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Re: Rectal Cancer: Habr-Gama Watch and Wait Strategy to Avoid Surgery

Posted: Sun Apr 21, 2019 12:00 pm
by nifty624
Oops! I am glad to hear that yur first Xelox went well JOLENE!

Re: Rectal Cancer: Habr-Gama Watch and Wait Strategy to Avoid Surgery

Posted: Mon Apr 22, 2019 8:31 am
by Jolene
weisssoccermom wrote:Mine had no issue...I believe because the standard of care protocol calls for testing every 3 - 6 months even following traditional methods. The only time my insurance pitched a fit was at after my 5 year mark. They didn't want to pay for the CT scan. Instead they told me that I could have a chest x-ray and IF it showed something, then they would pay for a CT scan. Other than that, no issues here. That being said, insurance companies don't consider the follow up testing to be 'routine'. They paid for it but I had to pay our deductible first and then I had a 10% copay amount. We had double coverage so for me, I had nothing.


Hi Weiss ! Thanks ! True that standard of care protocol calls for testing every 3-6 months, however the frequency wanes after 2-3 years for a standard of care. WW-ers gotta hang in there for 5 years and our frequency of testing is much higher than the standard ones and that's what I'm concerned about - whether the insurance company is going to balk at some point after receiving at least 3 sets of MRI / flex sig / CT scans etc.. billings per year over a few years.

Good to know that you have gone through the claims for at last 5 years. What were the reason they gave after the 5 year mark for not paying the CT scan ?

The deductibles and 10% co-payment works quite similarly to ours. I had a rider on top of a main insurance and hence have not paid anything so far.

Re: Rectal Cancer: Habr-Gama Watch and Wait Strategy to Avoid Surgery

Posted: Mon Apr 22, 2019 8:48 am
by Jolene
Hey Nifty - was just thinking about you and wondered if you started Chemo !

Congrats on the good pathology news ! What's your WW surveillance arrangement with your team like ?

My mum had a port installed herself a few years back due to colon cancer and she appreciated it. Like you, they often couldn't get a good vein out of her and she was sick of being pricked repeatedly for all sort of blood work and infusions. The fact that she was on 12 cycles of Folfox warrants it even more !

I'm wondering how do the doctors decide between FOLFOX or XELOX for ww patients ! Were you offered XELOX at all ?

My arm is no longer aching, the ache went away around day 4/5 but that was also the time when I felt the most exhausted when the steroid weans off. It's day 12 of my very first cycle and I'm starting to feel mild tingling on my palms. I guessed its coming !!!

Re: Rectal Cancer: Habr-Gama Watch and Wait Strategy to Avoid Surgery

Posted: Mon Apr 22, 2019 8:57 am
by weisssoccermom
As I said, mine ONLY got tricky with the CT after 5 years....otherwise, I was getting CT's every 6 months (same as standard protocol) in years 3,4 and into 5 with flex sigs on the same schedule. NO issues with me.

Re: Rectal Cancer: Habr-Gama Watch and Wait Strategy to Avoid Surgery

Posted: Mon Apr 22, 2019 12:24 pm
by prs
Jolene wrote:My arm is no longer aching, the ache went away around day 4/5 but that was also the time when I felt the most exhausted when the steroid weans off. It's day 12 of my very first cycle and I'm starting to feel mild tingling on my palms. I guessed its coming !!!

Hi Jolene, the tingling in the palms is why I suggested not to have the infusion into the back of your hand. The arm/hand ache and tingling slowly get worse with each infusion. It was the third or fourth cycle when they switched from my elbow to hand, but after that infusion my hand was so tender I couldn't even bear to put on a pair of soft gardening gloves. Switching arms half way through the infusion also helped reduce arm ache and tingling.

Re: Rectal Cancer: Habr-Gama Watch and Wait Strategy to Avoid Surgery

Posted: Tue Apr 23, 2019 11:33 am
by Rikimaroo
Hi Rikamaroo
Did you feel any symptoms before recurrence ? So was it about 6 months after you had stopped chemo rad or more ? Thanks for help xxx Annie ccx




No symptoms. I just went for my 3 month follow-ups and scans and blood work and that is how they saw recurrence.

