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by juliej
Thu Apr 18, 2019 5:43 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Reversals Any positives?
Replies: 10
Views: 208

Re: Reversals Any positives?

It took me a full 3 months to get back to normal (well, my "new normal"). As others have noted, the first few months are the hardest. Your plumbing has been "offline" for awhile so it takes some time for it to get used to processing food. I was beyond thrilled when I produced my ...
by juliej
Wed Apr 17, 2019 6:20 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Anyone doing xelox and xeloda. Please help
Replies: 46
Views: 6199

Re: Anyone doing xelox and xeloda. Please help

Jolene: Your night sweats and temperature dysregulation could well be correlated to the corticosteroids you are receiving (dexamethasone). Your insomnia and interrupted sleep and heightened energy could also be correlated to the corteocosteroids. You may want to discuss with your oncologist a dose ...
by juliej
Wed Apr 17, 2019 6:11 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Reversal Log: Experience,Problems, Q & A's
Replies: 434
Views: 76129

Re: Reversal Log: Experience,Problems, Q & A's

I'm actually using them ATM miss Molly because of my incontinence :| STILL I'm absolutely in a heap ATM I'm 4 weeks out and (sorry for the graphic contents) My ass is bleeding from wiping ( water wipes or shower head only)........ Along with the cheeks of my bum ( using truckload of zinc cream and ...
by juliej
Wed Apr 17, 2019 5:06 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Anyone doing xelox and xeloda. Please help
Replies: 46
Views: 6199

Re: Anyone doing xelox and xeloda. Please help

I believed coconut water is well know for his electrolytes too ! I may look up other sports drinks for a change too I guess ! Nuun tabs are another possibility. I used them all throughout my Xelox treatments. They come in a variety of flavors (lemon-lime is my favorite!). You just add the tablet to...
by juliej
Thu Apr 11, 2019 6:22 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: HAI pump criteria
Replies: 21
Views: 1293

Re: HAI pump criteria

I had to avoid contact sports (like volleyball), scuba diving, and hot tubs. I would think yoga would be fine, but it's always best to check with the docs first. Juliej Just gotta say ..... except for that one time in Palm Springs ... :oops: I have never really considered "hot tubbing" as...
by juliej
Thu Apr 11, 2019 5:52 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Does your Medtronic pump TICK?
Replies: 4
Views: 218

Re: Does your Medtronic pump TICK?

I talked to a Medtronic rep this morning. She confirmed that I was hearing the gears that move in the device and that it’s possible I would hear it during “quiet times.” That seems to mean any time I’m not actively listening to something / someone else. I sure hope I get used to it! But I guess thi...
by juliej
Tue Apr 09, 2019 6:04 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: HAI pump criteria
Replies: 21
Views: 1293

Re: HAI pump criteria

Pump is not having any side effects like a systemic chemo does. No fatigue or anything. That’s great! CAn I ask what limitations you have in terms of activity with the pump? I’m a fitness instructor/yoga teacher and am concerned that I won’t be able to keep my job if I get the HAI pump. Dr K says n...
by juliej
Tue Apr 09, 2019 5:55 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: My CRC with liver mets journey
Replies: 104
Views: 11051

Re: My CRC with liver mets journey

I asked Dr Kemeny to consider keeping me on FOLFOX since my response to it has been so good so far. She wanted to spend some more time with my file before deciding which chemo to use. I think Dr Kemeny’s instinct is to switch to FOLFIRI. I had such a tough time with diarrhea on FOLFOX that I’m a li...
by juliej
Thu Apr 04, 2019 2:09 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Thinking of you AmyG
Replies: 26
Views: 1603

Re: Thinking of you AmyG

In other news, Nicholas was 6.12 last Friday and today his goal weight was 7.1 My little porker was 7.7! :shock: 10 ounces in 5 days!! The average newborn gains 2/3 to 1 ounce a day, so he is double that number! He sounds like one healthy baby! :D :D :D About your port, try to get a PowerPort if yo...
by juliej
Thu Apr 04, 2019 1:59 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Malaware adds or substracts cancerous nodes from scans
Replies: 4
Views: 326

Re: Malaware adds or substracts cancerous nodes from scans

Very scary proposition for sure ... BUTT this example is a white hat hacking to expose vulnerabilities Good point, CRguy!!! White hat hackers are an integral part of the cybersecurity community. Without them, we'd never know of the many exploits perpetrated on our personal computers, cell phones, w...
by juliej
Wed Apr 03, 2019 5:58 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Malaware adds or substracts cancerous nodes from scans
Replies: 4
Views: 326

Re: Malaware adds or substracts cancerous nodes from scans

Well, this is worrisome. Hospitals need to use encryption across their networks and to use digital signatures to prevent this kind of thing from happening. Everyone knows about HIPAA's privacy rules, but no one thinks about the data from their CT scan being compromised. Genome sequencing data would ...
by juliej
Thu Mar 28, 2019 3:59 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Supporting my husband with a new DX *UPDATE*
Replies: 25
Views: 3012

Re: Supporting my husband with a new DX *UPDATE 3/25/2019*

Please tell me these are all good signs and we will have an amazing scan that will lead to his tumor being operable. These facts -- that he is not in pain anymore, he is gaining weight back, he bounces back from chemo, he is feeling better than he has in a long time -- all are great signs that the ...
by juliej
Thu Mar 28, 2019 3:42 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Radiation FAQ
Replies: 8
Views: 307

Re: Radiation FAQ

My doctor told me that the HAI pump would not be an option for me if I did radiation. Have you asked about that? It’s practically only by chance that we found out! Agree with Gina! Radiation could eliminate the possibility of getting HAI treatment, so I'd think long and hard about that. Intensity-m...
by juliej
Wed Mar 27, 2019 5:14 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: SBRT vs Cryo for lung mets & Maint schedule
Replies: 7
Views: 315

Re: SBRT vs Cryo for lung mets & Maint schedule

The folks I've seen with SBRT tore up a lot of real estate and didn't gain as much as other methods of removal might have. Agree. There's considerable collateral damage from SBRT. Sometimes they fail to mention that. RFA is a better alternative. There are several ways to use MCV, where John Marshal...
by juliej
Wed Mar 27, 2019 5:05 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: HAI pump criteria
Replies: 21
Views: 1293

Re: HAI pump criteria

One more tip: try getting a referral from your surgeon or oncologist. The referrals go straight to Dr. Kemeny so she'll read about your case. Have the referring doc mention that the ovarian mets have been dealt with and the only concern is the liver mets. Also, ask him to mention that you are in goo...

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