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

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lakeswim
Posts: 206
Joined: Sat Mar 31, 2018 9:37 am

W&W-ers - "awareness" of rectum?

Postby lakeswim » Tue Apr 02, 2019 11:16 am

Hi Jolene. Good news that you have another option to consider!

I am intrigued by your 2 & 4 month schedule as I am on a 4 mo (DRE/flex sig) and 8 mo (MRI) schedule. Based on what I've read here, it seems those doctors/institutions newer to W&W do it more often. (Wish I were on that schedule!)

I did TNT (total neoadjuvant therapy) - so I did chemo first AND THEN chemo/rad. I do believe TNT was started with W&W in mind. They found that people tolerate chemo better prior to surgery and then they found they were seeing cCRs in some of these folks. (Someone correct me if I am wrong.) It is interesting to note that just after chemo (before chemorad), my tumor decreased "significantly." And I agree with others who state that the chemo is for the systemic or rogue cancer cells - not as much for the local tumor (though it clearly worked on my tumor!).

Not to change course, but I am interested in the W&W-ers on here.
* Do certain (spicy?) foods affect how your rectum feels?
* Do you have more "awareness" of your rectum since radiation?

I will be calling my doctor but my rectum has felt different lately. (It could be my anus - and hemorrhoids - hard to tell.) Obv., the tumor could be back, but I also wonder if it's radiation (which continues to work for a long while, right?) or if my rectum is just more sensitive to certain foods (e.g., I had curry for lunch Saturday and I had popcorn on Sat night. I recently had a very weird feeling there after eating sriracha sauce for the first time since radiation.) But I don't want to be naive either! Anyway, they said to call if I have any PAIN, but it's more an awareness and stinging (near anus) than anything so I don't know what to think. Like I said, I will call my doctor, but I'm curious what the other W&W-ers on this board have experienced.

Good luck with deciding your strategy, Jolene. It's so hard and nobody can make the decision for you.
50 - F - Mom
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 - MRI & flex sig show tumor gone
Mid-Feb 19 - MRI & flex sig show tumor gone
W&W

Phillypatient
Posts: 27
Joined: Sun Aug 05, 2018 11:28 am

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

Postby Phillypatient » Tue Apr 02, 2019 1:05 pm

Congrats Jolene!! You really did just win the lottery!! That said, you should absolutely do the chemo part to address any potential micrometastases. The xeloda dose is slightly higher than the one you took during radiation, so if you tolerated that okay, then that should not be such an issue. It's the Oxalipltin that seems to cause the majority of the issues in the chemo regimen. That said, you can dial back on the OXY if it starts causing intolerable side effects. My understanding is that the Xeloda does the real "heavy-lifting" in the regimen. You should definitely check with your oncologist about this.

Again, hearty congrats!!
Male 48, dx 10/16 rectal cancer t3n1m0
Chemorad Dec 16
Xelox Mar 17-Jul 17
Lar Sept 17
Reversal Dec 17

Rikimaroo
Posts: 184
Joined: Tue Dec 20, 2016 8:48 pm

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

Postby Rikimaroo » Tue Apr 02, 2019 6:38 pm

Jolene wrote:
Rikimaroo wrote:My opinion do the chemo. I had CCR and didn't do the chemo and it came back six months later in the same spot. I wish I did the Chemo, but honestly don't know if it would of done anything, but based on some others on this thread they did the chemo and it didn't come back.


Thanks Rikimaroo for the advise ! I will be proceeding with the chemo. I'm sorry to hear that it returned for you :( !

I assumed you were placed under a tight surveillance by the docs and how often were you required to return for the checks ? Was it discovered during those in between checks ?



Yeah to say its a bummer is an understatement. I just can't believe it came back, but I have to roll with the cards I am dealt. It was found during routine surveillance. Every 3 months I go in for a pet/mri/cea blood tests. All was looking good and then boo....I am still fighting and hoping that they can go back in and get it out of there for good. I would be happy with a permanent ileostomy, give it to me....because ileostomy reversal kind of sucks, it gets better, but still sucks.
RC T3N1M0
MSS - NRAS Mutation
Chemo Rad, CCR - W&W 5/2017
Recurrence 11/2017
CT Scan 11/2017 Liver Met 5.5cm Stable, Stage IV
Port Scheduled for 12/2017, folfox - avastin 12/2017
Blood Clot in Neck 1/2018, stop avastin, continue FolFox
LAR/Liver Resect 4/2018
Chemo Finish 8/2018
Reversal 10/18
CEA - 12/16 26.1, 1/17 32.2, 3/17 6.6, 11/17 500.5, 12/17 638.5, 1/3/18 424.8, 1/16/18 163.5, 1/31/18 62.2, 2/18 21.1, 3/18 14, 4/18 .8, 10/18 1.2, 12/18 3.2, 2/8 11.4, 3/6 22

