CSN Login
Members Online: 3

You are here

Continuing story on my treatment

KelleyTX
Posts: 19
Joined: Jan 2020

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

worriedson714
Posts: 89
Joined: Dec 2019

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
Posts: 19
Joined: Jan 2020

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's picture
Trubrit
Posts: 5222
Joined: Jan 2013

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
Posts: 19
Joined: Jan 2020

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's picture
Annabelle41415
Posts: 6549
Joined: Feb 2009

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

KelleyTX
Posts: 19
Joined: Jan 2020

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

Kelley 

SnapDragon2's picture
SnapDragon2
Posts: 321
Joined: Nov 2019

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

KelleyTX
Posts: 19
Joined: Jan 2020

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 

SnapDragon2's picture
SnapDragon2
Posts: 321
Joined: Nov 2019

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

Subscribe to Comments for "Continuing story on my treatment"