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

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jsbsf
Posts: 52
Joined: Sat Aug 24, 2019 6:01 am
Location: San Francisco

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

Postby jsbsf » Fri Oct 09, 2020 7:20 pm

Thank you prs. You were inspirational, and I followed your story not expecting to ever make it to W&W. I told him about your side effects and how you mentioned later how you felt after recovery. How important it is to stay the course.

It seems like he’s one of very few, stage 4, to be given the W&W option. The doctors seem pretty convinced his cancer is gone.

He’s supposed to go in for quarterly checkups, I believe for the next 2 years. The rectal surgeon mentioned that this is not the normal standard of care, but they are not bound to that. After the 2nd year, he continues his checkups semiannually until the 5 year mark.

I know it’s not a done deal, but it’s the first time in over a year where we can both relax and think of all the other things in life.

I look forward to reading that many others have the news we received Friday.

Peter, November is right around the corner, and I’ll be thinking about you. Staying positive was truly half the battle.
DH 61
2019
8/23 C-scopy, 5+cm mass. CEA:4.1
8/26 CT ~1cm lvr met?
9/6 PET: liver spot
9/16 MSS. MRI: 2 liver mets: 2.7 & 7mm
9/23 Port
9/30 Start FOLFOX 1-6
10/4 Lg lvr met ~3.7cm (raised concern), pri tmr stable.
CEA: 10/13,12.5;10/27-12/8 btw 4.7 & 3.1
11/5 both lvr mets ~ 2/3 smaller.
12/17 PET: sm lvr met gone, remaining tmrs @10% of orig sz & actvty
Chemo break
2020
MWA 2/5, Lap resection 2/11
CEA: 3/1-5/31 btw 2.1&2.9
3/2 start FOLFOX 7-12
7/23-29 radiation
10/2/2020 NED

prayingforccr
Posts: 33
Joined: Sun Jun 28, 2020 4:44 pm

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

Postby prayingforccr » Sun Oct 11, 2020 9:33 am

omg........that is a fantastic miracle!!!

I have my endoscopy the week of nov 10 to determine if there is any persistent disease after having gone through 5 weeks of radiation concurrent with capecitabine and a trial drug (m3814) at sloan kettering, and 8 cycles of FOLFOX (which I just completed last week).

At least 80% of the tumor had been destroyed as of may (prior to chemo), and I am PRAYING for a ccr and w&w as I have determined that I will not accept any surgery that involves colostomy.

I have reached out to md Anderson as backup who has agreed to work with me should a small bit of persistent disease remain.

It has been a difficult year, but I am SO grateful for the treatment I’ve received, the prayers and support of friends and loved ones, and my progress thusfar.

I will update the forum as news comes in.

Again, congratulations and God bless your miracle.
Nov 2020: colonoscopy
Dec 2020: diagnosed with stage 3 rectal cancer 6+cm tumor
Jan-mar 2021: 20 sessions of radiation, mon-fri capecetibine, mon-fri clinical trial drug m3814
Apr 2021: anoscopy confirmed tumor/scar 3.7cm with significant tumor necrosis but some persistent disease
July 2021: began 8 treatments FOLFOX
August 2021: ct scan reveals scar bed reduced to 2.7cm CEA is 1.5

prs
Posts: 172
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 » Sun Oct 11, 2020 9:40 pm

jsbsf wrote:Thank you prs. You were inspirational, and I followed your story not expecting to ever make it to W&W. I told him about your side effects and how you mentioned later how you felt after recovery. How important it is to stay the course.

It seems like he’s one of very few, stage 4, to be given the W&W option. The doctors seem pretty convinced his cancer is gone.

He’s supposed to go in for quarterly checkups, I believe for the next 2 years. The rectal surgeon mentioned that this is not the normal standard of care, but they are not bound to that. After the 2nd year, he continues his checkups semiannually until the 5 year mark.

I know it’s not a done deal, but it’s the first time in over a year where we can both relax and think of all the other things in life.

I look forward to reading that many others have the news we received Friday.

Peter, November is right around the corner, and I’ll be thinking about you. Staying positive was truly half the battle.

Thank you, your post made my day! Now comes the challenge of getting your husband's body back into shape so he (and you!) can start to enjoy life again.

I exercised regularly before my diagnosis and was in pretty good shape. However I never felt up to exercising during treatment, and in combination with the effects of the radiation and chemo I was in really poor shape at the end. About a month after treatment we went to Vegas and the plan was to spend the first morning strolling round the casinos. After about an hour my legs just gave out, I had to sit down and we eventually walked back to the hotel in short stages.

I thought I would be able to get back in shape quickly but that proved impossible. All my blood counts bottomed out at or just below the low end of the normal range, and have stayed there ever since. Apparently there is a lot of blood producing bone in the pelvic area and the radiation has a permanent effect on it. It took me ages to figure out I was never going to be able to exercise at the rate I did before. In fact I discovered that if I overdid it, the lack of oxygen would actually kill muscle tissue rather than build it, and I was actually going backwards rather than forwards.

