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

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NHMike
Posts: 1226
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Mon Nov 27, 2017 9:45 am

I asked my surgeon about downstaging and she said that they're leaving it at 3 and that I'd do 5FU or Xeloda to follow up but that I might not need Oxaliplatin. But that's up to the oncologist to decide. There was no doubt on adjuvant chemo.
6/23/17: ER rectal bleeding; Colonoscopy
7/13: Stage 3B rectal. T3N1bM0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/31-9/8: Xeloda 3,400 mg/day+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
MSS, KRAS G12D
10/6: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/30: LAR, Temp Ileostomy, Path Complete Response
12/20: Started CapeOx

Rikimaroo
Posts: 112
Joined: Tue Dec 20, 2016 8:48 pm

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

Postby Rikimaroo » Mon Nov 27, 2017 11:07 am

Just had my mtg with doctor. Cea is at 500 and I am freaking out. He said not to panic it does not mean spread but I am still good to get surgery with same path as before. Temp ileostomy. Reversal. I will do chemo just because even if he says I don’t need too.

My cea was 26 12/2016 37 3/2017 3.5 April 2017 and now 500 in November 2017.

Doing pet and cat scan n xt week MRI Wednesday this week. So worried I might of hurt my chances by doing watch and wait
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, more chemo and possible radiation, outlook looks good, staying positive!!

Rikimaroo
Posts: 112
Joined: Tue Dec 20, 2016 8:48 pm

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

Postby Rikimaroo » Mon Nov 27, 2017 1:00 pm

I was just texting my radiation oncologist and asked him if doing CEA test right after a flex sig if the drugs would of affected the results he said not so much the drugs but manipulating and doing biopsies in that area can.

He said I should do a retest to be sure. Going to retest this week and see what I get.
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, more chemo and possible radiation, outlook looks good, staying positive!!

mozart13
Posts: 133
Joined: Fri Dec 09, 2016 7:38 pm
Location: Toronto

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

Postby mozart13 » Mon Nov 27, 2017 1:13 pm

Sorry to hear about CEA Riki, and reccurance. Like Susie said, wonder if consolidation therapy would make the difference.
Such a spike, your radiologist might be right.
Dr. Angelita Habr-Gama did mention in one of conferences, wandering if there is more harm than good in this kind of approach, calling it for more standard approach.
Chemo after surgery is very good idea.
Do you have any symptoms like flat stool or blood in stool, something simillar before chemo/rad?
I am going for scope and MRI in jan., will have some blood work in dec., my onco said that we wont worry much about CEA, as it is fresh post xeloda, 2 months after, and is expected to climb, apparently xeloda or 5fu bumps up CEA.
Not sure how long for chemo to wear off, but I can still feel it.
Surgeon did mention posibilities of biopsy in jan.
Found some study where CEA can have spike even 4 months after chemo.
Good luck with retesting.
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!

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susie0915
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Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

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

Postby susie0915 » Mon Nov 27, 2017 2:17 pm

NHMike wrote:I asked my surgeon about downstaging and she said that they're leaving it at 3 and that I'd do 5FU or Xeloda to follow up but that I might not need Oxaliplatin. But that's up to the oncologist to decide. There was no doubt on adjuvant chemo.

Xeloda only would be nice. My oncologist did Xelox. I don't know what determines what is given during adjuvant therapy. I asked about Xeloda only, and my oncologist preferred I did Xelox, so I went ahead. Most of my side effects came from the oxi. I did 6 rounds. Sounds like everything is going pretty well for you.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoid/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nod
7/17 no change lung nod
10/17 Clear pel/abd CT
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, clear CT pel/abd/lung nod no change

NHMike
Posts: 1226
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Mon Nov 27, 2017 2:56 pm

susie0915 wrote:Xeloda only would be nice. My oncologist did Xelox. I don't know what determines what is given during adjuvant therapy. I asked about Xeloda only, and my oncologist preferred I did Xelox, so I went ahead. Most of my side effects came from the oxi. I did 6 rounds. Sounds like everything is going pretty well for you.


I guess that it's all relative. I'm kind of climbing the walls because of all the things that I can't do normally. And I have a few aches and pains and I'm trying to figure out how to get better bag support. I'm heading over to the Ostomy forums to see what's recommended for support belts or maybe one-piece bags that fit closer to the skin.
6/23/17: ER rectal bleeding; Colonoscopy
7/13: Stage 3B rectal. T3N1bM0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/31-9/8: Xeloda 3,400 mg/day+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
MSS, KRAS G12D
10/6: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/30: LAR, Temp Ileostomy, Path Complete Response
12/20: Started CapeOx

skb
Posts: 30
Joined: Tue Mar 28, 2017 2:00 pm

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

Postby skb » Wed Dec 13, 2017 11:14 am

Rikimaroo,
I am feeling sorry, sad, scared almost freaking out hearing your local recurrence and high CEA. I am praying and wishing the best for you.

