The Colon Club

henry123 wrote:Hello
Since you are msi-H , please explore immunotherapy options .
And if you can afford go in for Nivolumab or Keytruda off plan while awaiting for approval in Canada.
If not able to get local approval, consider overseas options.
Best wishes.

Stewsbetty wrote:

henry123 wrote:Hello
Since you are msi-H , please explore immunotherapy options .
And if you can afford go in for Nivolumab or Keytruda off plan while awaiting for approval in Canada.
If not able to get local approval, consider overseas options.
Best wishes.

Hi Henry,

Thanks for the advice. I know it has been a month since you wrote but I haven’t been in for awhile. I did arrange to get Keytruda off label after the folfiri filed. I just had my 3rd treatment. Midway through the second treatment I noticed my neck tumour shrinking. My persistent cough disappeared. My abdominal tumour became harder to feel. It is a miracle. I had been preparing funeral instructions and getting all the paperwork sorted out for my husband to. Now I am feeling so good and I expect to live a considerable length of time now.

Living with hope,
Beth

Stewsbetty wrote:

henry123 wrote:Hello
Since you are msi-H , please explore immunotherapy options .
And if you can afford go in for Nivolumab or Keytruda off plan while awaiting for approval in Canada.
If not able to get local approval, consider overseas options.
Best wishes.

Hi Henry,

Thanks for the advice. I know it has been a month since you wrote but I haven’t been in for awhile. I did arrange to get Keytruda off label after the folfiri filed. I just had my 3rd treatment. Midway through the second treatment I noticed my neck tumour shrinking. My persistent cough disappeared. My abdominal tumour became harder to feel. It is a miracle. I had been preparing funeral instructions and getting all the paperwork sorted out for my husband to. Now I am feeling so good and I expect to live a considerable length of time now.

Living with hope,
Beth

Stewsbetty wrote:

henry123 wrote:Hello
Since you are msi-H , please explore immunotherapy options .
And if you can afford go in for Nivolumab or Keytruda off plan while awaiting for approval in Canada.
If not able to get local approval, consider overseas options.
Best wishes.

Hi Henry,

Thanks for the advice. I know it has been a month since you wrote but I haven’t been in for awhile. I did arrange to get Keytruda off label after the folfiri filed. I just had my 3rd treatment. Midway through the second treatment I noticed my neck tumour shrinking. My persistent cough disappeared. My abdominal tumour became harder to feel. It is a miracle. I had been preparing funeral instructions and getting all the paperwork sorted out for my husband to. Now I am feeling so good and I expect to live a considerable length of time now.

Living with hope,
Beth

henry123 wrote:

Stewsbetty wrote:

henry123 wrote:Hello
Since you are msi-H , please explore immunotherapy options .
And if you can afford go in for Nivolumab or Keytruda off plan while awaiting for approval in Canada.
If not able to get local approval, consider overseas options.
Best wishes.

Hi Henry,

Thanks for the advice. I know it has been a month since you wrote but I haven’t been in for awhile. I did arrange to get Keytruda off label after the folfiri filed. I just had my 3rd treatment. Midway through the second treatment I noticed my neck tumour shrinking. My persistent cough disappeared. My abdominal tumour became harder to feel. It is a miracle. I had been preparing funeral instructions and getting all the paperwork sorted out for my husband to. Now I am feeling so good and I expect to live a considerable length of time now.

Living with hope,
Beth

Congrats.
So happy to read that your are fully responding to keytruda. I was doing the same 6 months ago ( preparing to move on). But now it seems immunotherapy is working for me too.
If your body allows do some light exercises like yoga .
Also consider vegan diet. Whatever helps.

Stewsbetty wrote:I have been attending an exercise class for cancer patients and survivors. It has been so awesome! There is no pressure to keep up with super athletes and we can all relate and encourage each other. Our instructor (a survivor herself) modifies the exercises for any of us that have limitations.
Not quite ready to go vegetarian or vegan but am working to add in more fruits and veggies and less processed foods.
I am sure looking forward to 6 month scans and hope they show as much progress as yours!

henry123 wrote:

Stewsbetty wrote:I have been attending an exercise class for cancer patients and survivors. It has been so awesome! There is no pressure to keep up with super athletes and we can all relate and encourage each other. Our instructor (a survivor herself) modifies the exercises for any of us that have limitations.
Not quite ready to go vegetarian or vegan but am working to add in more fruits and veggies and less processed foods.
I am sure looking forward to 6 month scans and hope they show as much progress as yours!

Hi Beth,
How are things at your end?
Hope all good.
Henry

Stewsbetty wrote:

henry123 wrote:

Stewsbetty wrote:I have been attending an exercise class for cancer patients and survivors. It has been so awesome! There is no pressure to keep up with super athletes and we can all relate and encourage each other. Our instructor (a survivor herself) modifies the exercises for any of us that have limitations.
Not quite ready to go vegetarian or vegan but am working to add in more fruits and veggies and less processed foods.
I am sure looking forward to 6 month scans and hope they show as much progress as yours!

Hi Beth,
How are things at your end?
Hope all good.
Henry

Thanks for checking in. I had a bit of a rough go for a couple of weeks last month with a partial obstruction. It brought back all the memories and worries of diagnosis. But thankfully one of the CRC community mentioned my symptoms seemed like a blockage. This brought me a lot of mental/emotional relief and then 2 weeks of a liquid/soft foods diet helped things to clear.

Back to feeling pretty good now. I thought I was supposed to get a CT at the beginning of May but the dr hasn’t set it up yet. She wants to just stay the course of Keytruda until September when my generous gift from Merck is up.
I do believe that I have healed now though I continue to have one small stable node that is slightly above average.

How have you been doing? I think you were just reaching your 2 year mark. Have you stayed on or are you taking some time away from treatment?

Beth

Stewsbetty wrote:Hey all,

I am going to tell some of my story and gripe and vent a bit. This is hard to do with friends and family sometimes because I don't want to lay a heavier burden on them.

I was diagnosed June 2016 and had a right hemicolectomy. I was staged 3b or 3c (I have 2 different reports one saying 6 of 10 LN positive and 1 saying 10 of 16). I followed prescribed treatments Folfox 12 rounds and kind of expected to hear the "good job and you're done" at the end. I didn't get that - just sent for a PET to check on a LN that they were watching throughout treatment. On Feb 28 it was measuring 13mm. It was cancerous. Oncologist recommended surgery (beginning of May). Didn't get to see surgeon until the end of June. He said to plan for surgery at the end of August (mentioned the slow growing nature of CC). I had a CT mid July and that LN has grown to a mass of 7x7x5cm and there is spread to several more LNs. Today I got a call that there is a fistula between the tumour and the duodenum. No idea what the plan will be going forward from this. My oncologist is presenting my case to the provincial tumour board in 10 days. Meanwhile I am living in limbo again except now I know how quickly this bloody thing is growing. And I don't know what effects this fistula will have.

Pretty much sick of this cancer business! I think as humans we like to think if we follow the rules that things work out. I did the chemo but it didn't do its job! So there's my rant and if any of you have any idea what this fistula might do or any guesses on possible treatment I would love to hear them.

Thanks, Beth