I have found that slow but steady progress is the best way to do it. Exercise at a rate and for a time that your body is comfortable with. If your muscles get stiff then back off. Then slowly increase the amount of exercise over time.

Hope this helps.
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

roadrunner
Posts: 55
Joined: Sun Jan 12, 2020 8:46 pm

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

Postby roadrunner » Wed Oct 14, 2020 5:11 pm

Since I’ve posted on this thread before, I thought I’d post an update, and I do have a question or two at the bottom for you W&Wers.

To summarize, I was diagnosed as Stage 3 RC with 2-3 local nodes likely positive (I was told 70%/30% likelihood that these were positive), I did 4 cycles of FOLFOX last fall as part of TNT. Jumped to chemorad due to side effects (huge DVT, wild liver enzymes, arrythmias, neutropenia, etc.) and excellent initial response (reduction of 70-80%). Did 60Gy rad with Xeloda, also did an extra 4 weeks of Xeloda. MRI in the spring showed a “near cCR” but was not conclusive. Flex sig showed little palpable tumor left, but not quite the flat white scar desired for W&W. A biopsy was performed and the results were negative. My surgeon thought the best course was TME surgery, but staged with a periopetative biopsy first after transanal excision (all part of one procedure). After consultation with my surgeon and oncologists, I underwent the 4 remaining cycles of FOLFOX (to complete TNT), and despite some weird bleeding issues and the familiar arrythmias, I completed those about 6-7 weeks ago. My oncologist advised that I “had a cCR” after a rectal exam, but that my surgeon’s assessment should guide next steps. Another flex sig was done, and nothing palpable was found, just a red area. My surgeon scheduled a transanal excision to investigate the remaining tissue, but this time without a likely TME procedure to follow in the same procedure.

So I’m now scheduled for a TAE. My question is: Do any of you have experience with this approach — excision then possible W&W? If so, are there any things I should be looking for/expecting, before, during, or after the procedure? For example, am I likely to get a clear choice after the tissue is tested, or might it be a matter of degrees of risk? Obviously, I’d love to avoid the big surgery but my main point is to live through this challenge. Any wisdom/experience is welcome. Thanks!
7/19: Rectal cancer: Initially staged as IIIA, T2N1M0
Initially approx 4.25 cm, low/mid rectum, mod. well diff. adenocarcinoma
8/22 -10/14 4 rounds FOLFOX neoadjuvant, 3 w/Oxiplatin (lots of side effects/reduced size est. 70-75%)
Switched to neoadjuvant chemorad in 11/19 (Xeloda and approx. IMRT, 60 Gy, 33 fractions)
Trying to achieve cCR.

prs
Posts: 172
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 » Fri Oct 16, 2020 2:18 pm

roadrunner, if I remember correctly there is discussion of these procedures in this thread. You'll likely have to read thru the entire thread to find them.

If those posts don't give you enough, you could try private messaging those contributors for more info.
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

Jolene
Posts: 156
Joined: Wed Jan 23, 2019 10:17 am

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

Postby Jolene » Mon Oct 19, 2020 12:31 pm

Hi road runner - if you do a search on excision I believe you will find a lot of information on this thread. There was one poster who was very pro excision though I cannot remember her nickname. I think it worked very well for her.

Before I was declared a WW case, I inquired about excision after reading some posts here with my doc and he was not keen citing issues of recovery and pain. He mentioned something that there is always the arguement that the excision is either not wide enough or not deep enough for a thorough CCR confirmation. So he would rather triangulate a regular sig flex (with biospy) with other tests and scans for confirmation.

In the end we did a triangulation of results with a combination of a regular sig flex (with biopsy test) + MRI/PET + rectal ultra sound + rectal exam and that I would be declared WW only if all results came back negative. Saying that, I was fortunate to be very well covered with insurance and it was a luxury to be provided the whole kitchen of tests and scans. My medical facilities also had all the machines and equipments in one location. It may not be the case for everyone and you will have to discuss with the doc what are the best ways of CCR confirmation given various circumstantial restrictions.

Reading through the threads over the last 2 years, I gathered that different doctors seems to have different school of thoughts on what benchmark to use for the declaration of WW. It has evolved quite a bit since Dr Habr-Gama days when she pioneered the concept. For mine, he requires at least 3 negative returns from all the tests/scans/checks but that's just my doc.

Good luck and all the best ! keep us posted !
Dx @ 39 F, married
Nov 18 - Dx of a mid-rectal tumour at T3N1M0 (2cm) 7cm from AV
Dec 18 - CRT, 28 sessions + Capecitabine at 3000mg daily
Jan - Mar - Wait and watch in place
Mar 19 - MRI, PET, sig flex and biopsy ordered to determine being a WW candidate.
Apr 19 - CCR. Surgery on hold. 6 cycles of Xelox.
Aug 19 - Completed 6 cycles of Xelox.
Oct 19 - Flex sig, biopsy, PET/MRI - clear
Jan 20 - Colonscopy, biopsy, MRI - clear
Jun 20 - Flex sig, biopsy, PET/MRI, CT - clear
Jan 21 - Tests scheduled


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