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

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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 » Wed Apr 04, 2018 9:06 pm

Catwoman54 wrote:Anyone gone this route? Watch and wait? If so what was your stage?
What was the treatment order?
And where did you find a team to agree to do it?
Just diagnosed a couple of months ago and getting ready to start treatment. T3 N1 M0


Please see my post below from 8/15/2017. It lists centers in US that offer this treatment, the users here on this forum who have gone that route and my own personal journey. I had my latest scan yesterday and continue to be tumor-free.Fortunately

------

I have not posted in this forum in a while but I thought it was important to share some updates so that it could be useful for other patients.

My chemoradiation therapy ended on May 22nd 2017. Since June 2017, I have been having normal bowel movements. I had several imaging studies as well as a pathology study done to evaluate the tumor response.

June 26: Blood tests for genetic propensity for colorectal cancer retruns negative results for all 18 genes in the panel. This was initiated by my cancer team at Minnesota Oncology. The blood sample was sent to a lab in California.

June 28, 2017 (5 weeks after completion of chemoradiation): MRI Scan:
Approximately 10% of the mass demonstrated tumour signal intensity, with the remainder appearing to represent fibrosis. This corresponds to a tumour response grade of 2. No suspicious lymphadenopathy.

June 30, 2017: Flexible Sigmoidoscopy with biopsy:
A nodule/bump was all that remained in the place where the tumor used to be. A biopsy of deep tissue from where the tumor used to be revealed no evidence of adenocarcinoma.

August 7, 2017: (10 weeks after completion of chemoradiation): MRI Scan:
Approximately less than 5% of the mass demonstrated tumour signal intensity, with the remainder appearing to represent fibrosis. This corresponds to a tumour response grade of mrTRG-2.

August 9, 2017: (10 weeks after completion of chemoradiation): MRI Scan and PET scans as part of a study at Mayo clinic:
MRI report: No evidence of primary tumor. No evidence of distal metastasis

August 11, 2017: Oncologist at University of Minnesota Masonic Cancer Center calls the above reports an excellent response and places me in Wait and Watch Program if I am interested. I choose the Wait and Watch program after understanding risks and after signing up for an intensive follow up program.
August 17, 2017: Mop-up Chemotherapy to start. IV infusion of Folfox with Oxaliplatin. Every two weeks for approximately 5 months.

USEFUL INFORMATION FOR OTHER PATIENTS
========================================
1) Wait Period between completion of neoadjuvant therapy and surgery or evaluation for surgery:
Just by looking at my case, it appears that the chances of a complete tumor erasure are better if we wait longer after the completion of neoadjuvant chemoradiation. Some physicians recommend a waiting period of 4 weeks, some 5 weeks, the landmark Habr-Gama trial kept a waiting period of 8 weeks and some places wait about 10 weeks or more. There are studies going on regarding this. At least in one research paper, I read that the chances of tumor responding to neoadjuvant chemoradiation diminish after 10 to 12 weeks of completion of neoadjuvant chemoradiation. I was evaluated at 5 weeks and also at about 10 to 11 weeks.

2) University of Minnesota Masonic Cancer Center offers Wait and Watch Program for select patients with excellent response to neoadjuvant chemoradiation. There is not much information available online as to which Cancer Centers in the US offer this treatment. It is rare because it is not yet Standard of Care in the United States. It is probably the standard of care for complete responders in the hospital in Sao Paulo, Brazil where this method was pioneered. It is also offered as a choice to patients in the UK who are complete responders (read an online NHS pamphlet about it). In UK, it is called active surveillance. The patient is offered the choice, to either go for radical surgery or be on active surveillance. As far as I know, these are the centers in North America offering Wait and Watch program for patients with "complete response" (no consensus exists on what it is or how to measure complete clinical or pathological response)

