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

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Jolene
Posts: 134
Joined: Wed Jan 23, 2019 10:17 am

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

Postby Jolene » Mon May 20, 2019 12:39 pm

Dear WW-ers,

In my first Xelox cycle, I experienced a 2 day constipation in the first week of my first cycle. I took Duphlac syrup and was prescribed Domeperidone and it was resolved immediately.

I'm in the midst of my second Xelox cycle (second week) and have been experiencing some more constipation and this time with lower abdominal cramps. The constipation resulted in some pellet poops despite my continuous intake of the medication. It resolved the constipation on some occasion and not on others.

As you know for us WW-ers, there's always the thought of recurrence at any point ! Just wondering if anyone experienced anything similar and could care to share ?

It seems like any kind of strange bowel movements is gonna send alarm bells ringing in me for the next 5 years of my life - if I actually get to that without radical surgery !

I'm not due to see the doc in another 5 days... just want to seek some thoughts and opinions here.
Dx @ 39 F, married
Nov 18 - Scope + MRI + CT = 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 - Complete clinical response. Surgery on hold. 6 cycles of Xelox.
Aug 19 - Completed 6 cycles of Xelox.
Oct 19 - Tests/scans all clear / Continue to wait and watch

mozart13
Posts: 152
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 May 20, 2019 12:54 pm

Jolene wrote:Dear WW-ers,

In my first Xelox cycle, I experienced a 2 day constipation in the first week of my first cycle. I took Duphlac syrup and was prescribed Domeperidone and it was resolved immediately.


I had same problem, it was most likely caused by all those extra meds that you getting, like anti nausea and steroids. Some people go opposite, but we are all different. Also I had cramps in my leg muscles. On the very same day of chemo, would take magnesium, as soon as I got home, that resolved constipation and cramps.

Good luck!
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 the forum , so if this is not updated it means I remain negative!
Wish good luck to all!

prs
Posts: 157
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 May 20, 2019 2:10 pm

My problem during chemo was exactly the opposite of constipation. Sometimes with the nausea I felt like a human fire hose at both ends! :D

I had a different doctor for my last colonoscopy, and part of his prep was to drink a 10oz bottle of magnesium citrate the day before beginning the regular MiraLax routine. It worked really well, much easier and faster acting than other kind of laxative I've ever taken. It's also very inexpensive and well worth trying if you are suffering from constipation.
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

NHMike
Posts: 2265
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Mon May 20, 2019 2:13 pm

prs wrote:My problem during chemo was exactly the opposite of constipation. Sometimes with the nausea I felt like a human fire hose at both ends! :D

I had a different doctor for my last colonoscopy, and part of his prep was to drink a 10oz bottle of magnesium citrate the day before beginning the regular MiraLax routine. It worked really well, much easier and faster acting than other kind of laxative I've ever taken. It's also very inexpensive and well worth trying if you are suffering from constipation.


I had the opposite problem though I was getting Oxaliplatin with the Xeloda and maybe the two of them means the runs.
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

Jolene
Posts: 134
Joined: Wed Jan 23, 2019 10:17 am

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

Postby Jolene » Mon May 20, 2019 7:50 pm

Hi all - thanks for sharing. Feeling a little better this morning checking into all your response.

My doc was much more concerned about diarrhea over the past few weeks than constipation !

I'm someone who hardly get constipation and the only constant constipation I ever experienced was one week before I got diagnosed with rectal cancer. You can see why I'm feeling nervous about experiencing constipation again !!! :oops:

Interesting about magnesium, will speak to my doc about it !

Mozart - cramps in the leg sounds unusual ! It's the first I've heard of !
Dx @ 39 F, married
Nov 18 - Scope + MRI + CT = 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 - Complete clinical response. Surgery on hold. 6 cycles of Xelox.
Aug 19 - Completed 6 cycles of Xelox.
Oct 19 - Tests/scans all clear / Continue to wait and watch

NHMike
Posts: 2265
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Mon May 20, 2019 8:30 pm

mozart13 wrote:
Jolene wrote:Dear WW-ers,

In my first Xelox cycle, I experienced a 2 day constipation in the first week of my first cycle. I took Duphlac syrup and was prescribed Domeperidone and it was resolved immediately.


