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by juliej
Tue May 21, 2019 6:22 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Avastin itch and rash
Replies: 3
Views: 104

Re: Avastin itch and rash

Oral and topical Benadryl should help. Check with your oncologist first to make sure it's okay to take the oral version though. Another thing you might try is CareVe Itch Relief Lotion. It has an anti-itch ingredient, Pramoxine Hydrochloride, which helps people with eczema who can't stop scratching....
by juliej
Tue May 21, 2019 6:12 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: CEA
Replies: 4
Views: 409

Re: CEA

So DH has been fighting are for 1 full year. His CEA was the highest (unreadable) a 30 year veteran nurse had ever seen. After a few months that number dropped and dropped. Its lowest has been in the 50s he's back up in the 90s and I keep trying to tell myself its because he was forced to take a br...
by juliej
Thu May 02, 2019 6:45 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Neuropathy improvement: individual experience
Replies: 20
Views: 1221

Re: Neuropathy improvement: individual experience

I am like several others above who definitely don’t have a normal feeling in their feet, but it also doesn’t keep me from walking and running and no balance issues, but damn it is annoying when I go to bed at night and I just feel the “oddness” of it... Agree! I am several years out and while the n...
by juliej
Thu May 02, 2019 6:35 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Should we move the scan up?
Replies: 9
Views: 733

Re: Should we move the scan up?

Both benign (harmless) and malignant (cancerous) conditions can increase the CEA level, so that's something to keep in mind when you have a slow rise like this one. Has she had an infection lately? A cold or a flu? I think a one month delay for the CT scan is fine since the changes are minor. If the...
by juliej
Wed Apr 24, 2019 7:25 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Stage IV, what happens after surgery?
Replies: 21
Views: 1094

Re: Stage IV, what happens after surgery?

There are also so many other options regarding tumor biology, immunotherapies, personalized oncogenomics etc. available NOW perhaps they have found full on classical chemo is not warranted in some cases. Have that discussion with your docs and push HARD for some meaningful answers or consider anoth...
by juliej
Wed Apr 24, 2019 7:08 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Good News!
Replies: 7
Views: 677

Re: Good News!

Clear margins, zero lymph node involvement - what's not to like?! :D

Congratulations! And thanks for sharing your good news!

Juliej
by juliej
Tue Apr 23, 2019 6:13 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Update on supplements with some history
Replies: 39
Views: 2710

Re: Update on supplements with some history

kandj wrote:. edited I will choose to be kind and not rude. Have a great day.

You just earned some karma points!!! :D :D :D

Thanks for taking the high road.

Juliej
by juliej
Tue Apr 23, 2019 6:04 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: My CRC with liver mets journey
Replies: 116
Views: 15571

Re: My CRC with liver mets journey

I need to get better at letting him know where I am emotionally, so when I'm in a bad place, he doesn't make the mistake of sending me photos via text of the amazing dinner he's having at Nobu Malibu or whatever! NOT HELPFUL Yes, you definitely need to be able to tell him where you're at emotionall...
by juliej
Tue Apr 23, 2019 5:24 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Update on supplements with some history
Replies: 39
Views: 2710

Re: Update on supplements with some history

See this exchange makes me nervous about continuing supplements without MSK's approval. To be 100% honest, I had sort of been playing around with the idea of doing supplements during my "off" pump weeks, and just not saying anything. I really do believe that they made a difference in my i...
by juliej
Tue Apr 23, 2019 5:13 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Reversals Any positives?
Replies: 31
Views: 1655

Re: Reversals Any positives?

Thanks for keeping it positive. It’s strange so far day time nothing happens but after dinner and then is we hours, bam it’s toilet time. I no sooner pull up my drawers and have to pull them down again and sit. Just the beginning I know. I swear my intestines waited until bedtime so they could be t...
by juliej
Tue Apr 23, 2019 5:02 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Update on supplements with some history
Replies: 39
Views: 2710

Re: Update on supplements with some history

I took curcumin (LEF's Bio-Curcumin, which contains BCM-95) while I was receiving chemo in my HAI pump. However, I saw an integrative medicine doc at MSK who coordinated with my oncology team. I figured oncologists, surgeons, radiologists, etc. all have their own specialties (and limited view of pat...
by juliej
Mon Apr 22, 2019 6:12 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: HAI Pump Flow Problem
Replies: 2
Views: 332

Re: HAI Pump Flow Problem

I posted this over on the fb group for HAI pumps and thought I'd ask here as well. We meet w Dr. D'Angelica at MSK (liver surgeon) last Monday (along w Kemeny and Paty) and were planning on the HAI pump. Unfortunately, my wife's anatomy is creating a problem. High level; the right side of the liver...
by juliej
Mon Apr 22, 2019 6:03 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: First CT results are in..
Replies: 13
Views: 877

Re: First CT results are in..

I still only have the one met in my liver!!! Chest is clear, nothing new in my abdomen, pelvis is clear. This was the first CT I've had since diagnosis. This is fantastic and amazing news! I am so happy for you! :D :D :D And, yes, let the drugs do their job. Then let the surgeon do his. Your job is...
by juliej
Mon Apr 22, 2019 5:54 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Reversals Any positives?
Replies: 31
Views: 1655

Re: Reversals Any positives?

JulieJ, you somewhat answered this, but are these going to be lifetime issues, or do things generally get close to normal over time? Cancer's taken so much already, the thought of also losing some of my favorite foods is a bit depressing. I think it varies widely from person to person. Some people ...
by juliej
Thu Apr 18, 2019 5:43 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Reversals Any positives?
Replies: 31
Views: 1655

Re: Reversals Any positives?

It took me a full 3 months to get back to normal (well, my "new normal"). As others have noted, the first few months are the hardest. Your plumbing has been "offline" for awhile so it takes some time for it to get used to processing food. I was beyond thrilled when I produced my ...

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