Prospective Phase II US study: complete clinical responders

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Coyote
Posts: 9
Joined: Mon Feb 02, 2015 2:55 pm

Re: Prospective Phase II US study: complete clinical respond

Postby Coyote » Tue Feb 03, 2015 12:00 pm

Yes, both groups get the same treatment, just in a different order. That is one of the things that makes this trial appealing. No placeabo group.
Unfortunately for me, surgery means a permanent colostomy and while I admire all the brave people who live with those, I do not want to go there.
5/13 RCa Stage I, Age 51
Naturopathic care
10/14 CEA 4.9
1/15 CEA 4.6
6/15 CEA 3.8
7/15 IMRT + Xeloda (6 weeks)

Ktwirls
Posts: 147
Joined: Thu Aug 12, 2010 9:12 am
Location: Quad Cities IA/IL
Contact:

Re: Prospective Phase II US study: complete clinical respond

Postby Ktwirls » Tue Feb 03, 2015 7:56 pm

Coyote, I see you were dx in May 2013, have you had any standard medical treatment if so what or just treatment besides naturopathic? Did you go into remission and now is back?? If you want I would love to know your background story. Especially since it is so long since your dx and it seems you are now trying to decide whether to enroll in this study.

"The drugs in the study seem to be producing good results (OXAL, 5-FU, Leucovorin, and Xeloda). Are those pretty standard or are there others that I should be considering if I choose the chemo route."

Yes those are standard for many especially first time around and not stage 4
Kim Ann, mom to 6
dx May 2010 age 37 (symptoms started in pregnancy age 36)
Rectal Cancer stage 3b T4,N1
FolFox 8, chem/rad 6wks
It came back March 2014
APR w/ PPE surgery, now on chemo, latest scan NED
http://cancercaughtme.blogspot.com/

Coyote
Posts: 9
Joined: Mon Feb 02, 2015 2:55 pm

Re: Prospective Phase II US study: complete clinical respond

Postby Coyote » Wed Feb 04, 2015 12:26 am

Thanks for your reply.
I have only used naturopathic treatments to-date and I believe they have slowed progression and helped me be symptom-free for over a year. However, the tumor is not stable, so I am starting to consider other options.
The key therapies for me have been the ketogenic diet and the Dr. Kelly enzyme protocol. I also take immune boosting supplements.
I see you have had some surgery but I'm not up on all the acronyms yet. What is PPE?
5/13 RCa Stage I, Age 51
Naturopathic care
10/14 CEA 4.9
1/15 CEA 4.6
6/15 CEA 3.8
7/15 IMRT + Xeloda (6 weeks)

User avatar
John72
Posts: 338
Joined: Fri Jan 28, 2011 3:06 am
Location: Los Angeles

Re: Prospective Phase II US study: complete clinical respond

Postby John72 » Wed Feb 04, 2015 1:12 am

Coyote wrote:Thanks for your reply.
I have only used naturopathic treatments to-date and I believe they have slowed progression and helped me be symptom-free for over a year. However, the tumor is not stable, so I am starting to consider other options.
The key therapies for me have been the ketogenic diet and the Dr. Kelly enzyme protocol. I also take immune boosting supplements.
I see you have had some surgery but I'm not up on all the acronyms yet. What is PPE?


How can you know this?
7/13/10 CC
7/23/10 -3C RC, 7cm,15/33 lymph nodes
8/31/10 5 1/2 weeks of radiation + Xeloda
11/12/10 6 rounds Oxy + Xeloda
3/25/11 Finished chemo
6/15/11 Colostomy reversal followed by infections
9/05/14 Clear CT scan

weisssoccermom
Posts: 5962
Joined: Thu May 10, 2007 2:32 pm
Location: Pacific NW

Re: Prospective Phase II US study: complete clinical respond

Postby weisssoccermom » Wed Feb 04, 2015 1:37 am

Coyote,
First of all, you don't get to 'choose' the drugs....the oncologist does and you also have to have the approval of the insurance company. I don't mean to be rude but IF you still are a stage I (two years without treatments and you could easily now be different stage) when and if you decide to undergo any sort of chemotherapy, your insurance will likely balk at having chemo since it is not considered 'standard of care'. If they are going to 'approve' of any, it would likely be 5FU/leucovorin or the oral version, Xeloda. Oxaliplain would most likely not be covered by the insurance company.....or at least not without a fight.