I had same problem, it was most likely caused by all those extra meds that you getting, like anti nausea and steroids. Some people go opposite, but we are all different. Also I had cramps in my leg muscles. On the very same day of chemo, would take magnesium, as soon as I got home, that resolved constipation and cramps.

Good luck!


I have a huge bottle of Mg tablets in the bathroom. I typically take 400 Mg/day. Sometimes up to 800 Mg/day. If I'm fasting and working out, then I need the electrolytes.

My oncologist sometimes put in Magnesium with the Oxaliplating infusion. I think that the infusion washes your electrolytes out.
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

Jolene
Posts: 134
Joined: Wed Jan 23, 2019 10:17 am

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

Postby Jolene » Fri May 24, 2019 6:21 am

Seen my doc - he had prescribed me some pro-biotics to start off !! Let's see how it goes !
Dx @ 39 F, married
Nov 18 - Scope + MRI + CT = 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 - Complete clinical response. Surgery on hold. 6 cycles of Xelox.
Aug 19 - Completed 6 cycles of Xelox.
Oct 19 - Tests/scans all clear / Continue to wait and watch

prs
Posts: 157
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 05, 2019 1:34 pm

Just wanted to report this week marks the four year anniversary of my Complete Clinical Response and being offered the W&W program. :!: :D

I had a follow up rectal exam back in April. As usual my surgeon had one of her residents in tow. I remarked to him that Dr McLemore had literally saved my ass. That generated much laughter, and the suggestion that we needed a Tee shirt or coffee cup inscribed "KAISER PERMANENTE SAVED MY ASS" :lol: :lol:

This journey is a difficult one, but I know that staying positive and never giving up hope helps a lot along the way. My case shows there is the possibility of light and laughter 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

mozart13
Posts: 152
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 Jun 05, 2019 4:07 pm

congrats prs, that is great news !!!
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 the forum , so if this is not updated it means I remain negative!
Wish good luck to all!

prs
Posts: 157
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 05, 2019 10:39 pm

Thank you, mozart13 :!:
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

User avatar
Green Tea
Posts: 202
Joined: Mon Oct 24, 2016 10:48 am
Location: Nusa Tenggara

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

Postby Green Tea » Thu Jun 06, 2019 2:58 am

prs wrote:Just wanted to report this week marks the four year anniversary of my Complete Clinical Response and being offered the W&W program. :!: :D

I had a follow up rectal exam back in April. As usual my surgeon had one of her residents in tow. I remarked to him that Dr McLemore had literally saved my ass. That generated much laughter, and the suggestion that we needed a Tee shirt or coffee cup inscribed "KAISER PERMANENTE SAVED MY ASS" :lol: :lol:

This journey is a difficult one, but I know that staying positive and never giving up hope helps a lot along the way. My case shows there is the possibility of light and laughter at the end of the tunnel.


Jolene
Posts: 134
Joined: Wed Jan 23, 2019 10:17 am

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

Postby Jolene » Sun Jun 16, 2019 8:55 am

prs wrote:Just wanted to report this week marks the four year anniversary of my Complete Clinical Response and being offered the W&W program. :!: :D

I had a follow up rectal exam back in April. As usual my surgeon had one of her residents in tow. I remarked to him that Dr McLemore had literally saved my ass. That generated much laughter, and the suggestion that we needed a Tee shirt or coffee cup inscribed "KAISER PERMANENTE SAVED MY ASS" :lol: :lol:

This journey is a difficult one, but I know that staying positive and never giving up hope helps a lot along the way. My case shows there is the possibility of light and laughter at the end of the tunnel.


Congrats PRS !!! This thread has given a number of us WW-ers so much hope and knowledge !! May you get into your 5th year of CCR !!!
Dx @ 39 F, married
Nov 18 - Scope + MRI + CT = 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 - Complete clinical response. Surgery on hold. 6 cycles of Xelox.
Aug 19 - Completed 6 cycles of Xelox.
Oct 19 - Tests/scans all clear / Continue to wait and watch

Jolene
Posts: 134
Joined: Wed Jan 23, 2019 10:17 am

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

Postby Jolene » Sun Jun 16, 2019 9:11 am

I'm into my 4th cycle of Oxy now.... CCR isn't without it's problems but I understand that in the grand scheme of things, it provided a ray of light of not having to undergo radical surgery and for that I'm grateful. Interim blood tests and MRI scans / rectal site check have been positive and doing well so far.

