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by MetastaticEquilibria
Tue Oct 29, 2019 7:03 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Please allow me to introduce myself
Replies: 36
Views: 5699

Re: Please allow me to introduce myself

A quick update on my situation: Folfiri+Cyramza ended up not working out. To keep my platelets and neutrophils above chemo threshold required lowering the dose so much that it stopped working on the tumors. To pile on the good news, I ended up hospitalized again with jaundice due to bile duct blocka...
by MetastaticEquilibria
Tue Oct 29, 2019 1:17 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Question- how do you count years of survival?
Replies: 22
Views: 1819

Re: Question- how do you count years of survival?

I consider myself still in the trenches and running out of bullets. Which admittedly makes for a much less marketable t-shirt than one that proclaims “Survivor!” :wink: https://www.districtlines.com/18717-A-Smile-From-The-Trenches-T-Shirt/A-Smile-From-The-Trenches It looks like your CEA levels are ...
by MetastaticEquilibria
Mon Oct 28, 2019 3:32 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Question- how do you count years of survival?
Replies: 22
Views: 1819

Re: Question- how do you count years of survival?

It has been almost 3 years since diagnosis, but I don’t consider myself a survivor, since, barring a miracle, I most likely will not survive this whole thing. I consider myself still in the trenches and running out of bullets. Which admittedly makes for a much less marketable t-shirt than one that p...
by MetastaticEquilibria
Sun Oct 06, 2019 6:14 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Scared of surgery in need of wisdom...
Replies: 24
Views: 3175

Re: Scared of surgery in need of wisdom...

One thing that helped me (as others have said) was to think about how lucky I was to be a candidate for surgery. Yes, I would kill to be eligible for surgery. Well, maybe not actually kill, but I would certainly be willing to write a sternly worded letter to the editor. Don’t think I wouldn’t!
by MetastaticEquilibria
Fri Sep 13, 2019 6:20 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Vectibix side effects
Replies: 13
Views: 1738

Re: Vectibix side effects

I’ve been on Vectibix. (Panitumumab is the generic name for it — it’s the same stuff.) I don’t have a beard, but my scalp drove me crazy. Would wake up every morning with blood on the pillow. Plus face, chest, back, stomach, arms, legs... Maybe the worst was the skin around the toenails getting infl...
by MetastaticEquilibria
Mon Sep 09, 2019 11:41 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: oxaliplatin side effects - 9 years after treatment
Replies: 38
Views: 10530

Re: oxaliplatin side effects - 9 years after treatment

I am over a year since having to stop oxaliplatin, and feet still feel cold and half numb. Hot water helps — a really hot bath, even just a foot bath, makes them feel a bit better for a while. Hiking or other exercise helps, too. Anything to get the blood flowing, I guess.
by MetastaticEquilibria
Sun Sep 08, 2019 3:33 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Treatment at MSK
Replies: 25
Views: 2868

Re: Treatment at MSK

It might be a good idea to look into eligibility for the Rotterdam trial while waiting to see MSK, so you have full information on whether that fall-back option exists or not. You may need to make a decision in a hurry by the time you see MSK.
by MetastaticEquilibria
Sun Sep 08, 2019 2:13 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Quick intro -- diagnosed Friday
Replies: 147
Views: 23068

Re: Quick intro -- diagnosed Friday

I've heard that taking B vitamins during chemo can reduce neuropathy, thoughts if it's 100% safe? The B-group is strictly out by my onc as they are strong antioxidants. Interesting. I had understood that B12 is not an antioxidant, as stated here, for example: https://www.uhn.ca/PatientsFamilies/Hea...
by MetastaticEquilibria
Sun Sep 08, 2019 1:52 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Treatment at MSK
Replies: 25
Views: 2868

Re: Treatment at MSK

It’s a great question Alexandra, as another non-US’er I’ve been wondering that myself too. I’ve worked on the assumption - with very little basis - of at least $100k all-in for the HAI treatment, maybe more like $200k with surgeries. I found one site that quoted typical liver surgery cost in the ra...
by MetastaticEquilibria
Fri Sep 06, 2019 8:57 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Side effect question.
Replies: 7
Views: 986

Re: Side effect question.

I’ve had oxaliplatin and a bunch of other stuff, and my core body temperature seems to have permanently dropped. I used to be a furnace, with typical temp of 37 degrees or above when healthy. Now I’m at 35.5 when waking up, and never go above 37 unless I have a fever. Also feel colder in general. I ...
by MetastaticEquilibria
Wed Aug 28, 2019 9:49 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Different treatment in Germany
Replies: 22
Views: 2095

Re: Different treatment in Germany

My source in regards to Carbon-Ion not being available in the USA is a pretty seasoned Radiation Oncologist. You can look him up, Dr. Marc Apple. He has been doing this for a long time and mentioned to me that Carbon-Ion is the way to go, extremely targeted method of killing tumors. He mentioned Ge...
by MetastaticEquilibria
Wed Aug 28, 2019 7:12 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: My Sister is talking to my bf behind my back
Replies: 3
Views: 947

Re: My Sister is talking to my bf behind my back

I’ve felt that feeling of “betrayal,” not so much with loved ones, but at work with regard to colleagues who I know are trying to help me out with no intention of betrayal. I recognize it as an (unfair) response on my part to a feeling of loss of control. The feeling of loss of control is definitely...
by MetastaticEquilibria
Tue Aug 27, 2019 6:38 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Quick intro -- diagnosed Friday
Replies: 147
Views: 23068

Re: Quick intro -- diagnosed Friday

NHMike wrote:The port can be used to draw blood as they draw blood before every infusion


Minor point, but not all ports are designed to backflow. Mine isn’t, for example. Useful information to know if it needs to get accessed at a different hospital than the one that put it in.
by MetastaticEquilibria
Mon Aug 26, 2019 4:56 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Different treatment in Germany
Replies: 22
Views: 2095

Re: Different treatment in Germany

Hi again, I don't know if I am msi high or not. I did all genetic testing in Ireland, I think they only tested for the most common genetics. I was negative on all of them. But I will ask my doctor when I get a chance. Which immunotherapies are you thinking of? Thanks! If you are MSI high, or are no...
by MetastaticEquilibria
Mon Aug 26, 2019 3:08 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Different treatment in Germany
Replies: 22
Views: 2095

Re: Different treatment in Germany

Hi metastastic equlibrimia, I was diagnosed with stage iv colon cancer 2015. I have about 20 lung metastases. I have done some of the standard chemotherapies. Starting oxiplatin today. They say that they cant operate on my tumors. So ofcourse I am looking for alternative. I am only 50 years Old ( s...

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