As for the surgery, I understand your reluctance to have a permanent colostomy but have you consulted a board certified colon and rectal surgeon? I ask because general surgeons, who are board certified in general surgery (nothing wrong with that) will tell patients that they can do the surgery and, of course they can BUT.....if your tumor is located where a surgeon feels a colostomy is a 'given' then you should really seek another opinion and make sure that he/she is a board certified colon and rectal surgeon.

You should also talk to a bc colorectal surgeon if an excision is a possibility, particularly if you are a stage I. However, your tumor may be too close to the anal sphincters for even this surgery. It is, however, worth asking. Do you know how far up your tumor is located?
Please do something, anything.....but get in and talk to an oncologist and see what suggestions he/she has. You'll have to find one that thinks 'outside the box' but they are out there. Don't wait because if it has spread, you are looking at a much more difficult road ahead.
Dx 6/22/2006 IIA rectal cancer
6 wks rad/Xeloda -finished 9/06
1st attempt transanal excision 11/06
11/17/06 XELOX 1 cycle
5 months Xeloda only Dec '06 - April '07
10+ blood clots, 1 DVT 1/07
transanal excision 4/20/07 path-NO CANCER CELLS!
NED now and forever!
Perform random acts of kindness

hawkowl
Posts: 125
Joined: Sun Dec 14, 2014 5:29 am
Location: MN/FL

Re: Prospective Phase II US study: complete clinical respond

Postby hawkowl » Wed Feb 04, 2015 6:38 am

My onc discussed this study with me in mid December,and we elected to start with 8 cycles of neoadjuvant folfox then restage (3b rectal) and decide then about proceeding directly to surgery, vs additional chemo or chemorad first. We have only briefly chatted about the no surgery route; I am not sure how I would feel about that, but it makes sense that it would not have a huge impact on survival, just local recurrence

I will be doing a lot more research and soul searching in the coming months, and may opt for additional opinions.

I would not be willing to avoid surgery if there was a lesser chance of long term survival, would like to see longer term data myself before deciding, but if not available will opt for permanent colostomy
Dx 12/2014 T3N2MX (distant LPLN) low rectal
12/2014-4/2015: FOLFOX (8 cycles)
4/2015-6/2015: 28 cycles of chemoradiation with xeloda
8/2015: Robotic APR with iliac node dissection; path showed ypT0,ypN0 (complete pathological response).
11/2015 scans clear, CEA 2.1
11/2015 parastomal hernia repair
3/2016 CEA 1.7
10/2017 CEA remains in normal range (1.4), scans stable.
6/2018 CEA still normal.
Now dealing with pyoderma gangrenosum.
Totally disabled due to oxaliplatin induced neuropathy and dysautonomia

Coyote
Posts: 9
Joined: Mon Feb 02, 2015 2:55 pm

Re: Prospective Phase II US study: complete clinical respond

Postby Coyote » Wed Apr 01, 2015 1:17 pm

I interviewed for the trial and have decided to pursue chemo/radiation with a traditional oncologist. He says that if more treatment is needed after the chemo/radiation, we can consider chemotherapy before surgery. The trial does not pay for anything, they bill insurance like my regular Oncologist, so there is not a big incentive.
My Oncologist recommends 6 weeks of Xeloda and IMRT (5x/week). I see some people are using Oxi at the same time but the side effects sound rough... still if it gives better results. I'd like to hear more opinions on that.
Also, I was hoping for 5-FU instead of Xeloda but the Oncologist says they are the same. True?
I appreciate all the posts about side-effects. Those will really help me prepare for what's ahead.
5/13 RCa Stage I, Age 51
Naturopathic care
10/14 CEA 4.9
1/15 CEA 4.6
6/15 CEA 3.8
7/15 IMRT + Xeloda (6 weeks)

cathy123
Posts: 665
Joined: Sat Nov 08, 2014 3:36 pm

Re: Prospective Phase II US study: complete clinical respond

Postby cathy123 » Wed Apr 01, 2015 8:00 pm

Yes Xeloda is the oral form of 5fu. It is the standard drug these days to go with radiation I think. The radiation isn't fun but 6 weeks isn't all that long. Hope you have a great response.
Cathy

Diagnosed 10/14 low rectal cancer age 43
Clinical T2NXMX
Radiation/xeloda 12/14-1/15
LAR with temp Ileo 3/15
pT2N0M0, lymphatic invasion 0/37 nodes
4 xelox, 1 xeloda only
Reversal 9/15
Mom to 9&11 year olds

mswinkle
Posts: 2
Joined: Sat Jul 25, 2015 8:50 am

Re: Prospective Phase II US study: complete clinical responders

Postby mswinkle » Sat Jul 25, 2015 10:48 am

Hi I am new to this forum, but want to thank everyone for their informed replies. My partner has rectal cancer and so far has had chemo, followed by chemo/radiation. After 7 weeks we had an MRI scan. We were nervous and while waiting with the oncologist we shared our fears of being told we would need surgery and permenent bag. Well the oncologist came back and said great news etc and we could do the 'watch and wait' based on MRI results. 2 hours later we met with the surgeon who blew us away when he said a complete 180 from oncologist and recommended surgery. There was a lot of back and forth at that point, but end result agreed to do a follow up MRI in a month.

