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by mhf1986
Mon Nov 19, 2018 6:55 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Sad news
Replies: 17
Views: 1458

Sad news

DH and I decided to take a jaunt to Florida over Halloween week. About half way through, he started feeling badly and very tired. Asked for abdomen drain when we got back and they did 1 lung too. Went in a week later for another lung, wound up with a permanent lung catheter, which was actually prett...
by mhf1986
Wed Oct 24, 2018 8:01 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: any tips for settling into home after surgery?
Replies: 10
Views: 1008

Re: any tips for settling into home after surgery?

Night lights in the bathroom and on the way there.

Absorbent, disposable cloths for under sheets (medical supply house has them in boxes, unfold and put under sheet on mattress).

Books, magazines, puzzles, whatever his favorite is to keep mind engaged.

Table by bed or chair to hold everything.
by mhf1986
Tue Oct 23, 2018 7:52 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Pseudo Progression vs. mixed response to therapy
Replies: 5
Views: 947

Pseudo Progression vs. mixed response to therapy

Another update: Georgetown suggested the following... It's not pseudo progression nor the end of the world, it's a mixed response which is common with some of these monotherapies Genomic testing (Foundation or other) Lonsurf+Avastin (popular in Japan, now getting traction here) Proton the liver tumo...
by mhf1986
Mon Oct 22, 2018 3:36 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Update
Replies: 6
Views: 645

Re: Update

Sending HUGS.

M
by mhf1986
Sun Oct 21, 2018 1:32 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Isolation
Replies: 14
Views: 1169

Re: Isolation

DH has had his stoma now for 2 years. It's not fun some days, especially with the irinotican. However, he goes to work every day on the subway, taking extra pouches. We've been to Europe, Disney, and NYC. It takes planning, yes. Can you make a list of what you need to go out comfortably? What is the...
by mhf1986
Sat Oct 20, 2018 8:42 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Pseudo Progression vs. mixed response to therapy
Replies: 5
Views: 947

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 vs. mixed response to therapy
Replies: 5
Views: 947

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: 19
Views: 2148

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: 13
Views: 1855

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 vs. mixed response to therapy
Replies: 5
Views: 947

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: 1385

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 vs. mixed response to therapy
Replies: 5
Views: 947

Pseudo Progression vs. mixed response to therapy

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: 1478

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

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