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by Rikimaroo
Tue Sep 20, 2022 9:02 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Update after 2nd opinion discussion
Replies: 24
Views: 1934

Re: Update after 2nd opinion discussion

Hello, Everyone, where too start. So after my first immunotherapy session the next day (Saturday) I needed to get a blood transfusion because I was low. Then later that night I was bleeding from my bottom again alot and honestly it most likely was mixture of blood and mucus and drainage stuff....So ...
by Rikimaroo
Sat Sep 10, 2022 6:51 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Update after 2nd opinion discussion
Replies: 24
Views: 1934

Re: Update after 2nd opinion discussion

Everyone just wanted to give an update I got my first immunotherapy yesterday and all went well no issues whatsoever Only issue I have right now is the fact that I’m bleeding through my bottom because of a tumor which most likely made a fistula will wait for the doctor to let me know we have to do a...
by Rikimaroo
Sat Sep 03, 2022 4:07 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Update after 2nd opinion discussion
Replies: 24
Views: 1934

Re: Update after 2nd opinion discussion

Thank you everyone kindly for all the lovely comments. PCCR it’s a good question to ask after I do my first PET scan with UM. We can review then any plans.

That would be great for any lung Mets I presume.

Thanks
Riki
by Rikimaroo
Fri Sep 02, 2022 11:11 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Update after 2nd opinion discussion
Replies: 24
Views: 1934

Update after 2nd opinion discussion

Hello Guys, I got some good news and I want to just ball out in tears while typing this. I have been approved for Pembrolizumab Ipiliumab Nivolumab, my tumor mutation burden has increased significantly since May and I don't know why Cleveland Clinic never checked, i just feel like they checked out o...
by Rikimaroo
Wed Aug 31, 2022 5:17 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Beginning TIL Therapy at NIH Next Week
Replies: 40
Views: 5161

Re: Beginning TIL Therapy at NIH Next Week

Glad to hear this. SOC sucks. I hope this works for you
by Rikimaroo
Tue Aug 23, 2022 1:13 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Thinking of Hospice Care
Replies: 12
Views: 2098

Re: Thinking of Hospice Care

I don't think it is because my oncologist would of brought it up, but I will ask him when I see him on 9/7.
by Rikimaroo
Tue Aug 23, 2022 11:23 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Thinking of Hospice Care
Replies: 12
Views: 2098

Re: Thinking of Hospice Care

Currently no surgical options. The plan was to do 6 rounds (did 4 so far), the good news is I do eat and gain some weight back after the chemo wears off. I do have an appetite. I also have low energy, strength so we working on getting a wheelchair even though I have no issue walking, my wife insists...
by Rikimaroo
Tue Aug 23, 2022 9:28 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Thinking of Hospice Care
Replies: 12
Views: 2098

Re: Thinking of Hospice Care

Thanks so much for the lovely inputs, I appreciate and love you all. It's so strange because these last 4 rounds of Folfiri seems to have helped a bit with the primary local tumor. I am still trying to figure things out and work with my 2nd opinion doctor and maybe get me in a trial, I don't want to...
by Rikimaroo
Mon Aug 22, 2022 5:09 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Thinking of Hospice Care
Replies: 12
Views: 2098

Thinking of Hospice Care

Hello Everyone, It's been a long journey alot of fighting and just overwall rough living. There have been good times, great times, sad times, cancer symptom times. At this point I am debating quitting chemo, my cea was 175 and just jumped up to 308, means cancer getting more resistant to the chemo. ...
by Rikimaroo
Thu Aug 11, 2022 4:57 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Chemo every 2 weeks vs 3 weeks
Replies: 9
Views: 2133

Re: Chemo every 2 weeks vs 3 weeks

Hi Beach, Basically I have been having a hard time gaining weight, cancer been really beating me up and taking some nutrients. I am doing better with eating so I am gaining some weight very slowly thought and when I get the chemo FOLFIRI eating because an issue for about 5 days sometimes 10 days whe...
by Rikimaroo
Tue Aug 09, 2022 11:51 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Chemo every 2 weeks vs 3 weeks
Replies: 9
Views: 2133

Re: Chemo every 2 weeks vs 3 weeks

CEA went down to 199, good response to therapy but man is it hard to do right now. This will be on a 3 week cycle.
by Rikimaroo
Thu Jul 21, 2022 3:53 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Increasing CEA
Replies: 34
Views: 6723

Re: Increasing CEA

That is good news. Always great to here stability, but always anxiety until the next CEA test my friend. I know how you feel, its crazy, but you know what live for the present brother, not the future.

Riki
by Rikimaroo
Thu Jul 21, 2022 3:47 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Chemo every 2 weeks vs 3 weeks
Replies: 9
Views: 2133

Re: Chemo every 2 weeks vs 3 weeks

Thanks Rob/Mad - Well said Rob...I will discuss with oncologist but that is what we are doing basically hitting it every 2 weeks to not give it options for cell repair (makes most sense to me). Things seems stable, I hope next week when I go back in CEA goes down. Right now CEA is at 264, was 261 la...
by Rikimaroo
Wed Jul 20, 2022 4:48 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: About 4 years ago...
Replies: 13
Views: 2782

Re: About 4 years ago...

Claudine wrote:Thanks Riki! Luggage supposed to be delivered any minute, phew!

Can’t say much regarding your 2 vs 3 weeks Folfiri - DH had it every two weeks I believe, we were never aware 3 was an option.


There is LOL...and if you mention he might jump all over it, and I would not blame him!!
by Rikimaroo
Wed Jul 20, 2022 1:22 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Chemo every 2 weeks vs 3 weeks
Replies: 9
Views: 2133

Chemo every 2 weeks vs 3 weeks

So the statistics is, well there really not any if getting FolFiri every 2 weeks vs 3 weeks makes any impact to progression. Does anyone else have any ideas/recommendations. Right now I am going back on a 2 week schedule basically to attack the cancer as aggressive as possible, but honestly I don't ...

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