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by juliej
Thu Apr 16, 2020 4:33 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Scary times . . .
Replies: 74
Views: 12872

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: 3126

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: 1449

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: 344
Views: 73246

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: 12872

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: 344
Views: 73246

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: 344
Views: 73246

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...
by juliej
Wed Apr 08, 2020 5:19 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: One year anniversary and now delayed surveillance
Replies: 15
Views: 2756

Re: One year anniversary and now delayed surveillance

Here are the official ASCO guidelines. Hope this helps! SURVEILLANCE: Can/should patients receiving ongoing surveillance (e.g. imaging for detection of recurrence, active surveillance for existing disease) have that surveillance delayed/interrupted? In general, as recommended by the CDC, any clinic ...
by juliej
Wed Mar 11, 2020 5:22 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Still Kicking
Replies: 5
Views: 888

Re: Still Kicking

Kathy, you don't know me, but I've thought of you often and hoped that things were improving for you. LIfe has certainly knocked you down, more than a few times. I know you don't want sympathy, so I'll just say life is tough, but so are YOU! No matter how bad things get, nobody can dim the light tha...
by juliej
Wed Mar 11, 2020 5:14 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Almost made 5 years and now have a recurrence
Replies: 10
Views: 1211

Re: Almost made 5 years and now have a recurrence

Kiwi and CRguy have given you some great advice. I'm a big fan of surgery over RFA if it's possible simply because, as my surgeon said, once it's cut out, it's really GONE! I had VATS on all my lung surgeries. It is a minimally invasive surgery, but my thoracic surgeon warned me he might have to do ...
by juliej
Tue Mar 03, 2020 4:46 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Rectal cancer (Stage 3A) diagnosed late June 2017
Replies: 1685
Views: 412136

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Magnesium might be a problem for me as well. I'm a runner so I take magnesium and potassium daily. I'm also chronically low in vitamin D, and magnesium plus a D3 supplement helps boost my levels. However, I take " magnesium glycinate ." It's easier to absorb magnesium in this form (as opp...
by juliej
Mon Mar 02, 2020 6:00 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Rectal cancer (Stage 3A) diagnosed late June 2017
Replies: 1685
Views: 412136

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

My max Out-of-pocket is $2K/year so I pay $2K/year. My max out-of-pocket is close to that and I pay it every year too. In some ways, I wish I could just pay it up front instead of getting all those individual bills over the year. Somewhere around the end of the summer I'm paid up and everything is ...
by juliej
Mon Mar 02, 2020 5:51 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: 16 days post op. Diet questions.
Replies: 5
Views: 773

Re: 16 days post op. Diet questions.

Give your body time to recover. Agree with Lee. Give your body time to adjust to its new plumbing. :D MSKCC says, "Sometimes, having part of your bowel removed can make you lactose intolerant" -- so I guess it does happen. However, your bowels might just be irritated right now and you'll ...
by juliej
Tue Feb 25, 2020 7:06 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Need Support - Told today I'm on Palliative Care
Replies: 64
Views: 25849

Re: Need Support - Told today I'm on Palliative Care

My revised PT workouts: Lifting his leg several times a day. Whatever he did to it resulted in his inability to lift it at all. I'm sure his leg weighs more than my little weights. Steps on my watch are totally at least 1 mile per day. Stairs are at least 5 flights. (14 steps up to our 2nd floor.) ...
by juliej
Tue Feb 25, 2020 6:30 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Clot-Busting in Port?
Replies: 6
Views: 941

Re: Clot-Busting in Port?

Sometimes fibrin sheaths encase the outer wall and the endhole of the catheter causing all kinds of problems! :roll:

However, I'd want a good Heparin flush to make sure no gunk was inside the port. You might ask if they'd be willing to do it after your infusion tomorrow.

Juliej

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