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by juliej
Fri Aug 28, 2020 3:56 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Strange question for the group
Replies: 5
Views: 594

Re: Strange question for the group

Hello everyone, It's been quite the strange year, not even counting the pandemic. I was diagnosed in January of this year, have gone through a couple surgeries (they got it and the pathology reports came back negative!!), 11 rounds of chemo (1 more left!!), and finally feel like I can see the finis...
by juliej
Tue Aug 25, 2020 5:07 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Scanxiety and 2020
Replies: 11
Views: 1656

Re: Scanxiety and 2020

John just got back from his appointment, the paperwork says no evidence of metastatic disease! I'm so relieved! Though there was a line on the report that I'm confused about, I wasn't sure if anyone has come across this before? "A few tiny sub-5mm pulmonary nodules are likely unchanged, primar...
by juliej
Fri Aug 21, 2020 4:23 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: One year into cancer battle
Replies: 12
Views: 2746

Re: One year into cancer battle

You had me at "lemon lavender cupcakes" :D :D :D How can a girl get ahold of some of those??? Will you be opening a bakery soon??? It sounds like you are doing what needs to be done. Be strong. Be proactive. It can seem like a long haul at times, but that's why they call it a marathon and ...
by juliej
Fri Aug 21, 2020 4:11 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: My CRC with liver mets journey
Replies: 362
Views: 82203

Re: My CRC with liver mets journey

My oncologist here says she hopes I might be operable if the PET looks good - and said if it were her she would drive to NY for the surgery. First - let me react to the good news! YAHOO!!! Praying you're headed to NYC for the surgery soon! And my husband’s partner of 20 years and the best man at ou...
by juliej
Wed Aug 12, 2020 6:08 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: another HAI pump question and a short rant...
Replies: 15
Views: 2293

Re: another HAI pump question and a short rant...

AND don’t take pump advice from a center that doesn’t embrace them WORD!!!! I had tumors in all lobes of my liver and got the pump and it was VERY effective for me! His onc obviously doesn't know anything about it. I'm glad you're being proactive about this. Who cares what she or her practice think...
by juliej
Wed Aug 12, 2020 5:59 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Avastin - painful skin after two years
Replies: 5
Views: 1192

Re: Avastin - painful skin after two years

I feel for your mom. I was on that combo for about 2 years so I know what it does to your skin. The problem isn't the Avastin; it's the Xeloda. It causes a condition called "hand-foot syndrome" (HFS), which is very painful. My hands and feet were red and swollen and even my toenails came o...
by juliej
Fri Aug 07, 2020 1:54 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: How to go about getting 2nd opinion or advice
Replies: 2
Views: 433

Re: How to go about getting 2nd opinion or advice

This is when you call in the Big Guns - the docs at top-rated cancer centers know best how to deal with difficult situations like fibroids and scar tissue!!! Ask your surgeon for a referral to Memorial Sloan Kettering in NYC. That's where I went when my local oncologist said my case was "too co...
by juliej
Fri Aug 07, 2020 1:41 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: When to do the HAI Pump?
Replies: 4
Views: 833

Re: When to do the HAI Pump?

An HAI Pump can be used for both purposes - to get liver tumors reduced in size/number enough for a patient to be able to have surgery OR after surgery to lessen the chance of a recurrence. (Approximately 50% to 75% of patients develop a recurrence of the disease within two years after a liver resec...
by juliej
Thu Apr 16, 2020 4:33 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Scary times . . .
Replies: 74
Views: 13835

Re: Scary times . . .

I’m fortunate to have other adults here who can get groceries and run to the pharmacy for me so the only time I’m leaving the house is for doctor appointments. Still I am aware of the stigma of wearing an N95 mask when I’m not a healthcare professional on the front lines. Fortunately, all of the nu...
by juliej
Thu Apr 16, 2020 4:20 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Liver lesions
Replies: 14
Views: 3399

Re: Liver lesions

Hello, yes actually had an appointment today. 5 confirmed liver mets. An unrelated ultrasound detected suspicious lesions so ct scan followed. They were unsure if mets so then mri and pet scan to evaluate further. MDT meeting between liver surgeon, oncologist and specialist to decide on which path ...
by juliej
Wed Apr 15, 2020 5:35 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Anything to avoid or relieve first bite pain after FOLFOX ?
Replies: 7
Views: 1713

Re: Anything to avoid or relieve first bite pain after FOLFOX ?

Agree with lovelife. Just holding a spoonful of food in your mouth before biting seems to lessen it somewhat.

It's that or chew the first bite really fast to get it over with so you can get on to bite #2 and no pain! :D It's a real PITA, but goes away a few days after the infusion.

Juliej
by juliej
Wed Apr 15, 2020 5:28 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: My CRC with liver mets journey
Replies: 362
Views: 82203

Re: My CRC with liver mets journey

Well, Dr Kemeny had a last minute change of heart and pulled the Vectibix. I wondered aloud to my local oncologist and got the sense that she didn’t know either, her theory on it didn’t make sense (unless it was a change in strategy due to Covid and no longer wanting to pursue super aggressive trea...
by juliej
Mon Apr 13, 2020 5:56 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Scary times . . .
Replies: 74
Views: 13835

Re: Scary times . . .

WarriorSpouse wrote:https://clinicaltrials.gov/ct2/show/NCT04275414
A clinical trial of Avastin is currently being used for off label Coronavirus treatments.

Oh, that weirdly makes sense! Bevacizumab (Avastin) is anti-VEGF and VEGF is a key factor in ARDS! This might really help!

Thanks for sharing!
Juliej
by juliej
Mon Apr 13, 2020 5:50 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: My CRC with liver mets journey
Replies: 362
Views: 82203

Re: My CRC with liver mets journey

I think the shift to Folfiri is just to shake things up a bit. Folfiri is a strange beast - some people find it much easier to handle than Folfox, others are miserable. I needed Atropine during each Folfiri infusion for abdominal cramping and diarrhea. But I didn't have HFS like with Folfox and Xelo...
by juliej
Wed Apr 08, 2020 5:41 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: My CRC with liver mets journey
Replies: 362
Views: 82203

Re: My CRC with liver mets journey

I was all set to start chemo at NW, but Dr Kemeny put a pause on it; she wants to see the scans herself to be sure it’s new activity. I guess this is her process, and it’s worked for her thus far. One more week of normalcy... I'm glad that Dr. K herself is taking a look at the scans, especially con...

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