum of people for whom the cancer did not win and for whom their medical team did not quit. MartSwil has been given good information, though I don't know if s/he person has the financial resources to go to Texas. No matter what the descision is, I think a deep think is in order regarding ever returning to that one oncologist.

    (I say "s/he" because after all, men get breast cancer, too, though nowhere near the numbers of woman. I don't want to make assumptions.)

    I don't believe it

    I agree totally w/Ouch!  Plus...first find scientific proof that "alternate" therapies work!

    Nic

  • MartSwil
    MartSwil Member Posts: 12
    #17
    Update

    i just returned from MD AndersoN.  

    Dr Eng also told me I did not qualify for the trial.  1.  There was a wait list and 2) she did not consider my cancer metasized. My 4 cm tumor is on my left uterer tube and has invaded my pelvic wall, muscle and sciatic nerve.  All my reports say I have met disease but Dr Eng considers it localized. 

     

    Dr Eng brought my case to the tumor board and the surgeon, Dr Skibber recommended surgery to remove the tumor and part of the tube but I  will be left with colostomy bag   I have an appt in two weeks to talk to him   I am very nervous since two tumor boards in Colorado where I live told me surgery is out of the question   My trip to see Dr Eng was for the trial and now I'm faced with making this decision   Does anyone know anything about Dr john Skibber   Dr Enf says he's very gifted   I could not find much on the internet other than 1 malpractice suit in 2001  

     

     

     

  • cbokay
    cbokay Member Posts: 21 Member
    #18
    Martin-O'Neil Cancer Center

     

     

    Dr Smith is my oncologist.  He, and Dr Tate, saved my life.  Martin-O'Neil Cancer Center in St. Helena, CA has the State-of-the-Art equipment.  You can't go wrong by calling the number in this message. 

    "Patients interested in exploring clinical trials should start by calling Jennifer at 707-967-5721. "Based on this initial call, if an onsite consultation is in the patient’s best interest, we recommend they come to the center for a consultation with Cancer Center Medical Director Gregory Smith, MD, a medical oncologist and hematologist." Dr. Smith reviews each case, assesses the most appropriate clinical trial options, and recommends next steps."

     For more information or assistance with identifying clinical trials, call Jennifer Egan at 707-967-5721.

    https://www.adventisthealth.org/napa-valley/Documents/Live%20Younger%20Longer/FnlStHelena-NVSum11.pdf

     

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