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by ginabeewell
Fri Oct 23, 2020 6:56 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: My CRC with liver mets journey
Replies: 375
Views: 92834

Re: My CRC with liver mets journey

Hooray! I have my next appt on Monday, will see how that goes and what they think is next for me. In other news, my hair is on its last legs. I went to a salon for a wig consult today. I tried a normal human hair Follea (sp?) wig and also a Cesare Ragazzi prosthetic hair piece. The latter was fascin...
by ginabeewell
Wed Oct 21, 2020 10:05 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: My CRC with liver mets journey
Replies: 375
Views: 92834

Re: My CRC with liver mets journey

Maybe the Peloton is working - my scan came back and it seems (?) to look good! I didn't speak with a doctor yet, but here is what it said: "No suspicious focal hepatic lesion is identified to suggest new residual metastatic disease. All the major hepatic vessels remain patent. The previously d...
by ginabeewell
Thu Oct 15, 2020 9:04 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Does chemo regimen have impact on CEA?
Replies: 2
Views: 665

Does chemo regimen have impact on CEA?

My CEA has been a very sensitive marker for me. The last time I went from 0.8 to 1.3, it was the start of my recurrence. I did 10 or so rounds of FOLFIRI + VECTIBIX and got my CEA down to 0.7 for 2 or 3 monthly tests in a row. My PET scan showed no active cancer. When I discontinued Irinotecan, the ...
by ginabeewell
Thu Oct 15, 2020 12:16 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: 3 months left of life
Replies: 31
Views: 5400

Re: 3 months left of life

Ugh, I am so sorry. Not sure what to say or how best to be helpful. I know I’ve been reading about fenben protocol, and it’s something I might choose to try if I get to the point where traditional chemo isn’t helping. What about trials? Are you eligible for anything? I hope you have someone who is s...
by ginabeewell
Wed Oct 14, 2020 5:02 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: After a year of FOLFOX, switching to FOLFIRI - hope to get to resecting liver
Replies: 14
Views: 1485

Re: After a year of FOLFOX, switching to FOLFIRI - hope to get to resecting liver

My oncologist told me my best chance of getting to resectable is if they threw the kitchen sink at me. We discussed using all the tools at once vs using them over time. The former is more of a curative approach and the latter about getting more time, at the risk of oversimplifying. I would keep push...
by ginabeewell
Wed Oct 14, 2020 12:42 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: After a year of FOLFOX, switching to FOLFIRI - hope to get to resecting liver
Replies: 14
Views: 1485

Re: After a year of FOLFOX, switching to FOLFIRI - hope to get to resecting liver

Gina, thank you so much for your response. No, no one has discussed Vectibix with me. I have never heard of it. Do you think it is something that would make sense for me to pursue? (I will google it right now) Yes, I think worth asking the question. Seems like either Vectibix or Avastin could be ad...
by ginabeewell
Mon Oct 12, 2020 8:19 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: After a year of FOLFOX, switching to FOLFIRI - hope to get to resecting liver
Replies: 14
Views: 1485

Re: After a year of FOLFOX, switching to FOLFIRI - hope to get to resecting liver

When I started, nobody thought I would ever be operable. FOLFOX and Vectibix eventually got me there. Has anyone discussed Vectibix with you yet?

Agree a consult at MSK is very worthwhile. As is a consult with a reputable / alternate surgeon. They vary significantly in how aggressive they will be.
by ginabeewell
Sat Oct 10, 2020 2:50 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Good News!
Replies: 9
Views: 1978

Re: Good News!

I agree 100% with the other posters about getting a surgical consult. Like others, have heard no cure without surgery. You need to be sure whether or not your oncologist is treating you with curative intent.

And I suspect this is why many didn’t immediately respond.
by ginabeewell
Fri Oct 09, 2020 11:37 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Does your Medtronic pump TICK?
Replies: 10
Views: 2919

Re: Does your Medtronic pump TICK?

Thank you! I’ve had my pump for over a year now, and it definitely ticks! I did call Medtronic and they said it was just the gears. Thankfully I don’t notice it much any more.
by ginabeewell
Sat Oct 03, 2020 9:37 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: I got a call to go right to the ER
Replies: 12
Views: 2754

Re: I got a call to go right to the ER

Stay calm...and remember you are a Mama and you will do what it takes to get through this for your son. I did this....many many rounds of chemo, surgery after surgery, recurrences, trying over and over to hang on for my babies. Set small goals...fight through the fear and keep going and pray....God...
by ginabeewell
Tue Sep 29, 2020 3:17 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: My CRC with liver mets journey
Replies: 375
Views: 92834

Re: My CRC with liver mets journey

This is interesting. I haven’t been able to do pump chemo since late May; which makes me wonder if that’s why she’s losing interest and not just that I’m not there live. I’ve read good things about Dr Fong; perhaps time to make a call. Thank you - I really appreciate this perspective!! Got a note b...
by ginabeewell
Mon Sep 28, 2020 1:31 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: My CRC with liver mets journey
Replies: 375
Views: 92834

Re: My CRC with liver mets journey

What I'm about to say is strictly my observation, as someone who researched a great deal about Dr. Kemeny, and eventually became her patient. And that's this: She is tireless. She is heroic. There is no one who is better with fighting liver mets. But...I've seen many, many instances where once it a...
by ginabeewell
Wed Sep 23, 2020 12:35 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: My CRC with liver mets journey
Replies: 375
Views: 92834

Re: My CRC with liver mets journey

Btw thank you for the tips on icing the face during vectibix to keep the breakouts down. That's so smart of you. I remember putting ice on my forehead for fever during Erbitux a while ago and my forehead had visibly less breakouts, but I didn't think about the correlation between ice and breakouts ...
by ginabeewell
Sun Sep 20, 2020 7:09 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Blood clots and low oxygen and hospice OH MY
Replies: 44
Views: 6458

Re: Blood clots and low oxygen and hospice OH MY

I’m so sorry, what a true loss. Will be thinking of you and the kids. And yes we will be here for you for anything we can do to support you, whenever you need us.
by ginabeewell
Tue Sep 15, 2020 10:38 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: To my CC family
Replies: 21
Views: 2896

Re: To my CC family

I am so sorry to read this. It is so unfair.

Sending all my best to you and your family - that you may have the strength and grace to keep moving forward. We will be here for you, please come back as you find you need us.

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