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by raym
Sun Sep 21, 2014 3:26 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: DEATH AND TAXES
Replies: 21
Views: 1746

Re: DEATH AND TAXES

exaussie wrote:Because the alternative is giving up which sucks....


From my point of view there is a fine line between giving up and acceptance of something you can't change.
by raym
Sun Sep 21, 2014 1:12 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Ugh. In hospital with pevic abscess - updated 9/21/14
Replies: 50
Views: 4929

Re: Ugh. In hospital with pevic abscess - updated 9/21/14

I have a super bug! e. coli ESBL Now on contact isolate which just means visitors have to gown and glove to avoid in advertant spread to the hospital. I don't think I'm really contagious, just infection control protocol. Testing still shows the drug I'm on is the correct one. PICC line installation ...
by raym
Sat Sep 20, 2014 6:58 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Clinical Trial Diary: 5-azacitidine+romidepsin Stopped 9/16
Replies: 36
Views: 5467

Re: Clinical Trial Diary: 5-azacitidine+romidepsin Stopped 9

RAY Please refesh my memory (and I will be going over the entire post in case my brain misfired)..... what immunotherapy action did this drug have? Ours is CMet inhibition in the Tivantinib Trial. We spent a good deal of time this week up in LA at the Clinic... so will be updating more today. I was...
by raym
Sat Sep 20, 2014 11:38 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Clinical Trial Diary: 5-azacitidine+romidepsin Stopped 9/16
Replies: 36
Views: 5467

Re: Clinical Trial Diary: 5-azacitidine+romidepsin

I'm officially out of the trial. I had decided on my own a few weeks that it was too debilitating. I guess my current pelvic abscess would also have dropped me out as I need to have a decent immune system for awhile. It went into it knowing it could have nasty side effects but figured I should not t...
by raym
Sat Sep 20, 2014 8:27 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Ugh. In hospital with pevic abscess - updated 9/21/14
Replies: 50
Views: 4929

Re: Ugh. In hospital with pevic abscess - updated 9/20/14

Still in the hospital, getting IV meds. The lab has identified a few bacteria in the abscess and I have been switched to a more effective antibiotic (Erdipenam). So far they have not found any oral antibiotics that will work well so I will most likely be going home with a PICC line installed so I ca...
by raym
Fri Sep 19, 2014 9:25 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Chemo a no-brainer??
Replies: 20
Views: 2352

Re: Chemo a no-brainer??

If getting Oxaliplatin I would highly recommend a port. I've never had Oxaliplatin via IV but based on the experience of others, it can be painful and cause localized damage to the veins. Port placement is a pretty easy procedure. You can then discuss if you go 5FU or Xeloda. Xeloda was convenient, ...
by raym
Thu Sep 18, 2014 11:03 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Port out, take down done!
Replies: 25
Views: 2325

Re: Port out, take down done!

Doing the happy dance for you though a little subdued due to drain in my butt (bum) cheek.
by raym
Thu Sep 18, 2014 6:48 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Ugh. In hospital with pevic abscess - updated 9/21/14
Replies: 50
Views: 4929

Re: Ugh. In hospital with pevic abscess

How are they doing with managing your pain Ray? :shock: I hope you aren't feeling a thing! Take care and get well soon! Pain management is good though during the day I lean on the being awake side versu more pain management. A lot of discomfort and I up the oxycodone dose up at night. Its pretty co...
by raym
Wed Sep 17, 2014 8:45 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Ugh. In hospital with pevic abscess - updated 9/21/14
Replies: 50
Views: 4929

Ugh. In hospital with pevic abscess - updated 9/21/14

I was admitted yesterday to Johns Hopkins yesterday to treat a pelvic abscess, We were away in vacation last week and I just felt generally crappy. Also had a fever here and there. Later in the week I noticed a painful swelling on my right butt cheek. My wife commented it was in the area where I had...
by raym
Sun Sep 14, 2014 5:07 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Reading a scan report
Replies: 5
Views: 1106

Re: Reading a scan report

Typically they word it such that they are not drawing a positive identfication of a abnormality, just that something is suspicious or indicative of metastatic cancer. There are times where growths can appear that are not cancer, so without a biopsy positive identification is not possible.
by raym
Sat Sep 13, 2014 8:14 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Did irinotecan work on lung mets for anyone?
Replies: 20
Views: 2746

Re: Did irinotecan work on lung mets for anyone?

I was on irinotecan for a few months. Felt like crap for 2 or 3 days, diarhea. Hair loss after several weeks. I started back up on it this past spring. Higher side effects really bad diarrhea. I was not in great shake to start but I stopped after a few rounds..just too much.
by raym
Thu Sep 11, 2014 9:53 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Diaphragm
Replies: 3
Views: 711

Re: Diaphragm

The only experience i have had is a small portion of my diaphragm was removed during HIPEC surgery due to mets on it. So a small part of a much larger procedure.
by raym
Tue Sep 09, 2014 10:36 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Hospital Stay Duration
Replies: 21
Views: 2222

Re: Hospital Stay Duration

For me 4 days for original Laparoscopic colon resection, 12 days for HIPEC..... 13/14 days for a pelvic abscess (no surgery, just intervention)
by raym
Mon Sep 08, 2014 8:15 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Odd questoin - how to turn down offers for help
Replies: 14
Views: 1380

Re: Odd questoin - how to turn down offers for help

I completely understand Ray. I think that you should be honest and say why it will be stressful for you - those are very valid reasons. I'm sure that they mean well but don't realise the issues that you will have. Just let them know. Or if they keep insisting say that you and your wife will go out ...
by raym
Mon Sep 08, 2014 1:16 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Odd questoin - how to turn down offers for help
Replies: 14
Views: 1380

Odd questoin - how to turn down offers for help

I know many people complain of lack of help by friends and family members. I'm in a reverse situation. We have a lot of things neglected in our yard (weeds, pruning, shrub trimming, some grass planting, mulching)..that neither my wife nor I have the time and/or energy to deal with. We could probably...

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