lakeswim
Posts: 206
Joined: Sat Mar 31, 2018 9:37 am

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

Postby lakeswim » Tue Apr 02, 2019 9:52 pm

Rikimaroo...
I am so sorry to hear you had the local recurrence. I imagine that must have been devastating for you, but you sound like you have a positive attitude.

I am missing where you are in the process? Did you have your surgery? And I’m curious why you want a permanent ileostomy (have to read up on this option).

Also, I’m curious how long you went after chemo/rad before the recurrence was discovered? How long did you W&W? And, did you feel any difference in that area (any pain or discomfort?)? I know you said you went for a scheduled flex Sig and they found it....




Rikimaroo wrote:
Jolene wrote:
Rikimaroo wrote:My opinion do the chemo. I had CCR and didn't do the chemo and it came back six months later in the same spot. I wish I did the Chemo, but honestly don't know if it would of done anything, but based on some others on this thread they did the chemo and it didn't come back.


Thanks Rikimaroo for the advise ! I will be proceeding with the chemo. I'm sorry to hear that it returned for you :( !

I assumed you were placed under a tight surveillance by the docs and how often were you required to return for the checks ? Was it discovered during those in between checks ?



Yeah to say its a bummer is an understatement. I just can't believe it came back, but I have to roll with the cards I am dealt. It was found during routine surveillance. Every 3 months I go in for a pet/mri/cea blood tests. All was looking good and then boo....I am still fighting and hoping that they can go back in and get it out of there for good. I would be happy with a permanent ileostomy, give it to me....because ileostomy reversal kind of sucks, it gets better, but still sucks.
50 - F - Mom
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 - MRI & flex sig show tumor gone
Mid-Feb 19 - MRI & flex sig show tumor gone
W&W

ticktock10
Posts: 49
Joined: Fri Mar 07, 2014 3:49 am

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

Postby ticktock10 » Wed Apr 03, 2019 3:15 am

Congrats Jolene. As per the others, I would recommend the mop up chemo. It’s not much fun but it’s a small price to pay for peace of mind - not that you really have peace of mind when you’re on W&W, but it’s important to feel that you have given yourself the best chance of success.
Oct 2013 - Dx Stage 2/3 low rectal cancer
Dec 2013- 6 weeks neo-adjuvant chemo-rad
Apr 2014 - PET and MRI show 'complete response'
May 2014 - Chose 'watch and wait' instead of APR surgery
Jun-Sep 2014 - 'adjuvant' chemo - 5FU
Sep 2014 - PET and MRI clear

Jolene
Posts: 91
Joined: Wed Jan 23, 2019 10:17 am

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

Postby Jolene » Wed Apr 03, 2019 5:04 am

Weisssoccermom,

1. My doctor didn't recommend oxi for me as a stage II patient. The studies don't necessarily show that oxi for the stage II patient (with no negative prognostic factors) shows a significant increase over just the 5FU (or Xeloda) by itself. In addition, oxi carries risk of long term or permanent neuropathy. I didn't want to listen to the onc (wish I had) and tried the oxi. I had a HORRIBLE reaction the first time and it was stopped and I just proceeded with Xeloda. His initial recommendation was just Xeloda.


Oh dear... I am definitely having the Oxi together with Xeloda. I was okay with Xeloda but I have been reading that Oxi is the more deadly one ! You are one brave soul for being your own advocacy for so many things along the way ! Wished I was as mentally strong as you are !

2. Terry's cancer recurrence was caught relatively early and they thought they got it. It showed up in her lungs but remember that even one met can easily mean that there are more. I honestly don't remember Terry's surveillance schedule but I don't recall that it was much different from mine. Once cancer has a chance to spread....its more difficult (not impossible) to kill it all off.


Can I ask what were your surveillance schedule like as I don't see it in your signature. I am definitely proceeding with chemo, made an appointment to see my oncologist next week and to start as soon as ! No chances taken !

