Continuing story on my treatment

Hi Everyone-

I was diagnosed early this year with stage 3 rectal cancer (1 lymph node). I went thru 7 sessions of chemo, then I started radiation. After a few sessions of that, my bowels became impacted and I had a permanent colostomy. Then I went back into radiation. After I finished that, there was to be a 2 month interval for me to rest up for my big surgery which would include removing my tumor and some nearby organs. A month before my surgery, I had an MRI which showed 2 enlarged lymph nodes and then I had to go have a biopsy and a PET scan. So yes, the cancer moved into the 2 lymph nodes putting me into stage 4 cancer. So my surgery was cancelled and now I am back in chemo but with diffierent drugs, I think I am doing Folfiri now. The oncologist told me neither my original chemo nor my radiation therapy had much effect on my tumor. 

Anyway, I have been living with tumor pain for more than a year and there aren't enough painkillers in the world to make it go away. Now that I have started chemo again, I noticed the pain has become worse. I'm not sure if that is a good thing because it means the chemo is working, or if its a bad thing. 

Does anyone else recall their rectal tumor pain becoming worse when starting folfiri?

Thanks-

Kelley

Comments

  • worriedson714
    worriedson714 Member Posts: 333 Member
    my dad

    My dad's story is almost the exact same thing stage 3 rectal cancer chemo and radiation had little effect on the tumor . Has a permanent colostomy and uristomy and he had several lymph nodes that where invovled but they considered him still stage 3 do you know why they say your stage 4 ? 

    To answer your question his tumor pain was worse to during chemo but he was on 5fu so i don't know if that helps you. 

  • KelleyTX
    KelleyTX Member Posts: 36
    edited October 2020 #3

    my dad

    My dad's story is almost the exact same thing stage 3 rectal cancer chemo and radiation had little effect on the tumor . Has a permanent colostomy and uristomy and he had several lymph nodes that where invovled but they considered him still stage 3 do you know why they say your stage 4 ? 

    To answer your question his tumor pain was worse to during chemo but he was on 5fu so i don't know if that helps you. 

    Hi-

    Hi-

    When I asked my oncologist how many sessions of the new chemo I would be having he didn't have an answer for me. He just said "Now you have metastatic disease". He made it sound like I would be on chemo the rest of my life.

    Kelley

  • Trubrit
    Trubrit Member Posts: 5,625 Member
    KelleyTX said:

    Hi-

    Hi-

    When I asked my oncologist how many sessions of the new chemo I would be having he didn't have an answer for me. He just said "Now you have metastatic disease". He made it sound like I would be on chemo the rest of my life.

    Kelley

    Not necessarily

    While there are many that are on chemo for life, it isn't always the case - myself being one of them. 

    I hope the new cocktail of drugs works on your tumours and you can get that surgery done.  Being in constant pain, drags the spirits down, and cannot help.  

    I cannot answer your question about chemo and pain. I hope someone else can, and give you the answers you need. 

    Wishing you the best. 

    Tru

  • KelleyTX
    KelleyTX Member Posts: 36
    Trubrit said:

    Not necessarily

    While there are many that are on chemo for life, it isn't always the case - myself being one of them. 

    I hope the new cocktail of drugs works on your tumours and you can get that surgery done.  Being in constant pain, drags the spirits down, and cannot help.  

    I cannot answer your question about chemo and pain. I hope someone else can, and give you the answers you need. 

    Wishing you the best. 

    Tru

    Thanks, Tru. I appreciate the

    Thanks, Tru. I appreciate the encouragement. I'm really trying to be a more active participant in my cancer care this time around since last time all I did was what the doctors asked me to do and I ended up with my cancer spreading instead of shrinking.

    Kelley

  • Annabelle41415
    Annabelle41415 Member Posts: 6,715 Member
    edited October 2020 #6
    Pain

    Everyone's pain tolerance and severity is different.  Mine was in the rectum as well and it was so hard for me to sit.  They gave me Protafoam, some type of foam you put up the rectum (something like that) which helped ease the pain somewhat.  I'm sorry that the pain pills aren't working.  I'd keep trying different medications and tell them it's not working.  There are many out there and they should be able to help you get some relief.  Wishing you the best.

    Kim

  • SnapDragon2
    SnapDragon2 Member Posts: 646 Member
    edited October 2020 #7
    Are the lymph nodes local?  I

    Are the lymph nodes local?  I would get a second opinion by a board certified colorectal surgeon.  

  • KelleyTX
    KelleyTX Member Posts: 36

    Are the lymph nodes local?  I

    Are the lymph nodes local?  I would get a second opinion by a board certified colorectal surgeon.  

    They are the inguinal lymph

    They are the inguinal lymph nodes so yes I think that would be considered local. From the beginning, because I have a large tumor low in the rectum, and it is considered a difficult case, my tumor has been discussed regularly at a "tumor board" so there are a lot of different physicians having input on the best course of action for my treatment. I do have a highly reputable colorectal surgeon on my case and he is the surgeon who performed  my colostomy. However, he believes that the tumor needs to shrink  before it is removed. 

     

    Kelley 

  • KelleyTX
    KelleyTX Member Posts: 36
    edited October 2020 #9

    Pain

    Everyone's pain tolerance and severity is different.  Mine was in the rectum as well and it was so hard for me to sit.  They gave me Protafoam, some type of foam you put up the rectum (something like that) which helped ease the pain somewhat.  I'm sorry that the pain pills aren't working.  I'd keep trying different medications and tell them it's not working.  There are many out there and they should be able to help you get some relief.  Wishing you the best.

    Kim

    Thanks Kim I am seeing my

    Thanks Kim I am seeing my oncologist Tuesday and we are going to discuss my pain issues.

    Kelley 

  • SnapDragon2
    SnapDragon2 Member Posts: 646 Member
    edited October 2020 #10
    That is very good for you!!! 

    That is very good for you!!!  You are in good hands.