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by rachelfromnyc
Fri Jul 10, 2020 10:23 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Complementary opinions
Replies: 4
Views: 328

Re: Complementary opinions

Were you able to do a consult with them? I am also interested in complementary therapies as I undergo chemo so definitely interested in your thoughts/experience with this practioner. Thanks!
by rachelfromnyc
Fri Jul 10, 2020 10:16 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Update (treatments & CEA)
Replies: 19
Views: 1714

Re: Update (treatments & CEA)

Thanks for chiming in, Cured, about the 5FU question as well as sharing some of the things you're doing. I agree with being in touch with one's body and keeping healthy to beat the disease. I know that I'll have to take a break at some point to allow for healing of the immune system. But I have to g...
by rachelfromnyc
Sun Jul 05, 2020 12:38 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Update (treatments & CEA)
Replies: 19
Views: 1714

Re: Update (treatments & CEA)

Hi Rachel! Thanks for the update. Been thinking about you lately! My boyfriend had the WORST reflux on FOLFIRI. Mainly around the treatment days. FOLFIRI really does a number on any mucous membranes and guess what, that's the entire digestive tract. :shock: My boyfriend got some relief from aloe ve...
by rachelfromnyc
Fri Jul 03, 2020 3:46 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Update (treatments & CEA)
Replies: 19
Views: 1714

Re: Update (treatments & CEA)

Definitely agree with you radnyc. I've been following that thread with great interest for sure. My TMB is 7.9 but there was mention of having it redone to see if it was affected by chemo. Regardless, it's on my list of things to ask when I see my doctor next.
by rachelfromnyc
Tue Jun 30, 2020 5:06 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Update (treatments & CEA)
Replies: 19
Views: 1714

Re: Update (treatments & CEA)

Thanks roadrunner, everything you said is useful. I'm coming to the conclusion that I have to go back on 5FU. It's been more difficult because the more treatments I have, the longer it takes for me to bounce back and the more days I feel awful. But if I have to, I'll do it. And yes, it was working f...
by rachelfromnyc
Tue Jun 30, 2020 3:30 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: PET scan after CEA rise...
Replies: 4
Views: 398

Re: PET scan after CEA rise...

Hi Monimom- I don't have experience with Panitumumab but know that it's somewhere down the line for me. My oncologist explained that side effects are worse, as others have described, and therefore she's holding onto it until needed. Regarding your husband's liver tumors, is he on avastin currently l...
by rachelfromnyc
Tue Jun 30, 2020 12:39 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Update (treatments & CEA)
Replies: 19
Views: 1714

Re: Update (treatments & CEA)

Ouch that sounds miserable - and very stressful. My husband was on Omeprazole nonstop while doing Folfiri + Avastin; without it, he would get awful gastric reflux and heartburn. He's off now, still has some gastric issues but they could be related to wearing a tight corset 24/7 and/or taking aspiri...
by rachelfromnyc
Tue Jun 30, 2020 7:58 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Update (treatments & CEA)
Replies: 19
Views: 1714

Re: Update (treatments & CEA)

Hi everyone and thanks for your support. A few things have happened since so here is another update. CEA continues to rise so it's been four in a row of that trend. The latest from last week is even higher than when I was first diagnosed and before I started any treatments. I also had my scan last w...
by rachelfromnyc
Fri Jun 05, 2020 5:15 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Update (treatments & CEA)
Replies: 19
Views: 1714

Update (treatments & CEA)

Hi everyone, I’ve been unable to sleep all night, having a lot of thoughts mostly about CEA. Plus I’ve got this 5FU bottle attached to me right now so that’s not helping. I’ve read a lot of old posts about CEA but wanted to share my specific situation to get feedback on not only that but also my tre...
by rachelfromnyc
Sun Apr 19, 2020 12:12 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Cycling seats post radiation treatment
Replies: 12
Views: 2125

Re: Cycling seats post radiation treatment

That's very interesting info Rachel! There seem to be several Diva models - which one are you using? My husband and I have been riding regularly (that's the one form of exercise he really enjoys and that his body can tolerate). I have very little "butt padding" so no matter how good a cha...
by rachelfromnyc
Thu Apr 09, 2020 12:10 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Cycling seats post radiation treatment
Replies: 12
Views: 2125

Re: Cycling seats post radiation treatment

Hi Lakeswim, I've never had radiation but wanted to weigh in anyway. When I got a new roadbike a couple years back, the first thing I upgraded was the seat. The one it came with was meant for racing so it sacrified comfort for performance. I went with a saddle from Selle Italia (Diva). It's designed...
by rachelfromnyc
Thu Apr 09, 2020 11:50 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: One year anniversary and now delayed surveillance
Replies: 15
Views: 2778

Re: One year anniversary and now delayed surveillance

Hi Punky, Wanted to share what they're doing at my cancer center. I showed up for my regularly scheduled 3 month scan in March right around the time the pandemic was escalating. I was surprised to be the only person in this huge waiting room that is usually full. I asked the front desk about it and ...
by rachelfromnyc
Thu Apr 09, 2020 10:58 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: My CRC with liver mets journey
Replies: 344
Views: 73410

Re: My CRC with liver mets journey

If it IS paraneoplastic syndrome, the RA would go away or resolve with effective cancer treatment. Is that what you experienced or are you still feeling symptoms? It's lupus that I have. Once I was put on medication, the symptoms went away and I was rolling along happily until the cancer diagnosis....
by rachelfromnyc
Wed Apr 01, 2020 12:17 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: My CRC with liver mets journey
Replies: 344
Views: 73410

Re: My CRC with liver mets journey

That’s the same test that was positive for me: the anti-CCP test. The RA screen was negative. So you may have experienced the same thing: your body mounting an immune system response to early stage colon cancer. Oh also I read that MRI would be negative for RA in a case like this. Crazy right?! But...
by rachelfromnyc
Wed Feb 26, 2020 1:09 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: No more chemo?
Replies: 51
Views: 6873

Re: No more chemo?

We FINALLY got an answer from MSK! Jesper is approved for an on-site appointment. Now we just need to figure out how to fit it in time-wise. I feel like he's been off chemo long enough! I'd rather give him a bit of FOLFIRI and then do the second opinion during a chemo break. I'll definitely let you...

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