At this point I am really nervous as the two initial opinions could not have been more apart. I also strongly believe had we met the surgeon first we would have been pushed into surgery and the oncologist would have fallen in line behind the surgeon.

We are at a major hospital for this type of cancer and would appreciate if someone can post what my options are and what next steps I should ask from the doctors. The tumour is quite low, I think it is 3.2cm from anal verge, so I think that impacts our choices.

thank you

ticktock10
Posts: 49
Joined: Fri Mar 07, 2014 3:49 am

Re: Prospective Phase II US study: complete clinical responders

Postby ticktock10 » Sat Jul 25, 2015 9:27 pm

Hi mswinkle,

I was in a similar situation and got different opinions from surgeon and oncologist. Ultimately, you and your partner will have to make the choice that you are most comfortable with, as there is no way of knowing the 'correct' decision in advance.

It's important that you think through the consequences and that you really understand the choice you are making. In a way, you have to thing about which 'wrong' choice is worse. ie. Is 'over-treatment' (ending up with permanent colostomy that was not really required) worse that 'under-treatment' (experiencing recurrence that would not have occurred if surgery had been done) ? The truth is you will never know for sure if you were overtreated or undertreated anyway, it's more about probabilities and how you would live with the thoughts in your head.

It's a question of risk and the surgeon/oncologist can't really assess that any better than you. You have access to the same research as they do. For example: http://gicasym.org/watchful-waiting-ins ... al-cancers

You should also try and get your head around what living with a colostomy would really be like and not make a decision based on fear. There are many videos on YouTube which help to visualise what it's like and there is a lot of information from people on here who have adapted to life with a bag with minimal disruption.

However, if you are seriously considering 'watch and wait', then I would encourage you to push for as much diagnostic information as you can get before you commit to it. I had MRI, PET and flexible sigmoidoscopy and the fact that all three came back clear was what gave me the confidence to avoid surgery. I'm not sure of costs etc and you need to get in quick as the surgeons typically don't like waiting for more than 8-12 weeks after radiotherapy, but there's no harm asking. It's a stressful time and I feel for you, but the more information you have, the better.
Oct 2013 - Dx Stage 2/3 low rectal cancer
Dec 2013- 6 weeks neo-adjuvant chemo-rad
Apr 2014 - PET and MRI show 'complete response'
May 2014 - Chose 'watch and wait' instead of APR surgery
Jun-Sep 2014 - 'adjuvant' chemo - 5FU
Sep 2014 - PET and MRI clear

Coyote
Posts: 9
Joined: Mon Feb 02, 2015 2:55 pm

Re: Prospective Phase II US study: complete clinical responders

Postby Coyote » Sat Aug 01, 2015 7:55 pm

Coyote here with an update:
I just completed 6 weeks of radiation & Xeloda. There are some great posts in this forum to help prepare you for the side effects on this therapy. I wish I had read more of them!
I worked with my naturopath not only to help keep me strong throughout the treatments but to help sensitize the tumor to the therapy. There was no "control group" obviously, but I did experience some serious side effects. I am hoping that is an indication that the sensitization was effective.
Regardless, I made it through and have "passed" the digital exam. That is, the tumor was low enough that they could feel it before the therapy and they cannot feel any tumor now.
More thorough testing cannot be done until I recover from the therapy (6-8 weeks) but so far, so good.
When I was originally diagnosed, I consulted a surgeon. Because I refused surgery, she basically said there was nothing that could be done and that I would be in hospice in a year facing a terrible death. Because I believed this prognosis, I waited longer than I should have to see an oncologist but I am glad that I finally did. It is over 2 years since my diagnosis and it is possible that I will beat this without surgery.
Never hesitate to go for a second (or third) opinion!
5/13 RCa Stage I, Age 51
Naturopathic care
10/14 CEA 4.9
1/15 CEA 4.6
6/15 CEA 3.8
7/15 IMRT + Xeloda (6 weeks)


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