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by orlar
Wed Aug 08, 2018 7:01 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: NIH trial update .. my T cells are growing!!
Replies: 20
Views: 715

Re: NIH trail update .. my T cells are growing!!

Fantastic news! Here's to hoping you get a September start date!!!
by orlar
Fri Aug 03, 2018 10:40 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: ER Visit
Replies: 25
Views: 1646

Re: ER Visit

I'm surprised that you were discharged having active blood loss. Hopefully, the pain will subside and you can get back to a normal diet and enjoy that trip.
Take care of your self!

P.S. Getting a specialist appointment in the U.S. can sometimes take a while too! A lot depends on where you live.
by orlar
Sun Jul 29, 2018 11:57 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Tips for a Folfox newbie – starting Tuesday
Replies: 31
Views: 1568

Re: Tips for a Folfox newbie – starting Tuesday

1) I always took anti-nausea pills for several days after my infusion as a routine to prevent nausea. 2) Have a pair of knit gloves around for anything you touch below room temp. (items from fridge/freezer) The cold sensitivity can also affect the inside of your mouth, tongue, lips while eating/drin...
by orlar
Fri Jul 27, 2018 12:45 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Scanxiety, here we go again.
Replies: 7
Views: 743

Re: Scanxiety, here we go again.

Hi Guys, thanks for the good vibes. I did get a call from the ONC last week so I knew the scan wasn't so good. I met with my ONC yesterday to go over the results. CEA up to 7.8, no new lung nodules but existing ones enlarged. Main liver lesion essentially stable in right lobe, but 2 new ones in each...
by orlar
Sat Jul 14, 2018 2:51 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Scanxiety, here we go again.
Replies: 7
Views: 743

Scanxiety, here we go again.

Just had my 10th treatment yesterday on this regimen and ONC is currently planning on chemo holiday. I have a CT scan on Thursday (ins. wouldn't approve PET) and I have a lot more anxiety this time. April's PET showed tumors shrinking, but then I got a pretty severe cold during mid May that lasted w...
by orlar
Sat Jun 16, 2018 12:16 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Taste Change Advice
Replies: 18
Views: 891

Re: Taste Change Advice

Sometimes, I still go through the "what's going to taste good today" routine. For me the cooking smells set the tone. On several occasions I had my wife stop cooking (even microwaving) due to the smell as I wouldn't eat it when finished. I have found out some of my favorites before chemo a...
by orlar
Fri Jun 15, 2018 11:23 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Better news, Neuropathy & questions
Replies: 31
Views: 1975

Re: Better news, Neuropathy & questions

I can only give you my neuropathy experience so far. I had full strength FOLFOX for 8 cycles when the OXAL became to much (bad neuropathy, but final straw was reaction during infusion). Continued with 5FU to cycle 12 which ended 12/17 . My hands and feet worsened for awhile after treatment. Eventual...
by orlar
Fri Jun 15, 2018 10:45 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: hospice
Replies: 13
Views: 1308

Re: hospice

There are few words I can think of that will comfort you and yours right now.
So maybe, just hold his hand and tell him how much he's loved as often as you can.
You're in my thoughts and prayers.
by orlar
Wed Jun 13, 2018 1:09 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Trying Keytruda Off-Label (MSS with a Twist)
Replies: 41
Views: 4573

Re: Trying Keytruda Off-Label (MSS with a Twist)

I'm really glad to see your CEA dropping. Keep that trend going!
by orlar
Fri Jun 01, 2018 6:28 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: CEA dropped!
Replies: 27
Views: 1286

Re: CEA dropped!

That's great to hear! Let's go for another double digit drop on the next CEA.
by orlar
Thu May 24, 2018 10:05 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: It's baaaaaaack!
Replies: 13
Views: 1708

Re: It's baaaaaaack!

Disappointing news to say the least. Trying not to be clique, but you've been down this road before and what's involved. Hang tough and I hope whatever treatment plan you decide on kicks the big "C" to the curb for the duration! Larry
by orlar
Tue May 15, 2018 12:50 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Scan results not what I had hoped for ...
Replies: 29
Views: 1962

Re: Scan results not what I had hoped for ...

Shana, I know your latest scan wasn't what was hoped for, but with the increased Irinotecan I'm hoping that may push things back on the right track. I would be interested on what you find out concerning potential clinical trials and that process since you are feeling strong. Positive thoughts headin...
by orlar
Wed May 09, 2018 12:30 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Déjà vu
Replies: 11
Views: 1224

Re: Déjà vu

Really happy to hear it is not a recurrence! Hope your recovery is a gentle one.
by orlar
Mon May 07, 2018 10:08 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Trying Keytruda Off-Label (MSS with a Twist)
Replies: 41
Views: 4573

Re: Trying Keytruda Off-Label (MSS with a Twist)

I hope Keytruda does the trick! I've noticed several people have been going off label (other forums) and having success. Good luck and keep us posted!
by orlar
Fri Apr 27, 2018 10:57 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Working during Irenotecan
Replies: 5
Views: 857

Re: Working during Irenotecan

I just completed cycle 5 with Folfiri + Avastin. So far I've found it overall more tolerable than Folfox. Usually I get one good loose stool after infusion on day 1, then pretty much o.k. with no or very little diarrhea the rest of the cycle. I seem to notice more fatigue and less nausea (from cycle...

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