- Memorial Sloan Kettering in NY
- Kaiser facility in Sunset Blvd. (CA)- this is where the user prs is having his treatment
- Some hospital in Toronto, Canada- )- this is where the user mozart13 is having his treatment
- Masonic Cancer Center, University of Minnesota, Minneapolis, MN- - this is where the user skb is having his treatment
- University of Rochester Medical Center in Rochester, NY

Memorial Sloan and the Rochester, NY hospital are the only ones in the US that are part of the International Wait and Watch Database

3) It is important to note that Wait and Watch is a risky approach and every patient who is offered this program has to decide what is best for them. I am not advocating one way or the other. Considering my situation, my genetic test results, I decided to take the risk. Rigorous follow up is key. It is important to detect reccurrences early so that there could be emergency salvage surgery. I am just sharing information here for the benefit of other patients


4) Being active, eating healthy seems to improve chances of response to treatment:
While I was waiting after my neoadjuvant chemoradiation, I asked lucky folks like prs and mozart13 whether they ate a special diet or had special exercise regimen that helped them get to complete response. prs used to walk regularly. My oncologist also recommends that. I can't say that I walked every day in the last 3 months for 30 mins. But I tried to lead a normal lifestyle. Went to work, picked up kids, cooked dinner every night for my family, played with my kids when I could make time. I was active. My wife prepared a cocktail juice of carrots, celery and ginger and she made me drink a mug of that daily. We do not know if that helped for sure but carrots and celery can't be bad for you.

I am curious as to how other complete responders like prs, mozart13 and Rikimaroo are doing. Please post if time permits. You are the ones who gave me hope.

Peace!
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 » Thu Apr 05, 2018 8:57 am

skb, it's nice to see that you doing well.
During folfox I managed to gain 6,7 kg's, all that is gone since chemo is finished. Going to gym 3-4 times/week, socializing, went on vacation down to Varadero, that felt good, long sandy beach, warm ocean water.
My Hemoglobin dropped to 115 after chemo finished back in Oct., bounced to 140 now, pomegranate and aronia helped.
Will have MRI,CT this month, every thing up to now is negative, so, not much concern in there.
Neuropathy is still there, because of that haven't return to work yet, not that I am in any rush to go back, summer is coming, wanna enjoy outdoors.
Overall feels good to be alive again, that folfox was brutal.

Cheers!
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 » Thu Apr 05, 2018 9:30 pm

mozart13 wrote:skb, it's nice to see that you doing well.
During folfox I managed to gain 6,7 kg's, all that is gone since chemo is finished. Going to gym 3-4 times/week, socializing, went on vacation down to Varadero, that felt good, long sandy beach, warm ocean water.
My Hemoglobin dropped to 115 after chemo finished back in Oct., bounced to 140 now, pomegranate and aronia helped.
Will have MRI,CT this month, every thing up to now is negative, so, not much concern in there.
Neuropathy is still there, because of that haven't return to work yet, not that I am in any rush to go back, summer is coming, wanna enjoy outdoors.
Overall feels good to be alive again, that folfox was brutal.

Cheers!


Thank you mozart13. I am lucky to have no tumor visible in the scan this week. But I have peripheral neuropathy and low WBC count. CEA is normal.

It is nice that you can afford not to work. I can't. I kept working all through the treatment last year except for two weeks when I was scheduled for surgery. I wish I could take time to enjoy the summer like you :-)
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 Apr 06, 2018 8:56 am

It's part of the folfox package, neuropathy, low WBC, low Lukocytes. So much for the package, lol.
But it is small price to pay, when treatment is successful.
skb you are doing well, I could have worked till about 2nd round of folfox, after that, it would have been difficult, symptoms were just overwhelming.

Cheers man!
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!

NHMike
Posts: 1788
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Fri Apr 06, 2018 9:16 am

skb wrote:Thank you mozart13. I am lucky to have no tumor visible in the scan this week. But I have peripheral neuropathy and low WBC count. CEA is normal.