I was put on wait and watch too in August 2017 after showing complete response (absence of primary tumor, just scar tissue left and no mets identified in CT scan). However I had 8 chemo IV cycles after that (Aug to December). 5FU plus oxaliplatin for four rounds. Only 5FU for remaining cycles. The CT scan from few days ago (Dec 2017) revealed no mets but there is mention of a liver enhancement in the CT report that it says is likely a 'vascular shunt''.

CEA result from few days ago came in at <0.5ug/L but my CEA was never elevated, not even at initial diagnosis. So it is not a useful or reliable indicator for me.

The recurrence of disease in the case of Jay in UK and Rikimaroo makes me worried about local recurrence and the usefulness of wait and watch protocol. Studies do say that upto 30% people in wait and watch experience recurrence. However among the people in this forum on wait and watch, it seems to be trending above 30%
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 where tumor used to be reveals no invasive adenocarcinoma
8/09/17: MRI reveals no primary tumor left
8/11/17: placed in 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 says no tumor
4/4/18 MRI reveals no tumor still

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susie0915
Posts: 759
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

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

Postby susie0915 » Wed Dec 13, 2017 1:04 pm

It is scary. I was told after chemo/radiation all that was left was scar tissue as well. No mets and a clean pet scan. The surgeon maybe no chemo after surgery, didn't offer watch and wait. I prob would've done it I think if knew it could be an option. After surgery, even though margins were clean, no lymph nodes there was minimal residual cancer cells in the tissue where tumor was. So chemo was recommended. It is a very tough decision, maybe doing the chemo after the preadjuvant therapy is the key.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoid/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nod
7/17 no change lung nod
10/17 Clear pel/abd CT
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, clear CT pel/abd/lung nod no change

kenq
Posts: 1
Joined: Wed Dec 13, 2017 2:04 pm

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

Postby kenq » Wed Dec 13, 2017 2:13 pm

Hi all,
My first post here :). I am currently living in Brazil, and in a situation similar to the OP's: Stage 3B CRC starting to impinge on the sphincter. Surgery now would mean losing my anus. I have been prescribed 6 weeks of Xeloda and IMRT radiotherapy. The hope is there will be a complete response, or that the tumour will shrink at least enough to give margins for surgery which will be able to save the sphincter and anus. If there is a complete response, my doctor is willing to try the watch and wait strategy.

I am reading and researching as much as I can to discover ways in which I might be able to avoid the colostomy. If I have to have it, I can accept that and have peace with it. But as long as there is a small chance, I'd like to try as much as I can to avoid it! :)


---------
diagnosed Oct 2017

Rikimaroo
Posts: 112
Joined: Tue Dec 20, 2016 8:48 pm

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

Postby Rikimaroo » Wed Dec 13, 2017 2:38 pm

I agree with doing chemo after the neoadjuvant therapy is the best approach. Had I did what Mozart and PRS did which is chemo after, maybe I would not be in this predicament. Hindsight is 20/20. It's all very scary. The thing that might be worse is if I did the surgery and the liver met appeared, then my family would of been really upset. Either way if I had to do this all over again, I would definitely opt for Chemo after the rest period of doing neoadjuvant chemo.

I hope you never get a recurrence and move on with your life.
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, more chemo and possible radiation, outlook looks good, staying positive!!

User avatar
susie0915
Posts: 759
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

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

Postby susie0915 » Wed Dec 13, 2017 3:14 pm

It's hard to move on with your life. I have a small lung nodule being watched and I did every phase of the treatment. There is never a guarantee, and I have a scan coming up in January to check the nodule and anxiety is starting to begin. With all the follow up tests and appointments it's always in my head. You made the best decision for you at the time, and you can become NED once again. I know it's hard but try and stay positive.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoid/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nod
7/17 no change lung nod
10/17 Clear pel/abd CT
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, clear CT pel/abd/lung nod no change

Rikimaroo
Posts: 112
Joined: Tue Dec 20, 2016 8:48 pm

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

Postby Rikimaroo » Thu Dec 14, 2017 10:13 am

I also have a 4.5mm lung nodule that there keeping an eye on. It wasn't there last year december when we did a scan. Hopefully after chemo starts it goes away, or its nothing. Port getting installed tomorrow. Nervous!!
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, more chemo and possible radiation, outlook looks good, staying positive!!

mozart13
Posts: 133
Joined: Fri Dec 09, 2016 7:38 pm
Location: Toronto

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

Postby mozart13 » Wed Jan 17, 2018 2:05 pm

Just had MRI and colonoscopy this week. All negative.
It’s been year since I finished chemo/rad.
Not sure if that made much difference, but when they did radiation year ago, they focused on lymph nodes, and nailed it!
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!

User avatar
susie0915
Posts: 759
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

~

Postby susie0915 » Wed Jan 17, 2018 2:41 pm

Great news!
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoid/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nod
7/17 no change lung nod
10/17 Clear pel/abd CT
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, clear CT pel/abd/lung nod no change

Rikimaroo
Posts: 112
Joined: Tue Dec 20, 2016 8:48 pm

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

Postby Rikimaroo » Wed Jan 17, 2018 9:01 pm

Wonderful new, wish I did chemo after CCr
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, more chemo and possible radiation, outlook looks good, staying positive!!


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