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by Rock_Robster
Fri May 22, 2020 8:56 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: New to the club we never wanted to join...
Replies: 7
Views: 672

Re: New to the club we never wanted to join...

I can share a bit of my experience on the fertility side. I was diagnosed with stage 4 rectal cancer at 36 years old. Before I started treatment I froze some sperm, and then had chemotherapy, pelvic radiation, and several surgeries. After I finished treatment earlier this year, I did a semen analysi...
by Rock_Robster
Fri May 22, 2020 9:25 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: when CEA is not a good indicator.
Replies: 4
Views: 314

Re: when CEA is not a good indicator.

My presurgery CEA was 1.2. My oncologist said that she did not think CEA would be a good indicator for me because I had a pretty hefty cancer load at that time. She is, however, continuing to monitor my levels. February 23=1.2 March 25=0.6 April 27=.9 May 20=1.5 Tuesday, I go in for my 5th FolFox c...
by Rock_Robster
Wed May 20, 2020 10:04 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: All Chemo's have stopped working
Replies: 8
Views: 623

Re: All Chemo's have stopped working

I agree that at this stage, long-term stability is more likely to be achieved via targeted radical treatments like SBRT/SABR and/or local resections or ablations. Has she had a referral either to a specialist thoracic surgeon (for the lung), and a radiation oncologist (for the brain)? I do know of s...
by Rock_Robster
Sun May 17, 2020 4:49 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Update - new to the club
Replies: 2
Views: 376

Re: Update - new to the club

Hi Readerokie, Sorry to hear your news, but glad you’ve found the group. 3b is clearly intimidating and the treatments objectively unpleasant, but also good to know the stats are still squarely on your side. Indeed cancer treatment can be rough on fertility. My main advice would be to freeze some sp...
by Rock_Robster
Thu May 14, 2020 4:36 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Surveillance Plan Questions
Replies: 14
Views: 1048

Re: Surveillance Plan Questions

Also I should add just for background: - the dedicated liver MRIs are a bit unusual (and arguably excessive in most cases - they’re expensive and time consuming). They’re just there because I had a met that was missed on CT but caught on MRI. - doing two PETs a year is also arguably excessive from a...
by Rock_Robster
Thu May 14, 2020 4:33 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Surveillance Plan Questions
Replies: 14
Views: 1048

Re: Surveillance Plan Questions

Thank you so much, Rob!!! I just put your surveillance plan in my notes. Are you under onc or surgeon? I'm thinking I might request to be under surgeon. No worries at all. My onc runs the plan, the liver surgeon checks the liver MRIs, and my colorectal surgeon does the scopes. The colorectal surgeo...
by Rock_Robster
Wed May 13, 2020 9:48 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Surveillance Plan Questions
Replies: 14
Views: 1048

Re: Surveillance Plan Questions

Hey beach sunrise, the others have given great advice so I’ll just give you details of my surveillance plan for reference: For the first 2-3 years: - quarterly scans alternating CT and PET - quarterly liver MRI (my liver has been an issue and doesn’t image well on CT) - quarterly bloods - CEA and CA...
by Rock_Robster
Mon May 04, 2020 4:51 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: looking for advice on recent stage IV diagnosis
Replies: 2
Views: 884

Re: looking for advice on recent stage IV diagnosis

Hi, I’m sorry for the diagnosis and all the recent stress. It’s good that they’re being cautious, but medically I was always taught “when you hear hoof beats think horses, not zebras”. Under the circumstances it’s far more likely to be CRC metastasis (and hopefully a treatable one); but good to know...
by Rock_Robster
Sat May 02, 2020 2:31 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Xeloda dosing and newbie questions. Please help
Replies: 15
Views: 1198

Re: Xeloda dosing and newbie questions. Please help

Your mom could contact her oncologist on Monday to seek clarification on these two issues: 1. Why did the oncologist recommend Xeloda dosing at half the protocol-recommended level during neoadjuvant chemo/radiation? He should be able to explain his rationale for doing this. Normally the low 50% dos...
by Rock_Robster
Tue Apr 21, 2020 7:43 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Hello, I'm new here
Replies: 22
Views: 2074

Re: Hello, I'm new here

I also had Neulasta with my last 3-4 cycles; it worked great and sent my neutrophils and WBCs soaring. I definitely had some bone pain - apparently the majority of your white blood cells are produced in your spine, ribs and hips which is definitely where I felt it. It wasn’t super bad; I just felt l...
by Rock_Robster
Thu Apr 16, 2020 4:23 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: BM incontinence
Replies: 4
Views: 627

Re: BM incontinence

Hey billy, I also had radiation and chemo, plus a rectal resection. I found switching to decaf coffee reduced my issues by at least 50% (probably closer to 75% if I dropped coffee completely, but I’m mentally addicted :) ). I also take an Imodium before each meal, and a fibre supplement twice a day....
by Rock_Robster
Mon Apr 13, 2020 4:41 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: 5FU dosage in adjuvant chemo
Replies: 21
Views: 1824

Re: 5FU dosage in adjuvant chemo

I have another question that keeps nagging at me and confused. In my sig I listed MHL1+ and the other3. Path report says for them out beside MHL1 "expressed in tumor" (positive) and same exact wording for the others listed in sig. What does that really mean. I tried to find those exact wo...
by Rock_Robster
Sat Apr 11, 2020 11:36 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: 5FU dosage in adjuvant chemo
Replies: 21
Views: 1824

Re: 5FU dosage in adjuvant chemo

You guys are awesome! I have been going for IV vit c and Meyers cocktails so really wanted to make sure I have the timing right. I would love to get vitc during treatment as it makes me feel so good but don't want to interfere with chemo. No worries! I understand. Perhaps check this with you oncolo...
by Rock_Robster
Sat Apr 11, 2020 2:37 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: 5FU dosage in adjuvant chemo
Replies: 21
Views: 1824

Re: 5FU dosage in adjuvant chemo

beach sunrise wrote:Yes, clear the body I guess is what I mean. Thank you so much!

No worries! From a safety perspective I was told to take precautions for 48 hours after the last dose.

Cheers,
Rob
by Rock_Robster
Fri Apr 10, 2020 8:07 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: 5FU dosage in adjuvant chemo
Replies: 21
Views: 1824

Re: 5FU dosage in adjuvant chemo

Do you guys know how long the oxa and 5FU keep working to kill cancer after disconnect? I can't find a definite answer on the net. I have found a round about answer of hours is all. I think it depends a bit on your definition of “kill cancer” here. Both drugs clear the body quite fast (half-lives o...

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