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

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mozart13
Posts: 140
Joined: Fri Dec 09, 2016 7:38 pm
Location: Toronto

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

Postby mozart13 » Fri Sep 14, 2018 7:39 pm

Thx prs,
it’s all good. Enjoyed summer and world cup (soccer). Was in Europe during games.
Have recovered from most of the side effects of chemo except neuropathy , but one learns to live with it.
It’s nice to see that this approach has taken off and evolved.
55 year at the time of diagnosis, male
Diagnosed with T1,T2 N0 M0 rectal cancer
Total neoadjuvant therapy or TNT (chemoradiation followed by systemic chemotherapy)
Negative since Feb. '17
No surgery
Watch&Wait approach 8)
I don’t come much to forum , so if this is not updated it means I remain negative!
Wish good luck to all!

skb
Posts: 32
Joined: Tue Mar 28, 2017 2:00 pm

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

Postby skb » Fri Sep 21, 2018 1:39 pm

Good to know that prs and mozart13 are doing well with no recurrence. So am I, my latest sigmoidoscopy was two weeks ago and I was happy to learn there was no local recurrence.
3/21/17: Dx T3N0M0- distal rectal cancer, 4.5cm tumor, 2.5 cm from anal verge
4/18 to 5/22/17: chemoradiation - Xeloda 1800mg twice a day for 25 days, 200 Cgy per day
6/28/17: biopsy from tumor location: no invasive adenocarcinoma
8/09/17: MRI - no primary tumor left
8/11/17: starts wait and watch at Univ of Minn.
8/17/17 to 12/1/17: mop-up chemo with Folfox and oxaliplatin (IV infusion), every two weeks
1/28/18 colonoscopy - no tumor
4/4/18 MRI -- no tumor still
6/13/18 Sigmoidoscopy- no tumor still

mozart13
Posts: 140
Joined: Fri Dec 09, 2016 7:38 pm
Location: Toronto

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

Postby mozart13 » Fri Sep 21, 2018 3:36 pm

That’s great skb.
It looks like this approach, now call TNT is working. Might come in different order like chemo than chemo/rad, but it’s the same package.
Also people that need operation beneffit from it, as it might be diffucult to start chemo right after operation, and there is time limit when beneffits of therapy are diminished if one waits to long.
55 year at the time of diagnosis, male
Diagnosed with T1,T2 N0 M0 rectal cancer
Total neoadjuvant therapy or TNT (chemoradiation followed by systemic chemotherapy)
Negative since Feb. '17
No surgery
Watch&Wait approach 8)
I don’t come much to forum , so if this is not updated it means I remain negative!
Wish good luck to all!

prs
Posts: 123
Joined: Sat Dec 12, 2015 7:09 pm
Location: Central California

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

Postby prs » Sat Sep 22, 2018 2:33 pm

Great news skb !!!

I have an appointment with my colorectal surgeon at the end of October. I know she keeps up with all the data, so I'll ask her how long she thinks it will be before W&W goes mainstream.
Peter, age 65 at dx
DX 4 cm x 4 cm very low rectal adenocarcinoma into the sphincters 01/15
Stage III T3 N1 M0 with two suspicious lymph nodes
26 sessions IMRT radiation with 1,000 mg Xeloda twice per day 03/15 to 04/15
Complete clincal response to the chemoradiation...the tumor shrank completely away 06/15 :D
No surgery...Habr-Gama watch and wait protocol instead
Xelox chemotherapy 07/15-12/15
MRI and rectal exam every three months starting 07/15
MRI and rectal exam every six months starting 07/17
NED

lakeswim
Posts: 111
Joined: Sat Mar 31, 2018 9:37 am

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

Postby lakeswim » Mon Nov 26, 2018 7:12 pm

Hello, all.
Peter was kind enough to point me to this thread. I may be putting the cart ahead of the horse, as I have not been given the W&W option yet, but I want to research now, just in case (as I may be able to more calmly research now when I have less anxiety about the decision as it's further off).

