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by juliej
Wed Mar 11, 2020 5:22 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Still Kicking
Replies: 5
Views: 501

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: 651

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: 1668
Views: 389217

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: 1668
Views: 389217

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: 428

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: 62
Views: 21395

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: 570

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
by juliej
Tue Feb 25, 2020 6:22 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Cea on the rise
Replies: 68
Views: 5119

Re: Cea on the rise

Well this is it. my liver has ben taking over by cancer. and still climbing at very fast rate. so to all my friends and family.. now would be the time at ur convence to come say good byes. PM me. thank u. My husband's Facebook post today, and just like that my world crashes all around me and our so...
by juliej
Mon Feb 24, 2020 8:24 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Cea on the rise
Replies: 68
Views: 5119

Re: Cea on the rise

I get the impression from the new surgical oncologist that OSU wasn't monitoring DH right, if at all. This is so frustrating. DH has been pretty tight lipped, makes me feel like he might be blaming me or maybe it's my own guilt I can't help but feel. I ask him what he's thinking because there's a l...
by juliej
Thu Feb 20, 2020 6:30 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Cea on the rise
Replies: 68
Views: 5119

Re: Cea on the rise

Not good news. The CT scans show liver progression. I am so sorry to hear that! Now it's important to figure out why the pump isn't working. Are there areas of his liver that aren't getting the FUDR? That can happen, but rarely. The oncologist can order a "flow scan" of his liver to see i...
by juliej
Wed Feb 19, 2020 6:34 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Cea on the rise
Replies: 68
Views: 5119

Re: Cea on the rise

The order has been put in for FOLFIRI instead of FOLFOX, he has CT scans today and is supposed to see there new Doc to refill his HAI, so plan in place just nervous. Sounds like you're on the right track. You need more info at this point and the CT scan will provide that. Will be thinking good thou...
by juliej
Tue Feb 18, 2020 7:39 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Ileostomy Reversal -- What do I pack/prep/plan?
Replies: 5
Views: 487

Re: Ileostomy Reversal -- What do I pack/prep/plan?

... my mom (ha,ha) said: -do sphincter clenches... ha... my mom... but actually- is she right? Your mama is right!!! :D :D :D Your rectum and sphincter muscles need a bit of retraining due to lack of use. Start now so they'll be good and strong by the time you have the reversal. These can be done e...
by juliej
Tue Feb 18, 2020 7:19 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Cea on the rise
Replies: 68
Views: 5119

Re: Cea on the rise

Has anyone ever had a negative effect of HAI DH keeps on believing that his liver has regrown and added tumors (before even seeing a new scan) I think it's too easy to make wild speculations before seeing the latest CT/PET scan results. All that stress and worry isn't good for him or for you. Just ...
by juliej
Wed Feb 12, 2020 6:23 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Never able to be cured....I need u guys more than ever
Replies: 17
Views: 1739

Re: Never able to be cured....I need u guys more than ever

Of course, every case is different, but here's my story. I had chemo for 14 months straight. At the end of that, I was told emphatically that I was not and never would be a candidate for surgery. I had mets in every lobe of my liver and both lungs. They said if they operated on one area, then the ot...
by juliej
Fri Feb 07, 2020 6:09 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: No more chemo?
Replies: 51
Views: 4796

Re: No more chemo?

Dr. Vogl wrote me that Jesper's crazy high CEA is probably because of the lung mets (he said high CEA often comes from lung mets, but I don't know if that's a true datum - seems like something he has often observed as being the case). I guess 70,000 makes sense if you have so many mets. I think the...

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