It is nice that you can afford not to work. I can't. I kept working all through the treatment last year except for two weeks when I was scheduled for surgery. I wish I could take time to enjoy the summer like you :-)


I'm in the same boat and we're buried at work. I'm working a full load which is taking time away from working out which I hate.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal

prs
Posts: 118
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 Apr 06, 2018 11:34 am

skb wrote:I am curious as to how other complete responders like prs, mozart13 and Rikimaroo are doing. Please post if time permits. You are the ones who gave me hope.

Peace!

Hi skb, thanks for posting that info. I'm so happy W&W is working out for you. It's three years since I started my chemoradiation treatment and, thanks to W&W, I'm as healthy as I've ever been in my life. I was lucky in that I didn't get too much neuropathy and it's now completely gone away. It's over two years since I finished chemo and my blood counts have been slowly creeping back up. They are all now at, or just below, the bottom of the normal range. I gained 20 lbs during chemo but have lost that plus ten more. The weight loss was helped because I exercise six days a week and stopped eating carbs and processed foods, although I still drink wine on the weekends :D Of course being retired helps me find the time to keep up with the exercise routine! The diet is mostly willpower, but after a couple of months I no longer missed the bread, potatoes, pasta etc with every meal. I think my cancer scare forced me to reconsider my lifestyle, and hopefully the changes I've made will keep me healthy for many years to come.

I wish all the best to everyone who has to undergo this difficult journey, and hope stories like ours will give hope to those just starting out.
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

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 Apr 06, 2018 9:49 pm

Recent article about Total neoadjuvent therapy or TNT:
“At 12 months, the total complete response rate (including pathologic and sustained clinical complete responses) was 35.7% in the TNT group, compared with 21.3% in the conventional group. ”
https://oncology.medicinematters.com/re ... c/15578006

Similar article with more details:
“More patients in the TNT treatment group did not undergo surgery (24% vs 8%), and, in patients who received surgery, minimally invasive surgery was more common in the TNT group (72% vs 47%). Among patients who underwent surgery within 12 months, the pathologic CR rate was 18.3% with TNT and 16.6% for patients who did not receive neoadjuvant chemotherapy. For patients who did not have surgery, sustained clinical CR was achieved in 21.8% of patients in the TNT group, compared to 5.9% of patients in the chemoRT plus adjuvant chemotherapy group. No patients with sustained clinical CR developed distant recurrence within 12 months.”

http://www.primeoncology.org/primelines ... al-cancer/
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: 118
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 Jun 03, 2018 12:49 am

Today is the three year anniversary of my post-chemoradiation rectal exam, and determination of the effectiveness of the treatment. All the Drs I saw before treatment had told me I was going to lose my sphincter, so I was just hoping that by some miracle the tumor had shrunk far enough away, and I would qualify for sphincter saving surgery.

To my amazement my colorectal surgeon told me I'd had a complete clinical response and, instead of surgery, offered me the newly introduced W&W program. I know I'm both lucky and blessed to have been in the right place at the right time, and to have had this outcome. Three years later it certainly looks like the right decision for me.

Hopefully others just beginning their journey can look at my example and know there is always hope, and light at the end of the tunnel.
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

Eleda
Posts: 182
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

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

Postby Eleda » Mon Jun 04, 2018 12:52 pm

Congratulations
and hopefully many many more clear years ahead
Adele X
SWF, 47
Mom to 3 sons 6/8/12
Dec4th 2017 colonoscopy for minor intermittent rectal bleeding during Summer
CEA 4.4
DX T3 L3C M0 2.5/3 cm above AV.
JAN 3RD started 1650mg Zelda 2xday, with 28 radiation
Did tagamet 800mg daily and 75mg IV VIT C WEEKLY UNTIL SURGERY and
Tumor reduce by 80% 1 LN still remaining
TATME May10th, temp illeostomy
10/07/2018 CEA 3
MMR INTACT
Began FOLFOX July 10th
24/08/2018 Allergic reaction so next infusion lucovorin and 5fu
CEA 4
Second attempt with oxi aug 12th

hawkowl
Posts: 116
Joined: Sun Dec 14, 2014 5:29 am
Location: MN/FL

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

Postby hawkowl » Tue Jun 05, 2018 11:54 pm

prs wrote: Hopefully others just beginning their journey can look at my example and know there is always hope, and light at the end of the tunnel.