I did 4 months of FOLFOX over the summer. Had a month's break, with a pelvic MRI during this time that showed the chemo alone shrank the tumor somewhat (and I had to stop the Oxaly after 5 rounds due to severe hand and leg cramping). I just finished, last week, 28 sessions of radiation with capecatabine (as much as I could tolerate, which turned out to be 20 days). They tell me I will get another pelvic MRI in mid-January (I think that will be close to 8 weeks post radiation) to determine next steps and if W&W is an option for me.

My team is pretty excited about the W&W option - as you can probably tell by the path they chose for me (total neoadjuvant therapy). In fact, early on, they asked me to be part of a clinical trial, which involved being chosen randomly to either get chemo first and then chemo/rad OR the flip option (chem/rad first and then chemo). I was too freaked out at that point and the decision needed to be made quickly in order to start treatment (and I felt a lot of pressure), so I declined being part of it. Anyway, they are excited about the option, so if I meet their criteria (which I need to find out the specifics of), I will have that option.

I have read through this thread once and need to do it again while taking notes, but I'm curious what you folks think are the most important questions regarding the W&W option. (Has anyone made such a list anywhere else?) I also need to learn more about terminology (because terminology and acronyms in these threads always frustrates me and halts my research) and the difference between a pathological response and a clinical response - because that seems critical to this discussion.

Questions for W&W:
- What criteria will they use to determine if W&W is an option for me? (I have a large, poorly differentiated, Stage 3a tumor. Does tumor size/type/location matter in this decision?)
- Will there be any biopsy option (as someone seemed to have in this thread) to show that I've had a pathological (right?) complete response?
- How much higher is the risk of recurrence than if I had surgery?
- Would surgery still be an option in the future if there is a recurrence? (Is this "salvage" surgery?) And are people worse off after salvage surgery than having the surgery initially?
- I realize there are trials running now and there isn't much LT data, but what is the longest term data we have for patients who have chosen W&W?
- What will be the plan for surveillance after we choose this option?

Any questions you folks would add to this - perhaps questions you wish you had asked? (I'm sure I'm missing a lot of critical info as I'm just starting this process.)

This is a great thread which has been very helpful, but I have to admit it causes me much anxiety.(What a decision!) I feel like I equally need to do more research on LARS too, so I know what I may live with if I do surgery.

Thanks very much. And best wishes to all.
50 - F (Just turned 50 so writing this # for the first time - ACK!)
Mom to 2 kids
RC - dgns March '18 at age 49 (colonoscopy aftr blood in stool)
Adenocarcinoma
10-11 cm from anal verge
Stage 3a - T4N0M0
FOLFOX May -Sept '18 (8 rounds total chemo - but stopped Oxaly after severe reactions in Round 5 or 6)
Capecetabine + Radiation - 28 sessions (Oct - Nov 2018) (Stopped Cap after 20 days due to intolerance)
Next steps.....scans in Jan will determine if W&W is an option or surgery

User avatar
CRguy
Posts: 9673
Joined: Sun Feb 10, 2008 6:00 pm

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

Postby CRguy » Mon Nov 26, 2018 9:52 pm

lakeswim wrote:Questions for W&W:
- What criteria will they use to determine if W&W is an option for me? (I have a large, poorly differentiated, Stage 3a tumor.
poorly diff'd is less good. I had moderately well diff'd, did the full meal deal ..... and still had one recurrence, and now waiting on CT results to see if I have something else .... 11 years later !

Does tumor size/type/location matter in this decision?)
Yes for a number of reasons

- Will there be any biopsy option (as someone seemed to have in this thread) to show that I've had a pathological (right?) complete response?
pathCR = they have seen at the cellular level what is there ... I had pCR and still had a met later
clinicalCR= they are using clinical signs, exams and imaging to presume what may be there


- How much higher is the risk of recurrence than if I had surgery?
don't have stats or other info from my sitrep
THIS is probably the exact question they are trying to answer with their clinical trials


- Would surgery still be an option in the future if there is a recurrence? (Is this "salvage" surgery?) And are people worse off after salvage surgery than having the surgery initially?
make SURE 1,000 % that doing a trial, W&W, whatever ... does NOT exclude you from further options

- I realize there are trials running now and there isn't much LT data, but what is the longest term data we have for patients who have chosen W&W?
hoping some more can weigh in. I am NOT W&W and please be advised ... others' experiences may NOT reflect how you will do or not do in any given trial or treatment regimen

- What will be the plan for surveillance after we choose this option?
THIS my friend is the GOLD standard question ...
IMO as much, of different types, with more "eyes" on your sitrep = BETTER




If you find the abbreviations etc an issue please check out our Terminology and abbreviations topic
Or just ask any questions here or in your own topic !