Re: Rectal Cancer: Habr-Gama Watch and Wait Strategy to Avoid Surgery

Posted: Wed Apr 24, 2019 6:16 am
by Annie50
Rikimaroo wrote:
Hi Rikamaroo
Did you feel any symptoms before recurrence ? So was it about 6 months after you had stopped chemo rad or more ? Thanks for help xxx Annie ccx




No symptoms. I just went for my 3 month follow-ups and scans and blood work and that is how they saw recurrence.

Scary ? Sorry, I thought I'd read you had blood again etc in stools ? Xxx annie xxx

Re: Rectal Cancer: Habr-Gama Watch and Wait Strategy to Avoid Surgery

Posted: Wed Apr 24, 2019 11:10 am
by Jolene
prs wrote:Hi Jolene, the tingling in the palms is why I suggested not to have the infusion into the back of your hand. The arm/hand ache and tingling slowly get worse with each infusion. It was the third or fourth cycle when they switched from my elbow to hand, but after that infusion my hand was so tender I couldn't even bear to put on a pair of soft gardening gloves. Switching arms half way through the infusion also helped reduce arm ache and tingling.


Hi PRS - gotcha ! My arm/hand though achy, was very manageable and disappeared by the 4th/5th day. Saying that it was only the first cycle ! I spoke to the oncologist today about extending the infusion time but he said it is done only for those who aches badly from the get go and from the sound of it I seemed to be taking it well in the first cycle. I'm so afraid of the cumulative pain as described by a number of you here, I might try and push him to extend the infusion time ! I've got plenty of time anyway !! 2 hours vs 4 hours doesn't really make a huge difference as I'm gonna be exhausted on the same day anyway and not as if I could have anywhere else to go on the same day after infusion !

I forgot to ask about the back of hand vs the elbow though ! Note to self at the next appointment !

Re: Rectal Cancer: Habr-Gama Watch and Wait Strategy to Avoid Surgery

Posted: Thu Apr 25, 2019 2:40 pm
by Rikimaroo
Scary ? Sorry, I thought I'd read you had blood again etc in stools ? Xxx annie xxx



Sorry I misread your post. Yes after chemo radiation which was done in Feb 2017, I thought all was well. I had scopes for 6 months twice and nothing. Then the same bleeding starting happening again and thats how I knew it was back and then confirmed with my next scope.

Re: Rectal Cancer: Habr-Gama Watch and Wait Strategy to Avoid Surgery

Posted: Mon Apr 29, 2019 12:11 am
by Annie50
Rikimaroo wrote:
Scary ? Sorry, I thought I'd read you had blood again etc in stools ? Xxx annie xxx



Sorry I misread your post. Yes after chemo radiation which was done in Feb 2017, I thought all was well. I had scopes for 6 months twice and nothing. Then the same bleeding starting happening again and thats how I knew it was back and then confirmed with my next scope.

Thanks Rikaroo
Was it persistent the bleeding ? Did they take biopsies with your scopes or after the chemorad to Cebu complete response ? Did they monitor your CEA levels ? How are you doing now ? Waiting for reversal or have you had it ? Thanks for your help Rikamaroo I'm on W&W and had CT 2 x MRI s and 2 sigmoidoscopy clear .., xxx annie xxx

Re: Rectal Cancer: Habr-Gama Watch and Wait Strategy to Avoid Surgery

Posted: Thu May 02, 2019 8:34 am
by lakeswim
Watch and Waiters: when did you have your chest port removed (if you had one)?

Besides being a little superstitious, I also read an article in a waiting room at MSK that said surgery itself (via the inflammation) can cause (trigger) metastases. (I was called back as I was reading it so I didn’t get to note the issue, etc.)

Re: Rectal Cancer: Habr-Gama Watch and Wait Strategy to Avoid Surgery

Posted: Thu May 02, 2019 10:03 am
by nifty624
Hi lakeswim,

I just had my port installed on Monday. There was some inflammation/swelling as in many minor surgeries.

I hadn't really heard anything about port installation possibly triggering metastasis. To be honest, I'm not sure how the port and its associated brief period of swelling could be any worse than repeated arm IVs and the swelling/irritation there? Mind you, I may be an outlier there with difficulty in the hand/arm veins.

