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by Claudine
Wed Feb 07, 2024 11:45 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Rage against the (American healthcare) machine
Replies: 4
Views: 716

Re: Rage against the (American healthcare) machine

I've thought about contacting Germany to see if they could offer cheaper and see if it would cross the border or not. Worth a try; I have a friend who gets her meds from Canada (not cancer though). I was off with the amount of Xeloda; it will be 3000mg daily (twice 1500), one week on, one week off....
by Claudine
Tue Feb 06, 2024 11:27 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Rage against the (American healthcare) machine
Replies: 4
Views: 716

Rage against the (American healthcare) machine

Back in December, when DH did his first Lonsurf cycle, copay was waived and it cost us nothing. When the onc sent the prescription for cycle 2 though, it wasn't the same deal. We tried 5 different specialized pharmacies; 4 are asking monthly copays varying from $8000 to $10,000/month; one (Lumicera)...
by Claudine
Mon Feb 05, 2024 1:32 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Average time on folfiri avastin
Replies: 3
Views: 802

Re: Average time on folfiri avastin

Well, my husband did 18 3-week cycles, and never developed resistance. He stopped it to get surgery (the point was to reduce the size of his adrenal met, and eliminate micro lung mets), and could get back on it, if need be. I must say, though, that side effects (especially fatigue) became worse towa...
by Claudine
Mon Feb 05, 2024 1:29 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Gee it’s quiet here huh…
Replies: 18
Views: 4044

Re: Gee it’s quiet here huh…

Stu!!! So good to hear from you. You were always such a positive light on this forum, I'm glad to read that your mum is enjoying life :D :D :D
by Claudine
Fri Jan 05, 2024 10:48 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Neuropathy from FOLFOX?
Replies: 11
Views: 2255

Re: Neuropathy from FOLFOX?

My husband has permanent (and somewhat painful) neuropathy in both feet because of Xelox. It's no joke, don't wait before mentioning it to your doctor!
by Claudine
Thu Jan 04, 2024 11:36 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Gee it’s quiet here huh…
Replies: 18
Views: 4044

Re: Gee it’s quiet here huh…

Thanks guys! He's on something that does help with nausea; the main problem is diarrhea - he was finally doing much better with his LARS (1+ year post ileostomy reversal), and now it's back to living on the toilet/wearing Depens... He's taking Imodium, and we've been very careful with food; I hope t...
by Claudine
Wed Jan 03, 2024 3:48 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Gee it’s quiet here huh…
Replies: 18
Views: 4044

Re: Gee it’s quiet here huh…

Well, I was waiting to get results from DH's first cycle on Lonsurf + Avastin before posting, and we just got those today. His onc decided to try this instead of putting him back on Folfiri in the hope that it wouldn't be as taxing on his body, but boy, it was almost as bad (minus the hair loss): ex...
by Claudine
Mon Dec 18, 2023 1:34 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Good news, but a little tainted
Replies: 1
Views: 3055

Re: Good news, but a little tainted

Hi Bianca, Yes, I can relate. When DH had Folfiri + Avastin 4years ago (or 5? I lose track) to shrink his adrenal met prior to surgery, I will never forget when we met with his onc after the first couple of cycles and he said, "and the good news is, the adrenal met is shrinking, and so are your...
by Claudine
Thu Dec 14, 2023 1:36 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Scans
Replies: 2
Views: 2840

Re: Scans

The way healthcare works in this country never ceases to amaze me. DH is going to get on a systemic treatment (it's been 4 years), Lonsurf + Avastin. Yesterday we got a call letting us know that copay would be around $8000/month, LOL!!! Then the hospital requested some waiver of the copay and sudden...
by Claudine
Wed Oct 25, 2023 1:29 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: I'm having obsessive thoughts as to why?
Replies: 10
Views: 2427

Re: I'm having obsessive thoughts as to why?

Pagola, I'm not sure where you live, but in Montana there's a group (may be nationwide) with local chapters, called Cancer Support Community Montana (https://cancersupportmontana.org/). They provide a variety of services, group meetings for patients as well as relatives, counseling, gentle exercise ...
by Claudine
Tue Oct 24, 2023 11:20 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Trial update - ATRIUM (ATG-018)
Replies: 30
Views: 13739

Re: Trial update - ATRIUM (ATG-018)

I'm so sorry the trial did not work for you, RR. My husband also has the TP53 mutation... But it looks like you still have quite a few options. Keep on fighting XXXXX
by Claudine
Tue Oct 24, 2023 11:18 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: I'm having obsessive thoughts as to why?
Replies: 10
Views: 2427

Re: I'm having obsessive thoughts as to why?

What you are going through is totally understandable, absolutely normal, but me saying so doesn't help, does it? When my husband and I started dating, he warned me: "I need you to know, before we go any further, that I have Crohn's disease". At the time, I couldn't fathom that it would lea...
by Claudine
Wed Oct 18, 2023 9:58 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Beginning TIL Therapy at NIH Next Week
Replies: 151
Views: 84730

Re: Beginning TIL Therapy at NIH Next Week

This is great news!!! Cancer battle is almost never a "one time done deal", it's more of a "guerre d'usure" where you have to keep hammering at it until it finally disappears. You seem to be on a good path!
by Claudine
Tue Oct 17, 2023 10:18 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Minimal side effects correlated to success?
Replies: 4
Views: 1254

Re: Minimal side effects correlated to success?

Compared to Xelox (Xeloda/Oxaliplatin), Folfiri/Avastin felt like a breeze to DH! He had 18 cycles and the later ones hit him a bit harder (more fatigue); also, he started losing his hair after 2-3 cycles, but he never was completely bald, it just thinned quite a bit (especially his beard). he even ...
by Claudine
Mon Oct 16, 2023 10:27 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Beginning TIL Therapy at NIH Next Week
Replies: 151
Views: 84730

Re: Beginning TIL Therapy at NIH Next Week

Hope all goes well, keep us posted, you've been a real fighter!

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