Sarah Cannon Research Center

MartSwil
MartSwil Member Posts: 12
in Anal Cancer #1

It's been a while since I posted to the CSN.  I was diagnosed with a reoccurence of inoperable anal cancer about a year ago.  My first occurence I went through concurrent chemotheraphy and radiation and was given a 90 percent chance of living.  Things were good until last April/May when I experienced severe pain.  An ER visit confirmed a mass in my pelvic wall and muscle tissue.  I was given 3-6 months to live if I did nothing.  The treatment plan from my oncologist was to shrink the tumor and then radiate what was left with the possibility of surgery after the tumor shrunk.  The tumor was pushing against my bladder wall, uterer tube and sciatic nerve which required me to have a bag and then eventually I was able to have a stent to allow urine to pass from my kidney to my bladder.  I underwent Chemotherapy with Cisplatin and it did nothing to shrink the tumor.  

I decided to go to MD Anderson after reading posts on this board.  I met with Dr. Eng hoping to get into a clinical trial that she had available for reoccuring and metastic anal cancer.  After a brief discussion, she told me she considered my cancer as localized and that I should have surgery and to meet with their surgeon. Even after I told her two tumor boards in Colorado told me I was not a candidate for surgery.  While I was at MD Anderson, I experienced a severe UTI bladder infection and was hospitalized.  I did not have a good experience at MD Anderson.  I will not go into the details, but after my visit I was very happy to get out of that hospital.  

When I returned from Houston, I then underwent sterotactic radiation.  Because of the location of the tumor, they could not radiate the entire tumor.  After the CT scan, it again showed no impact on the tumor and in fact it had increased in size.  

I am now participating in a clinical trial at the Sarah Cannon Research Center in Denver, CO.  I'm half-way through an will have a CT scan again early April.  I've been happy with the facility and the doctor who came from MD Anderson and spent eight years there.  I'm learning to deal with the daily struggle of pain management and my ever changing bowel habits from consitipation to several bowel movements a day.  As I'm typing this, I'm wearing depends because I was so constipated, I overdid it with the miralax, etc.  It find it painful to sit for any length of time and I also have a burning sensation in my vaginal area.  I'm currently taking Oxycotin (8 hours) and Gabapentin as a nerve blocker.  I take Oxycoden for any break through pain.  Every day is a struggle but my faith in the Lord keeps me moving forward.  

I feel very fortunate to still be here after I was told things like "cancer always win", you have three to six months to live, plan a trip and decide what you want to do with the last year of your life.  I am 56 years old and I want to live.  Fortunately, I have strong faith in the Lord and prayed to be at my only daughter's wedding next month.  I'm almost there.  

I'm looking for suggestions on how other women have dealth with the pain from their anal cancer and also anyone who has had any experience with the Sarah Cannon Research Institute.  

Thank you and God bless

 

 

 

 

 

Comments

  • mp327
    mp327 Member Posts: 4,440 Member
    #2
    MartSwil

    I am glad you posted an update but sorry to hear about your current status.  It's unfortunate that your experience at MDA was not a good one, but the facility in Denver sounds promising.  I hope the clinical trial with give you encouraging results.  You have an amazing attitude, which will work in your favor.  Keep the faith!  You WILL get to attend your daughter's wedding. 

    Please keep us posted.

  • eihtak
    eihtak Member Posts: 1,473 Member
    #3
    MartSwil....

    Hi,

    I am so sorry that this continues to be a challenge but happy to hear of the clinical trial and will pray for great results!

    I was initially dx with anal cancer Stage 3b in 2011 and treated with chemo/rad as well as ostomy surgery. Then, in 2012 a rare breast cancer and treated with a double matectomy. Lastly (or so I pray) dx with a recurrance of the anal cancer with mets to my lung and treated with a thoracotomy to remove my left lower lobe followed by chemo.

    My most recent scan has revealed no new areas of concern though not long after the chemo a blood clot on my good lung required on-going treatment.....but I do feel great at this time.

    During my initial cancer the pain was absolutely horrific and I had some complications landing me in the hospital followed by a nursing home. Fortunately I was able to manage much of the pain by staying ahead of it (sort of). I took a high dose of oxycontin every 12 hours and oxycodone in between....so much like you. Do not skip a dose, and if / when you do decide to stop the meds, get advice on a weaning off schedule. Other than the pain meds, I took a lot of showers with a hand held nozzle that was just kind of soothing to that area.

    My faith is also strong, and during my treatment last spring prayed for help with a daughters wedding right in the middle of chemo. I not only was there but did the flowers and now 1 year later just attended her baby shower!!  Never never underestimate the power of prayer, and know that you are never alone in any of this.

    I will add you to my personal thoughts and prayers as you move forward through all of this....pick out a lovely dress for the wedding and plan on a fantastic day!

    katheryn

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