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by Rock_Robster
Sun Sep 06, 2020 6:15 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Inflammatory lesions on PET
Replies: 2
Views: 532

Re: Inflammatory lesions on PET

I haven’t had this exact situation but I can understand your onc’s position. Uptake is borderline and it’s in an atypical location for a CRC met, and you did (what I’d consider) strenuous exercise the day prior heavily emphasising that side of your body (assuming you’re right-handed). So definitely ...
by Rock_Robster
Wed Sep 02, 2020 9:28 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Silly Question
Replies: 17
Views: 3863

Re: Silly Question

I received a bracelet but I’ve never worn it; very few medics here would be port access trained, and to be honest I don’t think I’d want them messing with it in a non-sterile field setting anyway. I was a volunteer EMT and we would never touch a port for IV access. Carrying the card in your wallet i...
by Rock_Robster
Wed Sep 02, 2020 9:23 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: My first Avastin treatment.
Replies: 7
Views: 934

Re: My first Avastin treatment.

Avastin typically has very mild side effects when compared to cytotoxic chemotherapy. Many people report none at all; others might experience increased minor spontaneous bleeding like nosebleeds or bleeding gums after brushing. Some nausea and increased fatigue is also not uncommon. A very small pro...
by Rock_Robster
Sun Aug 23, 2020 1:14 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: How to Find a Good Oncologist
Replies: 1
Views: 475

Re: How to Find a Good Oncologist

I’m sorry about the latest news, but great idea to bring in the big guns now! I don’t have a specific oncologist recommendation but when in doubt it never hurts to start with an NCI-designated cancer centre. Depending on where you are in Oregon this could be: Knight Cancer Institute Oregon Health an...
by Rock_Robster
Sat Aug 22, 2020 3:35 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: PSK supplements
Replies: 10
Views: 1672

Re: PSK supplements

Good to know. Thanks Rob! I have a question: Since you use the powdered type, how do you take it? In coffee or what? I ordered powder for the 1st time the other day. It says you can put in beverages. Then I read it could leave a sediment at bottom? Hi beach sunrise, I’m a simple person so I either ...
by Rock_Robster
Fri Aug 21, 2020 5:58 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: PSK supplements
Replies: 10
Views: 1672

Re: PSK supplements

Thanks, I just had a tub of Turkey Tail powder delivered by iHerb; will keep an eye on that one! If people are looking around they seem to be ok at the moment.
by Rock_Robster
Fri Aug 21, 2020 2:40 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: a big question about the Avastin dosage ... help me please
Replies: 3
Views: 1145

Re: a big question about the Avastin dosage ... help me please

Ok great, so the Avastin dose looks right - he’s getting 7.5 mg per kg of body weight (rounded up to 600 mg), every 3 weeks. The Xeloda dosing is based on body surface area (BSA), and from his height and weight his BSA is around 1.8 m2. A standard dose is often 1250 mg/m2 twice daily. In his case, t...
by Rock_Robster
Wed Aug 19, 2020 7:40 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: a big question about the Avastin dosage ... help me please
Replies: 3
Views: 1145

Re: a big question about the Avastin dosage ... help me please

Firstly, doses are not necessarily different between curative and palliative treatment. They can be, but these terms generally refer to the intent of the treatment, not the protocol itself. Of course palliative patients may choose to go for a lower dose, but this isn’t automatic. The only way to be ...
by Rock_Robster
Sat Aug 01, 2020 9:49 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: When to do the HAI Pump?
Replies: 4
Views: 971

Re: When to do the HAI Pump?

I’m also not HAI myself as I’m not in the US, but from everything I’ve observed I think the best answer is “as soon as a reputable hospital would be prepared to offer you one”.
by Rock_Robster
Sun Jul 19, 2020 9:14 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Pathology report - some good news, also unexpressed MSH6
Replies: 11
Views: 1272

Re: Pathology report - some good news, also unexpressed MSH6

Hi. I second what CRguy said: colon cancer can bypass the liver and go straight to the lungs. Yes, it's less likely to act this way and yes, rectal cancers tend to do this more often than cancers in the colon. But don't forget this wise observation: "Cancer does whatever it wants." As for...
by Rock_Robster
Wed Jul 01, 2020 8:19 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Possible Liver Met
Replies: 3
Views: 675

Re: Possible Liver Met

Hey mate, I agree it could definitely be something else (I had several benign cysts), but also agree 3 months is too long to wait to find out. If it is a met, one small one with prompt treatment can still have a good prognosis. I’d be pushing for a PET now - it’s an absolutely appropriate modality f...
by Rock_Robster
Tue Jun 30, 2020 9:41 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Not DX yet - Which questions should I ask my doctor?
Replies: 15
Views: 1538

Re: Not DX yet - Which questions should I ask my doctor?

Hi JC, welcome; sorry you have to be here, but glad you found us. Firstly although it may not feel like it, your post above is definitely trending toward ‘good’ news. With colorectal cancer, even a locally advanced adenocarcinoma (with or without lymph node involvement) is a very different animal co...
by Rock_Robster
Mon Jun 29, 2020 12:31 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Coloplast SenSura Mio Click Two-Piece Closed Pouch 6211413
Replies: 8
Views: 870

Re: Coloplast SenSura Mio Click Two-Piece Closed Pouch 6211413

Rock did you get the vertical stealth or the one that you have to move your bag horizontal? How are you doing Rock since Ileo reversal? Glad to see your 6 months scans are good as well. I am debating getting the stealth belt. I just want to conceal it a bit more, just this particular bag brand stic...
by Rock_Robster
Sat Jun 27, 2020 11:11 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Coloplast SenSura Mio Click Two-Piece Closed Pouch 6211413
Replies: 8
Views: 870

Re: Coloplast SenSura Mio Click Two-Piece Closed Pouch 6211413

I assuming on the ostomy wraps you wear it only when your going out? Doesn't it feel constricting when your stoma is going to be active obviously this is unpredictable, so how do you work around that? I think I wrap is a good idea as well. I just don't want the thing to show lol. I wore the stealth...
by Rock_Robster
Fri Jun 26, 2020 2:56 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Coloplast SenSura Mio Click Two-Piece Closed Pouch 6211413
Replies: 8
Views: 870

Re: Coloplast SenSura Mio Click Two-Piece Closed Pouch 6211413

Stealth Belt!

www.stealthbelt.com

I used to use the one-piece system of this pouch. Great product but yes it does need a wrap or belt or similar.

Good luck,
Rob

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