There are NO guarantees with cancer, with the surgery or even with chemo. We had another member on the board who was initially staged as a stage II and he may/may not have always had lung mets that perhaps were too small to detect for some time. He had the LAR surgery, did chemo, exercised, ate well.....and still the cancer returned. There is NEVER any guarantee that you won't have a recurrence even if you do all the radical surgery, chemo, etc. Even patients who have an APR can and do get a recurrence. Cancer is based on statistics and NOTHING is 100% guaranteed.


I agree - there's no sure thing as that's the feeling I got from my healthcare team too. Answers were all based on the data and scans results FOR NOW. My husband prefers to take on a pessimistic view towards this and reminded me that it can return and when it does, we both need to be mentally prepared to fight it all over again. It's all about managing expectations and giving it our best shot in the process !

IMO, why not do chemotherapy? In your case, you had at least one local node that was suspicious for cancer. If that were me, I'd be DEMANDING more chemo just to make sure that IF those cancer cells in that/those node(s) did by chance spread...you will be doing everything in your power to kill it off. Even though we like to believe that chemoradiation kills everything...malignant tumor cells and cancerous nodes, again, there's no guarantee that it does.


Yes - I did have one suspicious swollen node in the vicinity when diagnosed in the beginning. Thank you for the reminder.

Don't worry if your surgeon isn't pushing for the chemo particularly if he is doing a 'study' about the W & W. It just may be that he doesn't want one patient doing chemo and another not. Who knows but this is up to YOU.
Best of luck with whatever decision you come to.


Yup - we really do have to be our own advocate a lot of the times during the process. I admire how some of you were fighting your doctors against their suggestions, had it been for me I don't think I have the strength ! But thank god for this board, I am a much more informed patient and I think I'm at least asking the right questions.
Dx @ 39 F, married, no kids, full-time work
Nov 18 - Colonoscopy + MRI + CT = Dx of a mid-rectal tumour at T3N1M0 (2cm) 7cm from AV
Dec 18 - CRT prescribed - 28 sessions of radiation + Capecitabine at 3000mg daily
End Dec 18 - Completed CRT with little side effects
Feb 19 - Second MRI showed a speck of residual tumour - continue to wait
Mar 19 - MRI, PET, sig flex and biopsy ordered to determine being a WW candidate.
Apr 19 - Complete clinical response. Going for 6 cycles of Xelox.

Jolene
Posts: 91
Joined: Wed Jan 23, 2019 10:17 am

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

Postby Jolene » Wed Apr 03, 2019 5:21 am

Hi Nifty - I guessed with only 6 suggested cycles of Xelox, he didn't deemed it as necessary to have the port ? I am a little concerned about leakage and veins infection which he said is rare ! I had little side effects from my previous xeloda intake and no other bodily concerns so I guessed it's a pretty straight forward case ?

My mum who had colon cancer a few years back had 8 cycles of Folfox which is suppose to be about 6 months ended up in a 9 months period due to side effects and low blood count. There were also some other blood drawn in between. All in all, she had the port in her for 2 years before it was removed.

I'm going to revive a Xelox thread to find out more about side effects and port situation !

My mum loves her port and was grateful for it as she had enough of painful needle pricks each time they attempt a test on her, that is why I'm nervous that I'm not actually going to have one ! :X In your case, having a port is probably a good thing !
Dx @ 39 F, married, no kids, full-time work
Nov 18 - Colonoscopy + MRI + CT = Dx of a mid-rectal tumour at T3N1M0 (2cm) 7cm from AV
Dec 18 - CRT prescribed - 28 sessions of radiation + Capecitabine at 3000mg daily
End Dec 18 - Completed CRT with little side effects
Feb 19 - Second MRI showed a speck of residual tumour - continue to wait
Mar 19 - MRI, PET, sig flex and biopsy ordered to determine being a WW candidate.
Apr 19 - Complete clinical response. Going for 6 cycles of Xelox.

Jolene
Posts: 91
Joined: Wed Jan 23, 2019 10:17 am

Re: W&W-ers - "awareness" of rectum?

Postby Jolene » Wed Apr 03, 2019 6:14 am

Hi Lakeswim !

My doc initially arrange only for a 4 months interval check (MRI + Flex sig) stating that's the standard protocol time. but I was sure I read something from one of Dr Angelita's paper that a regular 2 months check was required for WW, I am already mentally exhausted these days and didn't press on further. My husband however wasn't very convinced about a 4 months gap and kept questioning him about the long wait (but what do we know!) :|

The doctor kind of relented and we came to a compromise of seeing him in 2 months time for a tumour site check and if things doesn't feel good up the rectum, he can then accelerate the MRI + Flex sig tests. If all is good, we will see him again at the 4 months mark to then do the MRI + Flex sig. I felt a little more reassured at this arrangement.

