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by ginabeewell
Wed Sep 18, 2019 1:17 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Treatment at MSK
Replies: 23
Views: 1147

Re: Treatment at MSK

Thanks for the data, both of you! We don't have any experience with oxaliplatin, but it sounds pretty rough whereas FUDR seems to have few side effects with the HAI pump. I think we'll start at MSK and see what they say. We are by no means rich, but we are young and we have the rest of our lives to...
by ginabeewell
Mon Sep 16, 2019 11:27 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Screw Cancer, Hospice is Here
Replies: 19
Views: 688

Re: Screw Cancer, Hospice is Here

I sighed deeply reading this, but am glad it seems your head is in a good place and you have solid plans to enjoy this next phase of life. You should sit on as many beaches as possible, in my opinion. You’ve been a source of much wisdom for me since I first came here a year ago - and continue to be....
by ginabeewell
Sun Sep 15, 2019 7:44 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: What Helped You Make It Through Folfox Cycles 6-8
Replies: 11
Views: 239

Re: What Helped You Make It Through Folfox Cycles 6-8

My neuropathy started to not “snap back” at about eight doses too. Dr K took me off of it and wouldn’t put me back even when I asked! I did wind up with a chemo break after 5. Not intentionally, but I had an infection and needed 7 weeks to heal. I was in bad shape between the chemo and the infection...
by ginabeewell
Fri Sep 13, 2019 11:58 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: ...progression...
Replies: 27
Views: 2798

Re: ...progression...

I'm sure I know but can't quite remember but what kind of side effects does one have after HAI placement? What are the chances that they will resect (the colon) during that surgery? They did resect my colon when they placed the pump. I think they often try to do this. Obviously my liver wasn't read...
by ginabeewell
Thu Sep 12, 2019 9:22 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Cancer households should not have to deal with lice
Replies: 13
Views: 446

Re: Cancer households should not have to deal with lice

I'd be tempted to burn everything to the ground. :lol: I'm pretty pissy for some unknown reason and I'm about to go angry clean under my couch. I can at least be thankful I'm not dealing with bugs. I'm so sorry that you are! You’re pissy - maybe because you just had surgery?! Taking a card from my ...
by ginabeewell
Thu Sep 12, 2019 2:02 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Cancer households should not have to deal with lice
Replies: 13
Views: 446

Re: Cancer households should not have to deal with lice

I'd guess that lice wouldn't touch someone on Chemo. You would think that, wouldn't you? Unfortunately Google revealed otherwise. So far, I seem to not have contracted anything, but I have four kids in the house and everyone uses our hairbrushes / lounges in our bed / etc. And honestly treating the...
by ginabeewell
Wed Sep 11, 2019 10:53 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Cancer households should not have to deal with lice
Replies: 13
Views: 446

Cancer households should not have to deal with lice

I feel very, very strongly about this.

I cannot understand why the lice bugs are not aligned.

It really, really, really does not seem fair. DON'T WE HAVE ENOUGH HAIR PROBLEMS???

This is all.
by ginabeewell
Tue Sep 10, 2019 8:07 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Rogaine! seems to be working for me
Replies: 10
Views: 549

Re: Rogaine! seems to be working for me

Okay, my situation was different, stage III, FOLFOX only. My hair turned a complete FRIZZY. thinner yes, but frizzy "big time". My pre teen daughter was a bit embarrassed tp be seem with me. Mine has thinned AND is getting frizzy. When I wake up in the morning I look just like Albert Eins...
by ginabeewell
Sun Sep 08, 2019 9:48 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Treatment at MSK
Replies: 23
Views: 1147

Re: Treatment at MSK

The other question I’ve been trying to work out is around logistics. Hopefully someone can correct me here, but I understand the initial course of HAI treatment runs for 6 months, and then the pump is left in for 2 years? So this would mean living in the vicinity of NYC for somewhere between 6-24 m...
by ginabeewell
Fri Sep 06, 2019 3:56 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: My CRC with liver mets journey
Replies: 218
Views: 32708

Re: My CRC with liver mets journey

Great! I'm so happy to hear that. Your success as well as Juliej's makes me really want to go to MSK and Dr Kemeny with my boyfriend. They seem to have great success with young and otherwise healthy patients. I hope you start a blog! I'd be happy to follow you. You totally should! And sooner vs lat...
by ginabeewell
Fri Sep 06, 2019 12:32 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Rogaine! seems to be working for me
Replies: 10
Views: 549

Re: Rogaine! seems to be working for me

I know!!! I was going to suggest it to my husband but now I think we're just going to wait and see. I've gotten quite used to seeing him with thin (but so soft!) hair and beard anyway... I am not sure whether this is true or not. I think the "rest of your life" applies to people who are l...
by ginabeewell
Fri Sep 06, 2019 11:44 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Rogaine! seems to be working for me
Replies: 10
Views: 549

Re: Rogaine! seems to be working for me

I found this article, which seems to indicate that once you start Rogaine, you have to take it for the rest of your life. Something to be aware of! http://herwaroncancer.com/taxotere/side-effects/can-chemo-hair-loss-cured/ Rest of your life, what?? Um, that’s a pretty significant drawback, WTF? Cle...
by ginabeewell
Fri Sep 06, 2019 10:07 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Rogaine! seems to be working for me
Replies: 10
Views: 549

Rogaine! seems to be working for me

I read an article somewhere along the line that suggested that Rogaine actually worked to grow or maintain hair in patients who were going through chemo. I figured it was worth a shot and bought the generic version to try out. I started in early July, about the same time that I was on a chemo break ...
by ginabeewell
Fri Sep 06, 2019 9:52 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: My CRC with liver mets journey
Replies: 218
Views: 32708

Re: My CRC with liver mets journey

How is it going? :) I've been following this thread and would love to hear how you are doing, Gina! Thanks for asking! I have been doing really well. I feel almost completely healed from my liver resection at this point - I guess I am 7 weeks out at this point? Part of my incision scar still feels ...
by ginabeewell
Thu Sep 05, 2019 10:22 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Best clinical trial(s) - stage 4 w liver mets
Replies: 9
Views: 490

Re: Best clinical trial(s) - stage 4 w liver mets

Rock_Robster wrote:And I think the HAI trial at NIH still has places too?


Yes - the place I read about it mentioned that there were plenty of slots open and they were happy to open additional ones if more patients apply.

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