A number of things that I'm trying to get through at the moment...

Ridiculous mood swings - it's difficult to tell whether it's due to to the cocktail of medication or due to the early menopausal induced by earlier pelvic radiation. I can laugh one moment and then break down next. The oncologist is hesitant to prescribe any anti-depressant but have advised to increase my intake of lorazapem for now. Seeing as I only have 2 more cycles to go, I should try to bear with it instead of getting started on any anti-depressant.

Constipation - Resolved by taking Domperidone, probiotics tablets and Duphalac. Thank god.

MRI tests - Geeeez. Lying down for 1.5 hours each time and not moving is sort of torturing

Blood tests - Needles, needles and more neeedles ! :(

Staying fit - Time needs to be taken out to stay as fit as possible but it's so damn hard with all that is going on. I know this sounds like a whiny statement but because on the outside WW-ers seems perfectly fine, however on the inside (for me at least) - all sort of mental exhaustion creeps in. I'm quite fortunate not to have suffered much physical side effects. My taste bud is still intact and my numbness or tingly sensation is still fairly manageable but damn, the mood swings and mental capacity to stay well is just so hard to deal with !

Paperwork - Endless medical paperwork and insurance disputes ! No explanations needed as I'm sure everyone has been through it.

IV infusion pain - My left arm has reached its pain threshold finally. I will be switching to the right arm for my 5th and 6th cycle.

Question - Should I have rotated my arms much earlier ? The reason I have been resistant to using my right arm is because it's my dominant arm. The idea of being "handicapped" for a few days after infusion isn't really all that appealing and hence I insisted on using my left arm until this 4th cycle where it reaches the pain threshold.

Should I use my right arm for the 5th and then back to the left again for the 6th ?
Dx @ 39 F, married
Nov 18 - Scope + MRI + CT = 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 - Complete clinical response. Surgery on hold. 6 cycles of Xelox.
Aug 19 - Completed 6 cycles of Xelox.
Oct 19 - Tests/scans all clear / Continue to wait and watch

prs
Posts: 157
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 16, 2019 1:19 pm

Jolene, my MRIs only take 45 minutes, I wonder why yours take 1.5 hours?

For my last few infusions I had them switch arms half way thru the infusion. that might be something for you to consider.

Yes, the treatment is bitch to get thru, and be prepared for it to get worse before it's finished. You just have to grit your teeth and push thru to the end. However once it's over you will feel so good that you made it, and did everything within your power to beat this disease!!!
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: 134
Joined: Wed Jan 23, 2019 10:17 am

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

Postby Jolene » Sun Jun 16, 2019 9:43 pm

prs wrote:Jolene, my MRIs only take 45 minutes, I wonder why yours take 1.5 hours?

For my last few infusions I had them switch arms half way thru the infusion. that might be something for you to consider.

Yes, the treatment is bitch to get thru, and be prepared for it to get worse before it's finished. You just have to grit your teeth and push thru to the end. However once it's over you will feel so good that you made it, and did everything within your power to beat this disease!!!


Hi PRS - My very first routine MRI took only 45 mins too but ever since I was placed on WW, they said they needed finer cuts of images to make sure they do not miss out on anything ! So it takes another 30 -45 mins more depending on how fuss the radiologist docs are with the images.

Thanks for the arm switching tip but the idea of inserting a needle into a new arm mid-way isn't very appealing though ! The needle removal procedure usually hurts more than the insertion as they have to remove all the tape that is stuck around the needle. I'm on a 4 hour infusion which is usually fine for the first 3 hours, only the last hour is a bit of a torture in my 4th cycle. My prior 3 cycles have been okay.

How do you mean prepare for it to get worse before it's finished ? I'm left with 2 more cycles and will be using a new arm for that, I'm hoping nothing too bad will happen !!

I haven't been particularly struck with fatigue as yet except for the first 3-4 days after infusion. But yes, it's definitely a bitch to get thru but mostly mentally and psychologically for me though !
Dx @ 39 F, married
Nov 18 - Scope + MRI + CT = 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 - Complete clinical response. Surgery on hold. 6 cycles of Xelox.
Aug 19 - Completed 6 cycles of Xelox.
Oct 19 - Tests/scans all clear / Continue to wait and watch


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