Is LARS a foregone conclusion? Anyone doing W&W?

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NHMike
Posts: 1907
Joined: Fri Jul 21, 2017 3:43 am

Re: Is LARS a foregone conclusion? Anyone doing W&W?

Postby NHMike » Wed Nov 28, 2018 4:12 pm

lakeswim wrote:Curious about lack of chemo. I thought W&W involved everything upfront. But I’m still learning so perhaps your tumor hadn’t spread beyond your rectum (like mine has - hence the chemo and chemo/Rad up front).

I’m also curious if the radiation effects get WORSE over time as it continues to work on the tumor? Because I’m a week out from the end of radiation and my stool is better than it was BEFORE I was diagnosed. (Still a little concern about urgency but I think it’s more paranoia.)

My tumor is apparently large too (though it diminished a bit with chemo).

Yet it’s interesting that the RadOnc said the radiation only continues to work on the tumor and normal tissues should start healing right away. I wonder if location plays a big part in this or it’s just the individual.


The radiation shrinks the tumor but it takes a while to get started and then it gets going to the point where it makes passing easier. I noticed this one to two weeks before finishing as well. The pain from the radiation's effects were there and they continued for two weeks. But the time after those two weeks were the best - the tumor was so small it didn't slow things down and the effects from the radiation were healed up.
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; 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, 2/12 1.2
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
2/19: Clean CT

prs
Posts: 140
Joined: Sat Dec 12, 2015 7:09 pm
Location: Central California

Re: Is LARS a foregone conclusion? Anyone doing W&W?

Postby prs » Wed Nov 28, 2018 8:06 pm

My surgeon encouraged me to start a course of chemo as soon as she offered, and I accepted, the W&W program. She has since told me the data shows that both W&W and surgery patients have higher rates of recurrence if they don't do mop up chemo.

The standard mop up chemo for all rectal cancer patients is six months of Folfox or Xelox, but I seem to remember there have been trials showing shorter courses are effective. @lakeswim if you do go W&W, it may be possible for you to take a shorter course as you already did chemo prior to chemoradiation.

I didn't have any surgery, but I had issues with urgency and dashes to a bathroom for about a year after my treatment was completely finished. I think the combination of radiation and chemo just leaves your rectum in a supersensitive state. It's three years now since treatment finished and I would say I'm about 95% back to normal, but I still like to know the location of the nearest bathroom!
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: 192
Joined: Sat Mar 31, 2018 9:37 am

Re: Is LARS a foregone conclusion? Anyone doing W&W?

Postby lakeswim » Wed Nov 28, 2018 8:34 pm

I thought the point of FOLFOX chemo up front (I did 4 months) followed by XELODA/radiation (in other words - the TNT strategy) is to get the chemo done when you could tolerate it better (avoiding having to do it after surgery) - and see if shrinks the tumor in order to avoid surgery.

(I have to say - I can’t imagine going through chemo after radiation AND surgery - esp while healing. All you folks who have done this are a tough bunch!)

Does anyone know of any patients who have done W&W (after having done TNT) and then were asked to do MORE chemo (a second time) (Maybe I should pose this ? on the W&W thread.)

My Onc team has never mentioned this possibility. It was: the chemo and then chemo/radiation shrinks the tumor and you get W&W option or surgery. Or it doesn’t shrink enough, and you get surgery option only. (And again, the point of chemo upfront is so you don’t have to deal with it post surgery while healing. So no “mop up” chemo because you’ve already done this step - just earlier.)

So, in other words, it’s just the mop up chemo done up front instead.

I may be misunderstanding your point - or totally wrong - as I’m still learning - but this is how I understand it based on what I’ve read and been told.

It is just a very new approach (and they are also trying the other way - chemo/radiation first, then chemo, then w&w or surgery) so when I tell people who have been through it with the very established strategy (radiation, surgery, chemo), it often throws them off.
50 - F
Mom to 2 teens
RC - dgns 3/18 at age 49
Adenocarcinoma
10-11 cm frm anal verge ("large")
Stage 3a - T4N0M0
FOLFOX May -Sept '18
Capecetabine + Radiation - 28 sessions - Oct - Nov 2018
Jan 19 - Tumor gone but determining next steps

Big Jay
Posts: 33
Joined: Fri Jun 17, 2016 5:41 pm
Location: Baltimore, MD

Re: Is LARS a foregone conclusion? Anyone doing W&W?

