Search found 59 matches

Go to advanced search

by rachelfromnyc
Tue Nov 17, 2020 9:27 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Surgery or no?
Replies: 23
Views: 5737

Re: Surgery or no?

Thanks everyone for your responses and encouragement. I've heard about the Joe Tippens protocol and will put it on the list to research more in depth. In the meantime, I'm already at Sloan Kettering but I'm finding I learn more from this board and its members. For example, I had to ask for my surgic...
by rachelfromnyc
Mon Nov 16, 2020 9:36 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Surgery or no?
Replies: 23
Views: 5737

Re: Surgery or no?

Good news/bad news update. So the good is I had my surgery and the primary tumor was removed. There were too many lymph nodes involved and surgeon thought it was too risky to go for them all based on location so he only took out those that were accessible and may give me issues in the future. I reco...
by rachelfromnyc
Tue Oct 13, 2020 12:09 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Total Pelvic Exenteration
Replies: 11
Views: 2121

Re: Total Pelvic Exenteration

I have read about this procedure and it is extremely difficult. So thank you for sharing. I’m 1.5 years into a stage 4 diagnosis and it’s really testing my limits. Reading your experience along with Lee’s and Cynthia’s and others here... it’s really incredible. Kudos to you for starting an exercise ...
by rachelfromnyc
Mon Oct 12, 2020 11:59 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: My wheels haven't stopped turning...
Replies: 10
Views: 2270

Re: My wheels haven't stopped turning...

I can relate to the CEA stress. My numbers aren't the same magnitude but I've read that the trend may be more important than the value. My CEA was 12 at diagnosis then dropped immediately after starting chemo and it was in the "normal" range for a bit. Then it started creeping up and up an...
by rachelfromnyc
Mon Oct 12, 2020 11:38 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: After a year of FOLFOX, switching to FOLFIRI - hope to get to resecting liver
Replies: 14
Views: 1839

Re: After a year of FOLFOX, switching to FOLFIRI - hope to get to resecting liver

I have and continue to have good results with Folfiri. Folfox was my first line but after three months on it and six infusions, two new tumors in the liver popped up. Because it was progression, I switched to Folfiri and Avastin. It took another six months for my liver to be clear but it remains cle...
by rachelfromnyc
Mon Oct 12, 2020 11:31 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: New stage 4 colon cancer diagnosis
Replies: 25
Views: 4965

Re: New stage 4 colon cancer diagnosis

Your husband and I sound pretty similar. In terms of care, I started out at Lenox Hill then NYU then transferred to Sloan Kettering once it was confirmed that it was stage 4. I'm looking through my files to answer your question about genetic testing. Mine was done at MSK and it took 7 business days ...
by rachelfromnyc
Sun Oct 04, 2020 12:54 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Am I panicking for no reason? Slight rise in CEA levels
Replies: 13
Views: 2889

Re: Am I panicking for no reason? Slight rise in CEA levels

Also, I had a rise in my CEA level from 0.9 to 1.4. Should I be worried about the rise of my CEA level? Someone that I know told me the CEA test is not a reliable tumor marker. Is this true? It is true that CEA is not a reliable tumor marker for everyone. It is for some but not for others. CEA is a...
by rachelfromnyc
Sun Oct 04, 2020 12:40 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Finally consults in the works
Replies: 9
Views: 2756

Re: Finally consults in the works

I'm wondering if anyone here has had a consult or is a patient of Dr. Raymond Chang (Meridian Medical Group). I have a consult with him and just wondering if anyone has any tips on how he is . I consulted with Dr. Chang last year, his practice is in midtown Manhattan. This was pretty early in my di...
by rachelfromnyc
Sun Oct 04, 2020 12:20 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Stage 1 to Stage 4
Replies: 11
Views: 2263

Re: Stage 1 to Stage 4

Sharing my experience. When I was diagnosed, I had mets to my lungs and lymph nodes. From June to September, I did 6 rounds of Folfox after which I was scanned and they saw two new spots in my liver. I was surprised since my orginal CT scan and PET scan showed nothing in the liver. When I asked, my ...
by rachelfromnyc
Sun Oct 04, 2020 11:55 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Surgery or no?
Replies: 23
Views: 5737

Re: Surgery or no?

There are many team Rachel supporters :) I've been getting lots of help up to this point. My favorite is getting help with changing sheets as changing the duvet is one of my least favorite chores. My parents retired last year and are in Florida and won't be here until Thanksgiving. However my brothe...
by rachelfromnyc
Tue Sep 29, 2020 9:20 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Surgery or no?
Replies: 23
Views: 5737

Re: Surgery or no?

Beach sunrise- thanks so much for your encouragement!! That's nice that you had great nurses to care for you and it's so great you got them lunch! I didn't ask for a recommendation from the CR surgeon but that is my next mission.
by rachelfromnyc
Mon Sep 28, 2020 8:19 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Surgery or no?
Replies: 23
Views: 5737

Re: Surgery or no?

Had a bit of a change in plan in that the surgeon said I'm to be off chemo until surgery but when I talked to my oncologist a few days later, she wanted me to do one more round. So that was last Friday. Going into surgery I will be off chemo for three weeks and off avastin for nine weeks. I'm so tir...
by rachelfromnyc
Sun Sep 20, 2020 9:43 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Blood clots and low oxygen and hospice OH MY
Replies: 44
Views: 7255

Re: Blood clots and low oxygen and hospice OH MY

Really sorry to hear your news, Mohrfamily. Sending you good energy... you're in my thoughts.
by rachelfromnyc
Sat Sep 19, 2020 2:29 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Surgery or no?
Replies: 23
Views: 5737

Re: Surgery or no?

I had the consult and it's a go with the surgery! I'm so glad, I've wanted this thing out of me since diagnosis. Now over one year and two consecutive stable scans later, I'm finally able to get the primary out. It will be an open surgery in which the surgeon will take out anything else he sees as c...
by rachelfromnyc
Fri Sep 11, 2020 11:46 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Surgery or no?
Replies: 23
Views: 5737

Re: Surgery or no?

Hi Lee and beach sunrise, thanks for your response. The surgeon I'm seeing next week is board certified so I feel good about that. To expand a bit on chemo for life, I have a lot of lymph node/distant lymph node involvement. The ones in my neck were biopsied and found positive. None in other locatio...

Go to advanced search