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by Zod
Mon Sep 30, 2019 4:56 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Vectibix side effects
Replies: 13
Views: 1738

Re: Vectibix side effects

I did some googling which is usually a bad idea

"Google is a good mortician but a bad doctor." - FWIW
by Zod
Mon Sep 30, 2019 4:41 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Vision & chemo
Replies: 6
Views: 1162

Re: Vision & chemo

I see that blurry vision can be a side effect from the steroids or chemo. Has any one had it only happen in just 1 eye? Same thing with me (one eye, during chemo) but is was age-related vitreous detachment at age 62. That is worth taking to an eye doctor since sometimes can be something more than t...
by Zod
Sun Sep 29, 2019 12:22 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: How long does MSK take to get approval to install HAI pump?
Replies: 10
Views: 1591

How long does MSK take to get approval to install HAI pump?

How long does MSK take to get approval to install HAI pump? Are they able to get whatever approvals are needed quickly once they decide to use the pump on a particular patient? My understanding is that there can be a 1-2 month wait to sort out paperwork with FDA if getting a HAI pump elsewhere. Wond...
by Zod
Wed Sep 18, 2019 9:41 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Pump Placement
Replies: 5
Views: 615

Re: Pump Placement

I don't have much info about timing, etc. However, in my case docs are talking about combining the pump install with my other 2 operations (liver resection and reversing ileostomy. Do you have other operations that should be combined with installing the pump?
by Zod
Sun Sep 15, 2019 8:28 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Upcoming Surgery
Replies: 23
Views: 3122

Re: Upcoming Surgery

Here are some things I've done to make life with a (hopefully temporary) ileostomy better. 1 I'll call my WOC nurse if I have questions or problems. She has been super-helpful. Also visited her one time a few weeks after surgery to sort stuff out. 2 The vendor for my bags has a help line you can cal...
by Zod
Wed Sep 11, 2019 4:45 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Folfox7 vs folfox6
Replies: 1
Views: 486

Re: Folfox7 vs folfox6

Does it make a huge difference? Should he be put back on the 7 for his 3rd infusion and then on ? My oncologist had to switch my drugs around after my first infusion due to neutrophils getting too low. New mix (done for 3rd and 4th) seems to be OK for neutrophils and fortunately no too-harsh side e...
by Zod
Wed Sep 11, 2019 4:40 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Newly diagnosed rectal cancer
Replies: 218
Views: 24259

Re: Newly diagnosed rectal cancer

I sent my oncologist a message on the patient portal yesterday morning but no one replied so maybe that is not the way to go with that doctor My various does differ a lot for how to contact them: 1 Portal message 2 Instant (phone) message 3 Email 4 Variations on calling nurse during day and on-call...
by Zod
Wed Sep 11, 2019 4:35 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Diagnosed while working abroad
Replies: 50
Views: 5982

Re: Diagnosed while working abroad

Grapefruit interferes with how you liver breaks down certain medications and therefore can increase the accumulated concentration of those medications in your body. My medical team says my meds (folfoxiri plus some ancillary meds) are not affected by this but I'm avoiding grapefruit anyway. https://...
by Zod
Wed Sep 11, 2019 4:10 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Severe Constipation Concerned
Replies: 3
Views: 589

Re: Severe Constipation Concerned

Get thee to your doctor or oncologist.
by Zod
Fri Sep 06, 2019 12:35 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Best clinical trial(s) - stage 4 w liver mets
Replies: 9
Views: 1060

Re: Best clinical trial(s) - stage 4 w liver mets

Rob,

Can you point me at some social media groups that look at finding clinical trials? I can analyze the technical aspects of the trials but there are so many it's hard to cut through to the important stuff.
by Zod
Thu Sep 05, 2019 8:05 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Best clinical trial(s) - stage 4 w liver mets
Replies: 9
Views: 1060

Re: Best clinical trial(s) - stage 4 w liver mets

I'll ask my oncologist about that. Meet with him right after the next scan (first scan after starting folfoxiri) in 1 1/2 weeks.
by Zod
Wed Sep 04, 2019 5:39 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Best clinical trial(s) - stage 4 w liver mets
Replies: 9
Views: 1060

Best clinical trial(s) - stage 4 w liver mets

Can somebody recommend how to find best relevant clinical trials for my situation? Stage 4 with liver mets, microsatellite stable do no PD-L1, don't seem to have any of the "good" mutations that allow specialized immunotherapy or similar treatments to be used (one genetic test still in pro...
by Zod
Tue Sep 03, 2019 1:21 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Leucovorin reduced dose impact ?
Replies: 3
Views: 499

Re: Leucovorin reduced dose impact ?

It appears to be in shortage per FDA. I don't know if this affects other countries than US.
https://www.accessdata.fda.gov/scripts/drugshortages/
by Zod
Tue Sep 03, 2019 1:17 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Bladder retention after major surgery
Replies: 9
Views: 1132

Re: Bladder retention after major surgery

Similar issues for me after my surgery 6 months ago. Seemed like I was working in the "top half" of my bladder unless I pushed extra hard for a long time. I was always able to get bladder mostly empty if I spent long enough pushing. I assume that I have nerve and/or muscle damage that mess...
by Zod
Wed Aug 28, 2019 3:12 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Did anyone ever decide to go back to ileostomy after reversal
Replies: 34
Views: 6094

Re: Did anyone ever decide to go back to ileostomy after reversal

Can you get a third opinion on whether the surgery is needed?

Also, can't tell if you took the second opinion (and their findings) back to the first? Try that as well?

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