Postby Big Jay » Thu Nov 29, 2018 10:55 pm

I make the W&W call two years ago. To me it seems like just last week but, in terms of medical advancement, that's ages ago. I think that a lot has changed in the past few years.
DX at 45yo 6/9/16, 2.4cm tumor, 9cm from Anal Verge, 6/27/16
Clinical staging IIIC, CEA 3.1 7/1/16
30x Chemorad 8/5/16 - 9/16/16
CT/MRI/Scope => CCR 11/1/16... Rolling the dice on Watch & Wait
Snake Eyes: Tiny regrowth at scar 11/1/17
LAR 1/17/18: Path = 3mm tumor, 0/12 nodes Med Onc doesn't recommend chemo.
Reversal 4/17/18

NHMike
Posts: 1907
Joined: Fri Jul 21, 2017 3:43 am

Re: Is LARS a foregone conclusion? Anyone doing W&W?

Postby NHMike » Thu Nov 29, 2018 11:07 pm

Big Jay wrote:I make the W&W call two years ago. To me it seems like just last week but, in terms of medical advancement, that's ages ago. I think that a lot has changed in the past few years.


My oncologist was pretty eager to share information on Big Data and the impact in treatment and how fast things can change based on the previous quarter's data. At the time, though, I was just trying to absorb that I had cancer and that this was the course of treatment and I was thinking on how it would impact my life. The big data aspect did interest me down the road and then I saw all of the trials on this board. So it's amazing to watch the process. CRC is a nice area to work on because there is so much data and they can get feedback from trials fairly quickly.
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; 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, 2/12 1.2
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
2/19: Clean CT

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Sophy
Posts: 250
Joined: Fri May 27, 2011 2:46 am
Location: New Zealand

Re: Is LARS a foregone conclusion? Anyone doing W&W?

Postby Sophy » Sat Dec 01, 2018 1:17 pm

I had my reconnection with a j pouch 7 years ago and for most of that time I have had digestion issues, diarrhoea, constipation, stomach cramps, vomiting. I have gradually eliminated foods that irritate and ended up with a list of things I cut out -

No fruit except a few berries and limited amount of cooked tomato (like a spoon of ketchup)
No raw veggies
No wheat flour or any other grains
No root veggies but plenty of cooked leafy veggies
No canola or sunflower oil

I had an AHA moment earlier this year when I realised what I was eating was almost the same as a keto diet. So I did some research on keto recipes online and started eating that way full time, cutting out sugar too.

Within a week my digestion had returned to pre-cancer. No constipation or diarrhoes, no pains or cramping. I hadn't expected this but it was amazing. From daily laxatives and hours on the toilet I haven't needed any medication in months.

A morbidly obese friend with fecal incontinence adopted the ketogenic diet to lose weight and told me that she has been completely continent on it, no bathroom issues at all (and she lost 5kg in 2 months so far and her cholesterol is down).

I know that many people would not want to eat such a restricted range of foods but it might be an option to consider if you do decide to have the reversal and encounter problems.

Sophy
dx T3N1M0 Feb 11 when children age 11, 7 and 2
Xeloda/rad March 11, LAR June 11 temp ileo
Xelox 6 rounds, NED
Lung mets Oct 13
Laser surgery Germany Jan 14. 3 mets left lung.
Laser surgery UK Jun and Aug 14 one met each lung, NED
Aug 14 Started Xeloda and Celebrex (ADAPT)
Oct 2018 CT shows still NED
Continuing ADAPT

del
Posts: 106
Joined: Thu Mar 03, 2016 11:21 pm
Location: Sydney, Australia

Re: Is LARS a foregone conclusion? Anyone doing W&W?

