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by Fluff Bottom
Fri Jan 31, 2020 11:02 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Peritoneal recurrence
Replies: 3
Views: 1639

Re: Peritoneal recurrence

Had been NED for over 19 months after HIPEC and several rounds of FOLFIRI, then several sweet months of no chemo. Unfortunately, a diagnostic laparoscopy just confirmed its back and all over the peritoneal cavity. There is too much for surgery, so now it's back to systemic therapy for me to buy a l...
by Fluff Bottom
Tue Dec 03, 2019 7:10 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Folfiri and Nausea
Replies: 15
Views: 3162

Re: Folfiri and Nausea

My memory isn’t what it used to be but it seems like the nausea was less predictable for me than on FOLFOX. I was only on it a few months before it stopped working.

Sorry I can’t remember more details.
by Fluff Bottom
Tue Dec 03, 2019 5:15 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Folfiri and Nausea
Replies: 15
Views: 3162

Re: Folfiri and Nausea

Hi Tater, when I was on FOLFIRI I had a time with nausea. Please check with your oncologist first but Nauzene and Emetrol helped me more than any prescription meds did. They are both over the counter. You can buy them on Amazon or Walmart. My Walmart was out of stock regularly though. Hope you are a...
by Fluff Bottom
Mon Oct 28, 2019 12:26 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Opdivo Infusion Scheduling
Replies: 1
Views: 705

Opdivo Infusion Scheduling

I will be starting Opdivo/Stivarga soon and I am trying to plan the best day for my infusion so I can still work. While on FOLFOX I had the infusion on Wednesday, felt ok on Thursday and Friday then had the weekend to recover.

Does anyone have experience with these drugs?

Thanks!
by Fluff Bottom
Thu May 30, 2019 9:13 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Totally in Shock Stage 2 to Stage 4 in 9 Months
Replies: 25
Views: 6088

Re: Totally in Shock Stage 2 to Stage 4 in 9 Months

FOLFOX is tough but doable. I worked full time the whole 7 months or so that I was on it. Taking the pump home was annoying but it’s only for 2 days. I would guess that the majority of the folks on here have done FOLFOX at one time or another. There are tons of posts about dealing with the side effe...
by Fluff Bottom
Wed May 29, 2019 6:20 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Totally in Shock Stage 2 to Stage 4 in 9 Months
Replies: 25
Views: 6088

Re: Totally in Shock Stage 2 to Stage 4 in 9 Months

Hang in there girl! Maybe search for some positive stories on all the Stage 4 people who are surviving and thriving. You’d be amazed at how many there are. I don’t blame you for being scared, I’m scared sometimes too. We are all in this mess together! There are so many smart, compassionate people on...
by Fluff Bottom
Wed May 29, 2019 5:24 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Totally in Shock Stage 2 to Stage 4 in 9 Months
Replies: 25
Views: 6088

Re: Totally in Shock Stage 2 to Stage 4 in 9 Months

Gloria, I definitely had less pain when the chemo was working. Once it stopped, the pain came back it seems like in just a few weeks. I start the infusion portion of my new treatment tomorrow. I’m doing Tafinlar+Mekinist+Vectibix. I hope you can get some answers from the tumor board. Please keep us ...
by Fluff Bottom
Tue May 28, 2019 10:36 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Tafinlar, Mekinist and Vectibix
Replies: 11
Views: 1542

Re: Tafinlar, Mekinist and Vectibix

I’m not involved in a trial either. Just got lucky with the timing and insurance approved it.
by Fluff Bottom
Sun May 26, 2019 7:28 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Totally in Shock Stage 2 to Stage 4 in 9 Months
Replies: 25
Views: 6088

Re: Totally in Shock Stage 2 to Stage 4 in 9 Months

Gloria, last May I had my yearly CT and it was all clear. In July I started having abdominal pain that I thought was a hernia. It ended up being new cancer on lungs, liver and peritoneum in only a couple of months. Went from Stage 3b to 4c. Back on chemo and was stable until two weeks ago when thing...
by Fluff Bottom
Sun May 26, 2019 7:11 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Tafinlar, Mekinist and Vectibix
Replies: 11
Views: 1542

Re: Tafinlar, Mekinist and Vectibix

Hopeful, I’m not sure why a doctor would choose Erbitux or Vectibix. I have my first infusion this coming Thursday. I got the pills this past week and was told to go ahead and start taking them. So far no horrible side effects, just a headache, nausea and a little fatigue. Not looking forward to dea...
by Fluff Bottom
Thu May 23, 2019 10:05 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Tafinlar, Mekinist and Vectibix
Replies: 11
Views: 1542

Re: Tafinlar, Mekinist and Vectibix

Hi Rob, I have the BRAF V600e mutation. I have to redo my signature, I ran out of room lol.
by Fluff Bottom
Thu May 23, 2019 3:18 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Tafinlar, Mekinist and Vectibix
Replies: 11
Views: 1542

Tafinlar, Mekinist and Vectibix

I will be starting on these soon because Folfiri + Avastin stopped working after only a few months. Scan showed growth in existing mets and new ones since March. Anyone else currently doing the triplet Tafinlar, Mekinist, Vectibix?
by Fluff Bottom
Wed Apr 03, 2019 5:17 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Disconnect & folfiri questions
Replies: 11
Views: 1481

Re: Disconnect & folfiri questions

When I leave on chemo day the tell me to come back in about 46 hours. I leave work and head to the infusion center 30 minutes or so after it starts showing “low” on my pump.
by Fluff Bottom
Sun Feb 24, 2019 6:11 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: CA 19-9
Replies: 2
Views: 909

Re: CA 19-9

RP1954, thank you so much for your reply. Your unbelievable knowledge and the fact that you take the time to share it with this board is appreciated more than you will ever know. Your wife is so lucky to have you in her corner! I’m trying to get my act together and look at my blood work like you men...
by Fluff Bottom
Wed Feb 20, 2019 3:36 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: CA 19-9
Replies: 2
Views: 909

CA 19-9

Happy Wednesday everyone! My CA 19-9 is tested monthly. It was originally 180, then 60 after a few rounds of chemo. Now it’s jumped to 92(over 35 is high). I have my scans on March 4th and will find out if things are stable or growing. In the meantime I was just wondering if you watch CA 19-9 for a ...

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