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by rachelfromnyc
Sun Sep 20, 2020 9:43 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Blood clots and low oxygen and hospice OH MY
Replies: 41
Views: 3241

Re: Blood clots and low oxygen and hospice OH MY

Really sorry to hear your news, Mohrfamily. Sending you good energy... you're in my thoughts.
by rachelfromnyc
Sat Sep 19, 2020 2:29 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Surgery or no?
Replies: 10
Views: 710

Re: Surgery or no?

I had the consult and it's a go with the surgery! I'm so glad, I've wanted this thing out of me since diagnosis. Now over one year and two consecutive stable scans later, I'm finally able to get the primary out. It will be an open surgery in which the surgeon will take out anything else he sees as c...
by rachelfromnyc
Fri Sep 11, 2020 11:46 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Surgery or no?
Replies: 10
Views: 710

Re: Surgery or no?

Hi Lee and beach sunrise, thanks for your response. The surgeon I'm seeing next week is board certified so I feel good about that. To expand a bit on chemo for life, I have a lot of lymph node/distant lymph node involvement. The ones in my neck were biopsied and found positive. None in other locatio...
by rachelfromnyc
Thu Sep 10, 2020 1:52 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Surgery or no?
Replies: 10
Views: 710

Surgery or no?

Looking for thoughts on my current situation. To recap, my long term treatment plan is to do chemotherapy for life and that’s all I’ve had since diagnosis. I still have the primary tumor, lymph nodes and lung nodules. My scan from June showed everything stable except some lymph nodes. My latest scan...
by rachelfromnyc
Fri Aug 14, 2020 9:44 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Complementary opinions
Replies: 7
Views: 1878

Re: Complementary opinions

Hi beach sunrise, Wanted to let you know that after reading your initial messages, I went ahead and contacted Lexington Natural Health for an appointment. Looks like I got in ahead of you (I was there yesterday). I had a phone consult a couple of days before that and my main purpose in coming in was...
by rachelfromnyc
Tue Jul 28, 2020 12:58 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Can I get some comparison for my sanity?
Replies: 3
Views: 588

Re: Can I get some comparison for my sanity?

Hi Monimom, My treatments are also palliative in nature so sharing with you my experience. My doctor hasn't referred to it as "maintenance" but the idea is to stretch out the amount of time that the chemo is working and as long as disease is stable/not growing or tumors are shrinking, she'...
by rachelfromnyc
Fri Jul 10, 2020 10:23 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Complementary opinions
Replies: 7
Views: 1878

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: 2331

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: 2331

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: 2331

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: 2331

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: 620

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: 2331

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: 2331

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: 2331

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...

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