Postby del » Sun Dec 02, 2018 6:06 am

For what it's worth, I had an ultra-low resection with my entire rectum removed (tumour was 5cm above the anal verge), and while the first couple of months after the ileostomy reversal were tough (lots of immodium and adult diapers), I am pretty much back to normal now. I do lots of travelling, hiking, long distance running, scuba diving and swimming. I've gone on hiking trips, up to a week at a time, sleeping in tents without proper toilets and haven't had any problems. I did not have any radiation therapy, however, so that may be a factor.
Male, 33 @ dx, stage 1 RC (T1N0M0 0/29 LNs)
2016-02 - Cancerous polyp removed during colonscopy, 0.5 mm margin
2016-03 - ULAR & TME surgery, temp ileostomy
2016-04 - DVT, pulmonary embolism
2016-11 - Ileostomy reversal
2018-10 - Another DVT & PE
Clean CTs 2016-08, 2017-03, 2017-09, 2018-04, 2018-09

lakeswim
Posts: 192
Joined: Sat Mar 31, 2018 9:37 am

Re: Is LARS a foregone conclusion? Anyone doing W&W?

Postby lakeswim » Sun Dec 02, 2018 8:44 am

Thanks, Del. Such good news for you! Gives me hope - though I’ve had it all up front - chemo and then chemo/radiation. (Why didn’t you have radiation?)

Has anyone read WHY radiation is (reportedly) a factor in LARS? Or any studies that show it actually IS a factor? Folks on this forum state that radiation is a factor but I have seen no studies and one or two people who have had radiation have done okay. Just looking for info.

Thanks!
50 - F
Mom to 2 teens
RC - dgns 3/18 at age 49
Adenocarcinoma
10-11 cm frm anal verge ("large")
Stage 3a - T4N0M0
FOLFOX May -Sept '18
Capecetabine + Radiation - 28 sessions - Oct - Nov 2018
Jan 19 - Tumor gone but determining next steps

NHMike
Posts: 1907
Joined: Fri Jul 21, 2017 3:43 am

Re: Is LARS a foregone conclusion? Anyone doing W&W?

Postby NHMike » Sun Dec 02, 2018 9:47 am

lakeswim wrote:Thanks, Del. Such good news for you! Gives me hope - though I’ve had it all up front - chemo and then chemo/radiation. (Why didn’t you have radiation?)

Has anyone read WHY radiation is (reportedly) a factor in LARS? Or any studies that show it actually IS a factor? Folks on this forum state that radiation is a factor but I have seen no studies and one or two people who have had radiation have done okay. Just looking for info.

Thanks!


del was Stage 1 and that might be a factor. I had radiation and don't believe that I had many of the problems others have had. I did make sure to drink the 20 or 24 ounces before every session and that might have been a factor. Another could be that my tumor was very large and there was still some of it left so the tumor might have been getting the radiation instead of organs or other things beyond it or around it.

I've heard that some skin types may be more susceptible to radiation damage.
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; 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, 2/12 1.2
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
2/19: Clean CT

KMC21
Posts: 4
Joined: Thu Oct 25, 2018 8:14 am

Re: Is LARS a foregone conclusion? Anyone doing W&W?

Postby KMC21 » Sun Dec 02, 2018 9:50 am

Hi Lakeswim:

I just had my LAR surgery last week at Penn. Experts at Penn and Memorial Sloan Kettering were keen on skipping radiation because they said it would increase my risk of bowel issues later. They did not cite any evidence base but they were very worried about giving me radiation if I didn't really need it.

I HATE the temporary stoma so much that in hindsight I think I would have chosen chemo/RT followed by local excision and just rolled the dice. But what's done is done.

Good luck.

lakeswim
Posts: 192
Joined: Sat Mar 31, 2018 9:37 am

Re: Is LARS a foregone conclusion? Anyone doing W&W?

Postby lakeswim » Sun Jan 06, 2019 8:08 pm

del wrote:For what it's worth, I had an ultra-low resection with my entire rectum removed (tumour was 5cm above the anal verge), and while the first couple of months after the ileostomy reversal were tough (lots of immodium and adult diapers), I am pretty much back to normal now. I do lots of travelling, hiking, long distance running, scuba diving and swimming. I've gone on hiking trips, up to a week at a time, sleeping in tents without proper toilets and haven't had any problems. I did not have any radiation therapy, however, so that may be a factor.