YOU are on the right path
knowledge IS power
use your experts
KICK ASS and take names !!!!! :twisted:

Cheers and Harmony
CRguy on the Journey
Caregiver x 3
Stage IV A rectal cancer/lung met
11 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

prs
Posts: 123
Joined: Sat Dec 12, 2015 7:09 pm
Location: Central California

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

Postby prs » Mon Nov 26, 2018 10:20 pm

Hi @lakeswim the answers to most of your questions are contained in the thread, but it's a long thread and it's a very complex subject. :!:

Just take your time to read it thru slowly, page by page, so you get to fully understand and remember all the little details. You have plenty of time for this because, as you have already noted, it will be sometime into 2019 before you have to make a decision.

The location of your tumor will also impact your decision, ie how close it is to your sphincter muscles. You might want to consider putting this kind of info in your signature to make it easier for us to advise you.
Peter, age 65 at dx
DX 4 cm x 4 cm very low rectal adenocarcinoma into the sphincters 01/15
Stage III T3 N1 M0 with two suspicious lymph nodes
26 sessions IMRT radiation with 1,000 mg Xeloda twice per day 03/15 to 04/15
Complete clincal response to the chemoradiation...the tumor shrank completely away 06/15 :D
No surgery...Habr-Gama watch and wait protocol instead
Xelox chemotherapy 07/15-12/15
MRI and rectal exam every three months starting 07/15
MRI and rectal exam every six months starting 07/17
NED

lakeswim
Posts: 111
Joined: Sat Mar 31, 2018 9:37 am

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

Postby lakeswim » Mon Nov 26, 2018 10:29 pm

I thought I included my tumor location in my signature - "10-11 from anal verge." Is there something else I don't know about? Please advise as to what info I am missing. (Steep learning curve - just trying to keep up!) Thanks very much for any help!
50 - F (Just turned 50 so writing this # for the first time - ACK!)
Mom to 2 kids
RC - dgns March '18 at age 49 (colonoscopy aftr blood in stool)
Adenocarcinoma
10-11 cm from anal verge
Stage 3a - T4N0M0
FOLFOX May -Sept '18 (8 rounds total chemo - but stopped Oxaly after severe reactions in Round 5 or 6)
Capecetabine + Radiation - 28 sessions (Oct - Nov 2018) (Stopped Cap after 20 days due to intolerance)
Next steps.....scans in Jan will determine if W&W is an option or surgery

prs
Posts: 123
Joined: Sat Dec 12, 2015 7:09 pm
Location: Central California

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

Postby prs » Tue Nov 27, 2018 12:42 am

Sorry lakeswim, I just realized that when one is writing a reply, and one scrolls down to check previous posts, all the signatures disappear. Your sig is fine!

One point I would like to make is that when I first started this thread W&W was very new. I certainly didn't want to be seen as trying to talk people into doing W&W when I wasn't certain if it was truly a good option. I decided just to post all the info I could, but try to be neutral, and let people make their own decisions.

Three years later I'm 100% for W&W, and feel it is a great option for those folks lucky enough to be candidates for the program. Every day I feel like I'm a walking miracle!
Peter, age 65 at dx
DX 4 cm x 4 cm very low rectal adenocarcinoma into the sphincters 01/15
Stage III T3 N1 M0 with two suspicious lymph nodes
26 sessions IMRT radiation with 1,000 mg Xeloda twice per day 03/15 to 04/15
Complete clincal response to the chemoradiation...the tumor shrank completely away 06/15 :D
No surgery...Habr-Gama watch and wait protocol instead
Xelox chemotherapy 07/15-12/15
MRI and rectal exam every three months starting 07/15
MRI and rectal exam every six months starting 07/17
NED


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