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by mhf1986
Sat Oct 20, 2018 8:42 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Pseudo Progression: how to diagnose?
Replies: 4
Views: 453

Re: Pseudo Progression: how to diagnose?

Update: Georgetown U meeting on Tuesday, new CT scan on Nov 6. Supposed to start Lonsurf then too but going to wait until after CT scan results. Been emailing with NIH and they said don't start yet if DH wants to try for their trial. Said they like to do the tests and such before starting the next t...
by mhf1986
Tue Oct 16, 2018 7:17 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Pseudo Progression: how to diagnose?
Replies: 4
Views: 453

Re: Pseudo Progression: how to diagnose?

So here's the latest thing we were told and if it wasn't sad it would be funny...

Additional genetic testing such as what we are asking for (Foundation One) is not standard of care.

Off to a new doctor next week.

M
by mhf1986
Tue Oct 16, 2018 3:41 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Quality of life on Folfox and others
Replies: 6
Views: 410

Re: Quality of life on Folfox and others

DH was on FOLFOX +Avastin for 18 months with a short summer break in the middle. He had treatments on Tuesdays and took off those Thursdays to nap/have port needle removed. There was some neuropathy (he can still type fine), some sensitivity to cold, and some fatigue. Lots of good pretreatment drugs...
by mhf1986
Fri Oct 12, 2018 4:45 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Need Support - Told today I'm on Palliative Care
Replies: 8
Views: 736

Re: Need Support - Told today I'm on Palliative Care

2 years ago this week, DH was told the same thing. It is heartbreaking to hear the medical community believes there is no cure. But he continues on, now looking for approval from the insurance company for Lonsurf and looking into clinical trials. I am amazed every day at him. Be your own best advoca...
by mhf1986
Mon Oct 08, 2018 5:38 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Pseudo Progression: how to diagnose?
Replies: 4
Views: 453

Re: Pseudo Progression: how to diagnose?

Yes, hiker, you are correct. It is a major cancer center but I don't trust him. At the risk of being "ageist", he's on the verge of retirement, resting on his laurels in previous research in ovarian cancer many years ago, and very conservative in his approach. (I heard from someone else on...
by mhf1986
Sun Oct 07, 2018 9:28 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: New here - My cautionary tale
Replies: 11
Views: 946

Re: New here - My cautionary tale

PREACH!!!! LOUD and OFTEN! I have often told DH that WE are our own best friends, caregivers, etc. We have seen that if a doctor does not have access to something (drug, machine, trial, etc), then he will say "that won't work" rather than saying "go across the street, they have it.&qu...
by mhf1986
Sun Oct 07, 2018 9:15 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Pseudo Progression: how to diagnose?
Replies: 4
Views: 453

Pseudo Progression: how to diagnose?

I'm grasping at straws here but as I told DH, I'll do anything! Background: FOLFOX failed in May with CT showing increase of largest liver tumor from 3 cm to 5 cm. Bilirubin up to 6 with obvious jaundice (blockage of any way out says onc), LFTs are all bad, abdomen filled with fluid, as did lungs. D...
by mhf1986
Fri Oct 05, 2018 7:17 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Scanxiety, here we go again.
Replies: 11
Views: 1185

Re: Scanxiety, here we go again.

Hi Larry, Check out my DH's timelime below...it's similar to yours. May I ask what trial you are considering? We are investigating them now.

Dr. is calling insurance company about Lonsurf and DH may try that while we decide what to do next. If the Lonsurf is terrible, we will move on.

Thanks,
M
by mhf1986
Fri Oct 05, 2018 7:00 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Keytruda....Working for MSS....Mutation Burden is the Key
Replies: 21
Views: 5803

Re: Keytruda....Working for MSS....Mutation Burden is the Key

Thank you so much! A good place to start. DH surprised everyone with FOLFOX working for 18 months. Now he's surprising everyone with the Vectibex+Irinotican only working 4 months. It was such a big surprise because the CEA was mostly stable and the liver function tests were looking good. No one expe...
by mhf1986
Fri Oct 05, 2018 11:21 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Keytruda....Working for MSS....Mutation Burden is the Key
Replies: 21
Views: 5803

Re: Keytruda....Working for MSS....Mutation Burden is the Key

:?: :?: Can anyone tell me where a study program in the US is or give me reference to a scholarly article about this? DH liver tumors, lymph nodes, and lung things grew again after only 5 months on Vectibex/Irinotican. The July scan showed shrinkage of a liver tumor to 3cm and now it's bounced up to...
by mhf1986
Mon Sep 24, 2018 6:30 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: CEA increase on FOLFIRI
Replies: 5
Views: 414

Re: CEA increase on FOLFIRI

Yes, DH started at 114, then dropped to 40 after surgery only to bounce up to 80 after his first 2 treatments. Dr. said it was the tumor rapidly throwing off the protein, trying to survive. CEA steadily declined after that and tumors did shrink. We are waiting on CEA results now, haven't seen any si...
by mhf1986
Sun Sep 23, 2018 12:45 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Vectibix - Distant LN spread
Replies: 6
Views: 585

Re: Vectibix - Distant LN spread

DH started on Vectibix in May + then added 66% Irinitican dose in June (no 5FU) every 2 weeks. The Vectibex rash showed up at the 2nd treatment but is very manageable: good face moisturizer morning and night, sunblock when he's outside, and Aveeno Oatmeal Lotion for chest and back rash. Prescription...
by mhf1986
Tue Sep 11, 2018 8:02 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Good news!
Replies: 13
Views: 1542

Re: Good news!

DH has been doing Vectibex since May. First session was nothing and then boom...his face looked like really bad acne, complete with white/yellow zits. Red dots spread to chest and back. It has calmed down now some since he's learned how to take care of it. He has learned several lessons: don't pick ...
by mhf1986
Sat Sep 08, 2018 6:40 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Irinotecan Only
Replies: 1
Views: 394

Re: Irinotecan Only

DH is on Vectibix and Irinotecan only, no 5FU. Doctor said the 5FU had probably done all it could.
by mhf1986
Wed Sep 05, 2018 7:06 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: The things people say to cancer patients
Replies: 44
Views: 6944

Re: The things people say to cancer patients

How do caregivers respond when asked "How are you?" My honest thought is "How the bleep do you think I am?" How do you respond to "How many more chemo treatments?" or "How much more chemo is required?" when the answer is forever? I once responded "Til it ...

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