I had TNT and just had my scans last week and met with my surgeon. I have a sigmoidoscopy on Monday and then the tumor board meets about my situation on Friday. They will decide whether I'm a candidate for WnW or whether I'll have LAR surgery in February.

Anyway, my surgeon basically came out and told me there was no question that, if I have surgery, I will have LARS and it will be lifelong. She didn't say why (I will get more info once I know I have surgery) but my guess is that it is because of where my tumor is.

Anyway, del, you had an ultra-low tumor. I am curious whether or not you had radiation as perhaps that is why you don't have LARS and why I will apparently definitely have it (as I had radiation).

Honestly, I don't know what I'll do if I have the option. Both scare the hell out of me. LARS sounds like a life-changing daily nightmare, but anxiety of the cancer recurring and possibly metast. coming bac is a different hell all together.
50 - F
Mom to 2 teens
RC - dgns 3/18 at age 49
Adenocarcinoma
10-11 cm frm anal verge ("large")
Stage 3a - T4N0M0
FOLFOX May -Sept '18
Capecetabine + Radiation - 28 sessions - Oct - Nov 2018
Jan 19 - Tumor gone but determining next steps

del
Posts: 106
Joined: Thu Mar 03, 2016 11:21 pm
Location: Sydney, Australia

Re: Is LARS a foregone conclusion? Anyone doing W&W?

Postby del » Thu Jan 10, 2019 10:30 pm

No, I did not have any radiation, pre or post-operative. You can use this online calculator for predicting your probability of having LARS:
https://www.pelicancancer.org/our-resea ... ch/polars/

Having said that, the calculator predicts I would have major LARS, so I guess everyone is different and it's hard to accurately predict.

I had to make the same decision about W&W vs surgery and I know it is a really difficult decision to make. I would suggest getting as many second opinions from other surgeons as possible.
Male, 33 @ dx, stage 1 RC (T1N0M0 0/29 LNs)
2016-02 - Cancerous polyp removed during colonscopy, 0.5 mm margin
2016-03 - ULAR & TME surgery, temp ileostomy
2016-04 - DVT, pulmonary embolism
2016-11 - Ileostomy reversal
2018-10 - Another DVT & PE
Clean CTs 2016-08, 2017-03, 2017-09, 2018-04, 2018-09

lakeswim
Posts: 192
Joined: Sat Mar 31, 2018 9:37 am

Re: Is LARS a foregone conclusion? Anyone doing W&W?

Postby lakeswim » Thu Jan 17, 2019 4:09 pm

Atoq wrote:I am Claudia, mentionwd by NHMike, I am Italian and live in Norway. I had reversal in June 2018 and don’t have problems except perhaps more frequency, but very manageable. My tumor was quite low (5 cm from anal verge) and it looked like it went through the colon, so surgery was necessary.
I did not do mop up chemo, so I am doing W&W in a way. :D

All the best

Claudia


Hi Claudia,
Thank you for your comment and sorry for the delay in response. I see your uterus was taken too. That is my future. What was your recovery like, given multiple organs were taken? (I have never had any major surgery so I am clueless!) My midwife asked me whether they will take the ovaries too as a precaution. I am not yet sure.
50 - F
Mom to 2 teens
RC - dgns 3/18 at age 49
Adenocarcinoma
10-11 cm frm anal verge ("large")
Stage 3a - T4N0M0
FOLFOX May -Sept '18
Capecetabine + Radiation - 28 sessions - Oct - Nov 2018
Jan 19 - Tumor gone but determining next steps

lakeswim
Posts: 192
Joined: Sat Mar 31, 2018 9:37 am

Re: Is LARS a foregone conclusion? Anyone doing W&W?

Postby lakeswim » Fri Jan 18, 2019 9:48 am

Big Jay wrote:I read far too many LARS horror stories and that lead me to go with W&W when I had a CCR. This was against Johns Hopkins' advice... but they don't really do W&W since it hasn't been clinically proven... JHH plays it safe. I did visit MSK and talked to Dr. Garcia-Aguilar (he's heading a nationwide W&W study) and he told me that I would be a good candidate so I decided to wait it out.

