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by ginabeewell
Wed Apr 01, 2020 2:03 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: My CRC with liver mets journey
Replies: 319
Views: 54852

Re: My CRC with liver mets journey

I also had an autoimmune condition going into my cancer diagnosis. As I was trying to understand how this cancer could have possibly happened since I don't have the typical risk factors (I'm under 50 years old, active/not overweight or anything and in general, have good habits as it relates to nutr...
by ginabeewell
Tue Mar 31, 2020 7:10 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: My CRC with liver mets journey
Replies: 319
Views: 54852

Re: My CRC with liver mets journey

PET scan confirmed new activity. Chemo will restart, probably Monday assuming Dr Stein can get in touch with Dr Kemeny by then. Dr Stein says 4 rounds, then scans to assess next steps. No talk of surgery even when I asked; don’t know if that’s driven by Covid or something else. Ugh.
by ginabeewell
Mon Mar 30, 2020 2:10 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: My CRC with liver mets journey
Replies: 319
Views: 54852

Re: My CRC with liver mets journey

Gawd. You've had to deal with so much! How are other things in your life going? Are you guys all stuck in the house? Rationing toilet paper? Hang in there. I'm really glad that we started to take COVID-19 seriously at the first indication that we needed to be social distancing. We "locked down...
by ginabeewell
Mon Mar 30, 2020 12:23 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: My CRC with liver mets journey
Replies: 319
Views: 54852

Re: My CRC with liver mets journey

Ginabewell, this is super interesting, and particularly for me as I also had a positive RA test before I was diagnosed with CRC. I was having joint pain in my hands (which turned out to be tendonitis from the gym), but my doc screened for RA and I had a positive anti-CCP test, which is very specifi...
by ginabeewell
Sun Mar 29, 2020 11:36 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: My CRC with liver mets journey
Replies: 319
Views: 54852

Re: My CRC with liver mets journey

Thanks, Stu, for the info - and to everyone for the support! Ok, so here is something weird: Back in late December I started to experience aching joints and muscles. We tested for every imaginable deficiency but no luck finding anything that supplements helped. Then I went off Actigall - no change. ...
by ginabeewell
Fri Mar 27, 2020 6:03 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: My CRC with liver mets journey
Replies: 319
Views: 54852

Re: My CRC with liver mets journey

Thanks all. I didn't have the presence of mind to ask what treatment would look like - another resection? Is this small enough for radiation? I would imagine chemo in either case, but wondering if that would be before or after? Love to hear if anyone had a similar experience and how it was handled. ...
by ginabeewell
Thu Mar 26, 2020 11:17 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Likely Liver Resection Coming. Need advice please:)
Replies: 5
Views: 321

Re: Likely Liver Resection Coming. Need advice please:)

I had three surgeries - the first a colon resection / HAI pump placement; the second a liver resection where they removed 10-15% and the second a liver resection where they removed 60%. Each was progressively harder than the last. The final one really kicked my ass - but I can't tell you if that's b...
by ginabeewell
Thu Mar 26, 2020 10:35 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: My CRC with liver mets journey
Replies: 319
Views: 54852

Re: My CRC with liver mets journey

My oncologist just called. Last Friday’s scans showed two new spots. My CEA is up to 2.6 - so I guess my little freak out about it being up a few weeks ago was in fact the start of a rise. They want to do a PET scan next week but between the CT and the CEA, I think I would be surprised / suspicious ...
by ginabeewell
Tue Mar 10, 2020 11:42 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Me again, my fave topic: CEA
Replies: 19
Views: 1249

Re: Me again, my fave topic: CEA

I sometimes wish I could just tell my doc I want to do every 6 mos for cea instead of 3 months, but I’d probably worry about that choice, too Ugh! You are right, it is a measly rise. Thanks for the input, Ksue I stress about mine too. I went from 0.8 to 1.4 and freaked out for weeks stressing about...
by ginabeewell
Sun Mar 08, 2020 10:20 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Hello Again!
Replies: 6
Views: 430

Re: Hello Again!

Welcome! I’m very glad you had a doctor who followed instinct to get you diagnosed, and also glad they were able to operate so quickly. Your 6-8 week reference surprised me. I’m pretty sure I had chemo just over two weeks after my colon resection, likewise after my first liver resection. (I had comp...
by ginabeewell
Thu Mar 05, 2020 10:39 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Another clear CT!
Replies: 15
Views: 613

Re: Another clear CT!

That’s so awesome, congrats! Were you nervous leading up to it??
by ginabeewell
Fri Feb 28, 2020 11:32 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Cea on the rise
Replies: 68
Views: 4707

Re: Cea on the rise

5FU comes off today and says he actually feels better on chemo "I must be messed up" he says, in a funny way. I think that is understandable or at least I can totally relate to it. I was terrified when they told me that they did not think I should do chemo after my surgery. There is a sen...
by ginabeewell
Fri Feb 21, 2020 9:51 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Cea on the rise
Replies: 68
Views: 4707

Re: Cea on the rise

Just got confirmation: FOLFIRI starts next week but the insurance will not approve vectibix. The hits just keep coming. Ugh was so sorry to read the update. Vectibix was awful for me but it sure did a number on my mets, so I think you are right to keep pushing for it. I cannot think of why insuranc...
by ginabeewell
Sat Feb 08, 2020 2:27 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: No more chemo?
Replies: 51
Views: 4766

Re: No more chemo?

I just wanted to second Julie (BTW Juliej you rock) “Stay strong. Be persistent and keep asking questions” We have been continually shocked by the differences between doctors.... we also are searching for the ones that think outside the box! If I had worked with one of the first three oncologists I...
by ginabeewell
Mon Feb 03, 2020 9:07 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Cea on the rise
Replies: 68
Views: 4707

Re: Cea on the rise

The HAI pump may impact the liver enzymes, but it wouldn’t impact the CEA. The number you shared is definitely above the “safe” range but hard to know how to feel about it without knowing if it’s higher or lower than it has been. But 1000 does suggest there is active cancer in the body - maybe no su...

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