Thing is, I think there will always be risks of almost any treatments having unintended consequences such as you describe. The chemo itself can set off new growths in the body since many of them do alter cell DNA/RNA. Surgery can scatter microscopic cells. I think of it as these are the unknowns that we risk for the known benefits of the treatments we undergo. Cancer treatment still seems so primitive. I hope one day the horrors of radical surgeries and punishing chemotherapy regimens will seem as incredible and outdated as bloodletting from earlier centuries. But for now, it's the best we have. Have to undertake it after getting as well informed as we possibly can be.

Re: Rectal Cancer: Habr-Gama Watch and Wait Strategy to Avoid Surgery

Posted: Thu May 02, 2019 12:29 pm
by lakeswim
Sorry! I meant major surgeries. I think the study was targeting breast cancer surgery but don’t recall. I need to research more. I am also interested (besides getting the port out) because I was about to schedule bunion surgery when I was diagnosed. My bunions have gotten really bad and limit my exercise but I’m a bit leery of any elective surgery now - for many reasons.

Re: Rectal Cancer: Habr-Gama Watch and Wait Strategy to Avoid Surgery

Posted: Thu May 02, 2019 1:19 pm
by nifty624
I completely understand your hesitation about elective surgery right now! For me, I would weigh my quality of life against the risk (and I'd read only top notch medical journals and studies for the information, just to be on the safe side).
I didn't realise you had a port too! I missed that somehow.

Re: Rectal Cancer: Habr-Gama Watch and Wait Strategy to Avoid Surgery

Posted: Thu May 02, 2019 1:40 pm
by nifty624
Jolene wrote:Hey Nifty - was just thinking about you and wondered if you started Chemo !

Congrats on the good pathology news ! What's your WW surveillance arrangement with your team like ?

My mum had a port installed herself a few years back due to colon cancer and she appreciated it. Like you, they often couldn't get a good vein out of her and she was sick of being pricked repeatedly for all sort of blood work and infusions. The fact that she was on 12 cycles of Folfox warrants it even more !

I'm wondering how do the doctors decide between FOLFOX or XELOX for ww patients ! Were you offered XELOX at all ?

My arm is no longer aching, the ache went away around day 4/5 but that was also the time when I felt the most exhausted when the steroid weans off. It's day 12 of my very first cycle and I'm starting to feel mild tingling on my palms. I guessed its coming !!!



Hi Jolene,
Sorry I missed that you asked me some questions.
I am not on an official WW protocol. My doctors do not do it and in fact had me scheduled for the radical surgery etc. I advocated for myself and made sure they understood that I knew the potential risks and was still choosing to go the less invasive, organ-preserving route. Lucky for me, my surgeon and oncologist were respectful of my decision and promised to support me in my decision. They did insist before going ahead that I commit to the adjuvent chemotherapy. I had no problem doing so as I think it is a good idea, unless the side effects threaten to ruin my quality of life (ie if the peripheral neuropathy seems likely to become permanent or something like that).
The good news is that my surgeon is one of the top guys in my area for the TAMIS procedure and also seemed up to date on everything I brought to his attention. He also consulted with some colleagues out east (possibly even the people mentioned in this thread!) and after speaking to them, he let me know he was feeling even better about supporting me in my decision.
The follow up pathology and my complication-free recovery from the TAMIS surgery convinced him that not only had it been an OK risk to take, but he now believes it was the "best approach" to take in my case. I am SO GLAD I advocated for myself! And I am so glad I found this thread (thank you again prs and everyone who shared their stories in here!) because it was the first I had heard of there even being other options for me. From here, I did a ton of research and went to my surgeon armed with printed studies from top notch medical journals and universities. I am not generally an assertive person, but at this stage in my life I realised that my former passive deference to experts was not always in my best interest. I decided to take their advice into consideration and also learn as much as I could on my own, and then form an opinion on what I should do.

I am glad to hear that your mother found the port helpful. I am scheduled for 8 rounds of FOLFOX. No, I wasn't offered any other chemo regimen. I did ask about it, especially as I am very concerned about neuropathy - but the oncologist was adamant that this is the correct one for me.