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by rachelfromnyc
Wed Apr 01, 2020 12:17 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: My CRC with liver mets journey
Replies: 319
Views: 55179

Re: My CRC with liver mets journey

That’s the same test that was positive for me: the anti-CCP test. The RA screen was negative. So you may have experienced the same thing: your body mounting an immune system response to early stage colon cancer. Oh also I read that MRI would be negative for RA in a case like this. Crazy right?! But...
by rachelfromnyc
Wed Feb 26, 2020 1:09 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: No more chemo?
Replies: 51
Views: 4785

Re: No more chemo?

We FINALLY got an answer from MSK! Jesper is approved for an on-site appointment. Now we just need to figure out how to fit it in time-wise. I feel like he's been off chemo long enough! I'd rather give him a bit of FOLFIRI and then do the second opinion during a chemo break. I'll definitely let you...
by rachelfromnyc
Mon Feb 24, 2020 1:18 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: No more chemo?
Replies: 51
Views: 4785

Re: No more chemo?

Hi Alexandra, I know the scan results weren't exactly what you were looking for but a stable scan is a good scan. I started off with FOLFOX and had disease progression so was switched to FOLFIRI. I am having more issues now with side effects so my conversations with my oncologist revolve around mana...
by rachelfromnyc
Sun Jan 05, 2020 8:33 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: A Toast to 2020!
Replies: 10
Views: 981

Re: A Toast to 2020!

Thanks for sharing. I am in a bad situation myself with a poor prognosis so I love reading stuff like this. Cheers Julie :)
by rachelfromnyc
Sat Dec 28, 2019 3:03 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Liver and lung mets
Replies: 45
Views: 7214

Re: Liver and lung mets

Sorry to hear both you and Jesper have the flu but glad that it wasn't so severe for Jesper that he had to be hospitalized. I have a little experience in chemo delays while I was on FOLFOX over the summer so I thought I'd share. I had two one week delays. The first was for low counts. Before startin...
by rachelfromnyc
Wed Dec 18, 2019 6:49 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Accident with 5FU bottle
Replies: 7
Views: 1489

Re: Accident with 5FU bottle

My hospital gives you a little sling bag to put the pump in, did yours give you anything like that? Makes my pump a nonissue but I have to be careful with the tubing with 5 huge dogs and a very active 8 month old. He likes to pull on it. :shock: I have the standard issue black fanny pack. I wear it...
by rachelfromnyc
Thu Dec 12, 2019 1:25 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Accident with 5FU bottle
Replies: 7
Views: 1489

Re: Accident with 5FU bottle

Thanks everyone for sharing your experiences. Guess this thing isn’t accident proof so have to be careful next time and check the connections. It’s unfortunate because I was finally getting comfortable/confident with the bottle. The first few treatments, I felt I just had to hang out at home all day...
by rachelfromnyc
Sat Dec 07, 2019 11:23 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Accident with 5FU bottle
Replies: 7
Views: 1489

Accident with 5FU bottle

I woke up on the day of disconnecting from the bottle and went to the bathroom and blew my nose. Then I saw there was blood on the sink, my shirt and the floor (ruined my bath mats too). At first I thought it was a nosebleed as I have been having issues with that on my current treatment regimen but ...
by rachelfromnyc
Sat Dec 07, 2019 11:01 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Folfiri and Nausea
Replies: 15
Views: 2091

Re: Folfiri and Nausea

Folrifi was worse for me also. I barely had anything on Folfox. Strangely, side effects have been less severe the more infusions I get. After the last treatment, I had fatigue and slept 12 hours the night of disconnect. I do however, take anti nausea (ondansetron or prochlorperazine maleate) and ant...
by rachelfromnyc
Sat Dec 07, 2019 10:50 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: My hair is falling out.
Replies: 30
Views: 4366

Re: My hair is falling out.

As an update, I completed my fifth treatment of Folfiri this week and have noticed that the hair thinning has progressively been less and less. Don't get me wrong, it's still falling out but not to the extent as before. I did cut my hair to just above shoulder length and as Amarie noted, the longer ...
by rachelfromnyc
Sun Nov 24, 2019 10:17 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Chemotherapy options/help
Replies: 14
Views: 1286

Re: Chemotherapy options/help

I have heard of people having 5FU by itself, without any of the add ons. But I don't know the reasoning as to why it was done that way. I can tell you my experience though- I did 6 total rounds of FOLFOX. Three were at the max dose and the remaining three were at 85% of the maximum dose. They took i...
by rachelfromnyc
Tue Nov 19, 2019 2:50 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Rectal cancer (Stage 3A) diagnosed late June 2017
Replies: 1668
Views: 389003

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Hi Mike- I take probiotics daily in two doses, morning and evening. I also take digestive enzymes before meals.
by rachelfromnyc
Mon Nov 18, 2019 7:53 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: 1st bad scanning... advice please!!
Replies: 52
Views: 3950

Re: 1st bad scanning... advice please!!

Hey radnyc- if you don't mind, can you share which oncologist you saw at MSK? No pressure, just wondering. I am having the opposite experience in terms of bedside manner with my oncologist. It's always, you're doing great and you're looking great! Which I'll never be tired of hearing those things bu...
by rachelfromnyc
Mon Nov 18, 2019 5:13 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: 1st bad scanning... advice please!!
Replies: 52
Views: 3950

Re: 1st bad scanning... advice please!!

Hey Alexandra, any luck with MSK? I was at 53rd St. today for treatment and the waiting room was the most crowded I've ever seen it. I asked around and a nurse told me Dr. K is in clinic on Mondays (I usually go on a different day) and from being around here, I know she is quite popular! Sending you...
by rachelfromnyc
Mon Nov 18, 2019 5:03 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: My hair is falling out.
Replies: 30
Views: 4366

Re: My hair is falling out.

Resurrecting this thread because the hair issue is becoming more of an issue lately. Some background- I did 6 rounds of FOLFOX and had hair thinning after the 2nd infusion. No biggie, was manageable. Now I am on FOLFIRI and it's coming out a lot more. Currently on the 4th of 6 rounds but I am also i...

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