The Colon Club

On pembro clinical trial since 11/15. Seems that it has stopped working. Stayed away from board because it is so hard to read about people who I met on board since 2012 are gone. Struggling mentally and emotionally. Will ask onc about next steps given growth of lymph node tumors. Depressed thinking I may need to go back to traditional chemo regimens and/or let's see what works regimens.

T

Hi tchan8888,

We never interacted but I just want to say I am sorry to hear about your tough situation. The ups and downs are difficult. Is there no option other than chemo?

Hang in there and keep up the fight. Don't lose hope.

Good to see you posting . I am sorry it's stopped working and hope you have a different treatment option other than chemo. You have done so well enduring all that treatment and totally understand it's hard when people pass you have connected to. We are still here to support you though.
Take care,
Stu

Tom,

Good to see you again, although sorry to hear of the roller coaster. There have been so many new immuno combos that have come out in the past year, I am sure there is another non-chemo option out there. Check DK37's curated clinical trials list, also on Maia's signature.

Tom
Good to see you and I have tried searching for you and your blog, to see how you were doing but could not find you.
I am glad to hear that you are still here, but can completely understand that you are now facing a difficult situation.
OK, I guess exercise is not on your list of priorities at the moment, but you always were an avid gourmet. What and where have you been recently?
I have not had Ramen since my diagnosis, but my wife loves Ramen, and there is a new ramen bar that has opened up around the corner. I went there yesterday with her for lunch and I must admit I had some serious food envoy as I was eating Tofu Salad, and she was eating Tonkotsu Ramen (they only make 10 per day).
I am glad you posted Tom.
Kiwi (I graduated from the school of 2012 as well)

I'm sorry that the trial stopped working.*hugs*

Great to see you back! Hope you're still livin' large. I've been holding on and slowly getting worse myself. I hope you'll find another trial that works, or a tolerable maintenance regimen.

Old timers of the world, unite!

All best, jdepp

Tom -
It was so nice to see your post. I have been thinking about you lately and wondering how you are doing.

However, I'm sorry to hear that your Keytruda® (pembrolizumab) trial seems to have stopped working. How many cycles have you had so far -- around 25? How many quarterly follow-up scans have you had so far -- around 6? And when did they first start noticing a diminished response?

According to the protocol, you can have up to 35 cycles (about 2 years) of treatment, so they could conceivably continue treatment until this November. But are you saying that they might be stopping your participation before the 35th cycle? If so, I hope they can line up another trial appropriate for MSI-H patients in your situation.

Apparently no preliminary results have been posted for your trial so far, but I was wondering if your oncologist might have some informal comments on how other patients in the trial have been doing. Does it look like Keytruda® might hold promise for eventual approval in the case of colorectal cancer? Right now, Keytruda® is an approved treatment and is stocked in hospital pharmacies, but it is only officially approved for use with four indications -- advanced melanoma, advanced non small-cell lung cancer, head and neck squamous cell cancer, and Hodgkin lymphoma. I know there are some people here who are eagerly awaiting the results of the Keytruda® trial with colorectal cancer.

Tom,

Glad to see you post. You don't know me but I am an avid 'back reader' of these boards and as a fellow Lymph node met's type I have read most of your posts.

I'm sorry for the difficulty with seeing people pass on the boards, and I have to admit having watery eyes reading some posts from up to 10 years ago myself.

However, I must tell you for a new person like me, reading fresh posts from long term survivors like you (and Jdepp) gives a boost of hope and some inspiration to educate myself even more from past postings.

I'm sorry to hear you seem to have had growth, immunotherapy can sometimes work in strange ways and I hope your next treatment proves effective.

Thanks for coming back to the board.

AT

I am sorry you find yourself here again.

I hope your onc can help you sort this out.

Prayers for you, and good wishes.