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by Rock_Robster
Mon Feb 05, 2024 8:56 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Cea after surgery
Replies: 4
Views: 787

Re: Cea after surgery

Mine was ~14 pre-op and had dropped to <2 when we tested a couple of months after surgery (maybe 8 weeks?), but that does mean I can’t tell you exactly how fast it got to ‘normal’. Of course surgery itself is a highly inflammatory process so this could also confound CEA results. Are you tracking CRP...
by Rock_Robster
Sun Feb 04, 2024 8:51 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Pleural effusion management
Replies: 3
Views: 840

Re: Pleural effusion management

Gosh, Wish I could contribute (especially after all the help you've provided for me), But i just don't know enough ... I did a bit of research and tried to find something but everything just seems to what you already know , diet, exercise, breathing exercises, also read acupuncture could help if sy...
by Rock_Robster
Sun Feb 04, 2024 8:50 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Lung mets cough
Replies: 16
Views: 6733

Re: Lung mets cough

I hope your cough is better. I suffer from dry cough, use 4L of oxygen at night and have at least three areas of atelectasis. I use oral hydrocodone when sick but find the most relief from my ultrasonic humidifier with breathing friendly organic essential oils. I can’t sleep without it now. It is a...
by Rock_Robster
Sat Feb 03, 2024 4:32 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Pleural effusion management
Replies: 3
Views: 840

Pleural effusion management

So last scan results were pretty good, albeit a bit hard to interpret as the radiologist reported against the wrong comparison scan which meant an extra month off-treatment was included at the start of the interval. So we need to get that fixed. But overall, nothing too threatening at present and th...
by Rock_Robster
Thu Feb 01, 2024 9:17 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Recurring
Replies: 21
Views: 4620

Re: Recurring

Thamks, utahgirl! I was reviewing scan report again and noticed something I've never seen noted ever before. Stated: Backgound normal hepatic SUVmax (based upon bodywieght gm/ml: 1.8. This is noted before the reading of scan. Lesional SUVmax noted below if relevent. Anyone else ever seen this prere...
by Rock_Robster
Thu Feb 01, 2024 11:45 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Average time on folfiri avastin
Replies: 3
Views: 815

Re: Average time on folfiri avastin

The median time to progression on FOLFIRI+Bev is more like 10 months, but that’s a pretty meaningless figure as there are a decent cohort of patients who are able to stay on it for several years (and indeed some that unfortunately progress within a few months or don’t respond at all). The issue here...
by Rock_Robster
Fri Jan 26, 2024 6:38 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: To set a goal or not set a goal; that is the question.
Replies: 7
Views: 1356

Re: To set a goal or not set a goal; that is the question.

My wife and I make plans or perhaps ‘ambitions’ rather than goals. The key difference being recognising where the locus of control truly lies, and making sure you aren’t setting yourself up for disappointment if you’re unable to do something in spite of your best efforts. Bigger things - we book a l...
by Rock_Robster
Fri Jan 26, 2024 8:13 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Re: New guy with old questions.
Replies: 40
Views: 4185

Re: New guy with old questions.

Also it’s a small thing but I’m going to be pedantic as accuracy matters with these things - worth checking if you’re doing FOLFIRINOX or FOLFOXIRI. It’s the same drugs but the dosages are different; the former is usually used in pancreatic cancer and the latter more so in colorectal cancer.
by Rock_Robster
Thu Jan 25, 2024 6:38 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Joint pain whilst on Avastin?
Replies: 6
Views: 1020

Re: Joint pain whilst on Avastin?

I’m not aware of any hard rule that says you have to stop Avastin with a clot, although its use can certainly increase the risk of a clot forming. If the clot is not large then the usual treatment is just to start daily blood thinners, which stop its growth such that the body can then break it down ...
by Rock_Robster
Thu Jan 25, 2024 4:53 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Joint pain whilst on Avastin?
Replies: 6
Views: 1020

Re: Joint pain whilst on Avastin?

Hi lovely people Hope everyone is doing alright. My partner has been experiencing ankle pain intermittently over the past few weeks. I’ve read that Avastin can cause joint pain. Wondering if anyone has experienced similar and any advice to alleviate the pain? Is he only on Avastin? It depends a lot...
by Rock_Robster
Wed Jan 24, 2024 9:30 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Joint pain whilst on Avastin?
Replies: 6
Views: 1020

Re: Joint pain whilst on Avastin?

Hi lovely people Hope everyone is doing alright. My partner has been experiencing ankle pain intermittently over the past few weeks. I’ve read that Avastin can cause joint pain. Wondering if anyone has experienced similar and any advice to alleviate the pain? Is he only on Avastin? It depends a lot...
by Rock_Robster
Wed Jan 24, 2024 7:53 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: A brief modified FOLFIRI-Bev update for Gilbert’s
Replies: 0
Views: 987

A brief modified FOLFIRI-Bev update for Gilbert’s

Hi all, a few folk suggested I update when I had some info on how my new somewhat personalised protocol was going. Essentially I’m doing FOLFIRI+Bev, but modified as below: W1: 35% irinotecan, bolus fluorouracil, leucovorin, 100% bevacivzumab W2 35% irinotecan, bolus fluorouracil, leucovorin W3: Off...
by Rock_Robster
Wed Jan 24, 2024 7:16 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: What happens at the end of adjuvant therapy?
Replies: 8
Views: 1252

Re: What happens at the end of adjuvant therapy?

PS: to your question on timing, in your case provided your post-chemo scans are all clear, you are generally considered to be “NED” from the date of your surgery (not the date you finish chemo). Just one for the calendar :D wow really? that's pretty cool so in june i could potentially be 1 year NED...
by Rock_Robster
Wed Jan 24, 2024 5:27 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: What happens at the end of adjuvant therapy?
Replies: 8
Views: 1252

Re: What happens at the end of adjuvant therapy?

PS: to your question on timing, in your case provided your post-chemo scans are all clear, you are generally considered to be “NED” from the date of your surgery (not the date you finish chemo). Just one for the calendar :D
by Rock_Robster
Wed Jan 24, 2024 5:22 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: What happens at the end of adjuvant therapy?
Replies: 8
Views: 1252

Re: What happens at the end of adjuvant therapy?

Survivorship Care Plans -- Australia https://www.cancercouncil.com.au/cancer-information/living-well/after-cancer-treatment/follow-up-care/survivorship-care-plans . Survivorship Care Planning -- U.S.A. https://fightcolorectalcancer.org/living-with-colorectal-cancer/survivorship-care-planning Great ...

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