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...

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...

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 ...

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...

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...

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 ...

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...

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...

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 ...

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...

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.

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...

Really sorry to hear your news, Mohrfamily. Sending you good energy... you're in my thoughts.

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...

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...