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by Zod
Tue Oct 08, 2019 10:06 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Keytruda Side Effects: bad joint pain
Replies: 19
Views: 2005

Re: Keytruda Side Effects: bad joint pain

Two things: 1 The docs are presumably weighing risks (that is still a liver surgery, still invasive with some level of risk) versus the likely benefit. 2 Check with your oncodoc and/or other docs and strongly tell them about your knee symptoms if you haven't already. Good medical oncologists should ...
by Zod
Tue Oct 08, 2019 9:54 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Upcoming Surgery
Replies: 23
Views: 2175

Re: Upcoming Surgery

I also had an LAR 9 months ago and had (and somewhat still have) problems urinating. Not particularly bad but I seem to be able to void the "top half" of my bladder. E.g., if I'm full then I can void some easily but have to push/tense a lot to get much of the rest out. I'm also on Flomax p...
by Zod
Tue Oct 08, 2019 9:40 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Long flights with cancer/chemo
Replies: 15
Views: 1302

Re: Long flights with cancer/chemo

My medical oncologist is worried about clots if I fly but I have a mild clotting disorder as well.

He prescribed a blood thinner that I take before the flight.
by Zod
Tue Oct 08, 2019 9:30 pm
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: 977

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

There's no FDA approval required for getting an HAI pump anywhere. I'm told that the combination of Medtronic pump and Codman catheter is off-label and therefore needs FDA approval. Want to confirm or deny that. I expect that MSK has a "bulk approval" of some sort maybe? Or perhaps as you...
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: 1289

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: 832

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: 977

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: 384

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: 2175

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: 314

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: 173
Views: 14619

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: 38
Views: 2460

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: 377

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: 662

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.

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