Unfortunately, after quarterly scans and flex-sigs, some "nodularity" reappeared at the old tumor scar exactly one year after my original CCR. Nothing showed on the scans but it wasn't worth the risk. So, I went in for the surgery. Luckily the pathology report only found a small 3mm tumor and no involved nodes. So, chemo was not recommended.

On a side note: While JHH doesn't recommend W&W, if their patients want to do it, they will provide the support. The surgeon I dealt with told me he's had a couple dozen patients on W&W. In his experience, so far, about half of them have had the cancer come back. This is quite a bit higher than the <20% that Habr-Gama is claiming. I know this surgeon's experience isn't a controlled clinical study but if I'd know about the 50% chance I'm not sure I would have gone for W&W in the first place.

As for the much feared LARS: I'm about 7 months out from reversal and things aren't that bad. Since the first hectic month after reversal things have gotten steadily better. I've only seriously crapped myself once (while climbing a steep hill trail and having ignored an earlier bathroom opportunity). I do get the occasional "peeping turtle" but as long as I don't eat massive meals, and head to the bathroom as soon as I feel the need, things are controllable. I follow my mother's advice from when I was a kid: if I'm about to go somewhere and I don't know when I'll see the next bathroom, even if I don't have to go now, I just do it anyway just to be safe.

In the end you need to know what level of risk you're comfortable with. Talk to your doctors and get a second opinion.. maybe even a third.. if that's what it takes. However, I wouldn't make the decision based on the fear of LARS. I think we all get it in one form or the other. For some it isn't too bad. Unfortunately some others have it worse. Luckily it sound like there are work arounds for the worst cases.


Not sure how I missed seeing this. Thanks, Big Jay. (I am a Hopkins alum - so I like your name.)
50 - F
Mom to 2 teens
RC - dgns 3/18 at age 49
Adenocarcinoma
10-11 cm frm anal verge ("large")
Stage 3a - T4N0M0
FOLFOX May -Sept '18
Capecetabine + Radiation - 28 sessions - Oct - Nov 2018
Jan 19 - Tumor gone but determining next steps

User avatar
Atoq
Posts: 329
Joined: Wed Oct 25, 2017 9:31 am

Re: Is LARS a foregone conclusion? Anyone doing W&W?

Postby Atoq » Fri Jan 18, 2019 11:45 am

lakeswim wrote:Hi Claudia,
Thank you for your comment and sorry for the delay in response. I see your uterus was taken too. That is my future. What was your recovery like, given multiple organs were taken? (I have never had any major surgery so I am clueless!) My midwife asked me whether they will take the ovaries too as a precaution. I am not yet sure.

My recovery went very well, it was not my first surgery, because I had an open surgery few months before to do a colostomy for a blockage at the end of the radiation period. So the ileostomy was not something totally new. It sucks a bit to remove ovaries, because you miss a lot of hormones and it is so controversial to take estrogen, but on the other hand you don’t have to worry about ovarian cancer. And radiation might have damaged ovaries anyway.

Right now I feel pretty normal, working full time, making plans for the future, playing music, running, etc. New scan in a week or so, but that’s life after cancer.

My advice is to be as fit as possible before surgery, and then walk as much as you can and see all small progresses as a success.


All the best

Claudia
45 year old, mother of 2
Dx rectal cancer 10.2017
At least T3N2aMX (suspect metastasis to one lung 8 mm)
Lynch neg
CEA 1.8
Neoadjuvant chemoradiotherapy Xeloda + 25x2 Gy
05.12.17 laparotomic surgery for blockage, colostomy
25.01.18 laparotomic lar, hysterectomy, ileostomy
05.03.18 core needle biopsy of lung, updated to stage IV
07.05.18 CAT scan, lung metastasis 11 mm
04.06.18 ileo reversal
26.06.18 wedge VATS
24.08.18, 31.02.19 CAT scan, ok
12.09.18, 06.02.19 scope, ok. CEA 1.6
19.11.18 clear coloscopy


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