Thats' wonderful! I was diagnosed about the same as you, and had a similar story (except that I decided against w/w and went through with the surgery). I too feel incredible lucky to be where a am today...wishing you many many more anniversary years in your future!
Dx 12/2014 T3N2MX (iliac nodes) 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.

Totally disabled due to oxaliplatin induced neuropathy and dysautonomia

prs
Posts: 118
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 » Wed Jun 06, 2018 12:07 pm

Thank you @Eleda and @hawkowl :)
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

Rikimaroo
Posts: 151
Joined: Tue Dec 20, 2016 8:48 pm

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

Postby Rikimaroo » Thu Jun 07, 2018 5:16 pm

I too had complete response to chemo radiation, my mistake was not doing chemo afterwards and I knew I should of. Big mistake cause it cost me more time with dealing with this crap, went from stage 3 to stage 4 one solitary metastasis to liver. I got all the surgeries done and right now I am cancer free (knock on wood). Do another six rounds of FOLFOX, hate is so much, but necessary. throwing everything at it this time.
Diagnosed at 38 y/o male, 3 kids 7,9,14 - Now 39.
RC T3N1M0
Chemo Rad, CCR - W&W 5/2017
Local Recurrence, discuss options 11/26/2017
CT Scan 11/2017 Liver Met 5.5cm Stable, Stage IV
Port Scheduled for 12/15/2017, folfox/oxapalatin + avastin starts on the 12/20/2017
Blood Clot in Neck 1/16/2018, stop avastin, continue FolFox
TME/Liver Resect 4/3/2018
Biopsy Results 0/8 Lymph nodes clear, margins not clear, CEA now .8,
Chemo Finish 8/15/2018
Reversal October 17th 2018

prs
Posts: 118
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 Jul 31, 2018 1:09 pm

Here's a link to a paper giving prospective, comparative results for W&W patients at the Kaiser facility where I am being treated.

https://www.journalacs.org/article/S1072-7515(17)30680-4/fulltext

Pretty good results I think!!
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

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 » Thu Sep 13, 2018 8:23 pm

Hi guys, haven't been here for while.
Just got in my email today latest article from Memorial Sloan Kettering Hospital from NY.
It's kind of interesting, main subject is :

Sidestepping Rectal Cancer Surgery with Total Neoadjuvant Therapy

"Our analysis showed that patients in the TNT group received higher percentages of the planned oxaliplatin and fluorouracil prescribed doses compared to the chemoRT with planned adjuvant chemotherapy group. The complete response rate — which included pathological complete response in those who underwent surgery and clinical complete response for at least 12 months post-treatment in patients who did not have surgery — was 36 percent in the TNT group compared to 21 percent in the chemoRT with planned adjuvant chemotherapy group. (1)Patients with stage II tumors had a higher complete response rate of 54 percent (23 of 43 patients) compared to 33 percent (87 of 265 patients) with clinical stage III tumors. Pathological complete response rates were in line with previous results from a multicenter study led by MSK and published in The Lancet, which ranged from 25 to 38 percent. "

https://www.mskcc.org/clinical-updates/sidestepping-rectal-cancer-surgery-total-neoadjuvant-therapy?utm_source=OncoNotes-9-13-18&utm_medium=email&utm_content=ColorectalCancer&utm_type=ClinicalResearch

Complete explanation of stages:
https://www.cancer.net/cancer-types/colorectal-cancer/stages
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: 118
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 Sep 14, 2018 9:55 am

Welcome back @mozart13 !!!

Hope you are still NED, and your body is recovering from the chemo.
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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