He explained about the concept of a reasonable amount of time to see him again. In the event that the tumour decides to flare up, it will actually need time to do so and produce enough visible signs and signals for him and also for the machines to catch it. Hence it can be futile to do an MRI check every month ! According to his experience, he felt that a 4 months interval is a good time for him and the machines to catch any signs of recurrence.

So your 4 months interval isn't really too far off from my doctor's concept of WW. It looks like different doctors prefers a different mixture of diagnostic tools at different intervals. If your team is experienced enough with WW, I guess you don't have much to worry ? Perhaps it might be good to hear of what sort of wait period do other WW patients get - something I'm very interested in.

Any chance that you can be a little persistent in narrowing those waiting gaps with your team ?

I had no concept of TNT - I wished I did so I can then question the CRT that was provided to me at the beginning. When I was first diagnosed and started CRT I didn't even realised what it actually involves as everything moved so fast ! I'm fortunate enough to be admitted into a private facility and everything was moving at lighting speed - I already had a treatment plan sorted out by the 3rd day after my diagnosis and I was in CRT the following week. To put it simply, I didn't have enough time to research on my own after my diagnosis !

It was only halfway through CRT that I realised that I will need a temporary stoma after going through surgery. I discovered only much later what LARS means and how it could potentially affect me for the rest of my life ! My mother had colon cancer and there was no stoma or LARS involved and I just assumed it was going to be the same for me. Little did I know rectal cancer is a whole different game of it's own !!! My radiation doctor was later shocked to know that I am considering WW and said that if that was the case, he would have increased his radiation dosage - but I was like.... NOBODY TOLD ME ABOUT LARS AND STOMA BAGS ! If I had known, I would be adamant in increasing whatever needed to be increased and taken whatever needs to be taken right at the beginning. I guessed that's becasue WW is still barely accepted by every doctor, let alone TNT for me ?

Anyway, just grateful to be on WW and one can only hope it doesn't return and if it does I can only tell myself I gave it my best shot for what is being served.

Not to change course, but I am interested in the W&W-ers on here.
* Do certain (spicy?) foods affect how your rectum feels?
* Do you have more "awareness" of your rectum since radiation?


My rectum seems to rumble a lot more than before after CRT ! Is that your experience too ? I get the feeling that I'm often reminded that there's food and waste "down there" ! Lol. I'm don't know if the rumbling activity is caused by spicy food or not but subconsciously I have started to avoid or take less heavy greasy flavours and food including spicy stuff.

I think I could relate to your rectum feeling a little different. Just a few weeks ago, I was still pooping mucus from the radiation. I was also taking a lot of probiotics which made me went to the loo more. I then found spots of fresh blood on the toilet roll from the surface of my anus where there was like a tiny bump - I suspected either hemorrhoids or effects from the radiation. A somewhat slight stinging feel when I pass motion. A week or two later, it went away. I didn't think it was an issue as all my scans came back okay so I put it down to the radiation effects.
Dx @ 39 F, married, no kids, full-time work
Nov 18 - Colonoscopy + MRI + CT = Dx of a mid-rectal tumour at T3N1M0 (2cm) 7cm from AV
Dec 18 - CRT prescribed - 28 sessions of radiation + Capecitabine at 3000mg daily
End Dec 18 - Completed CRT with little side effects
Feb 19 - Second MRI showed a speck of residual tumour - continue to wait
Mar 19 - MRI, PET, sig flex and biopsy ordered to determine being a WW candidate.
Apr 19 - Complete clinical response. Going for 6 cycles of Xelox.

weisssoccermom
Posts: 5931
Joined: Thu May 10, 2007 2:32 pm
Location: Pacific NW

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

Postby weisssoccermom » Wed Apr 03, 2019 9:33 am

Jolene,
Just a quick reply as I am getting ready to go to work. My treatment was over 12 years ago so I will remember as best as I can.

1. A CEA every 3 months for the first 2 years....then I believe it went to every 6 months for years 3+. Since year 7 or so, I've been having it drawn yearly at my physical (my GP is my doc now) and for the past 2 years....we just stopped. It was never a good indicator for me anyway.....0.5 at diagnosis.

2. Every 3 months, I would have a rectal ultrasound....alternating with every 3 months I would have a mini flex sig to look at the rectum. In other words, Jan & July....mini flex sig & April and October.....rectal ultrasound. That continued as well for the first 2 years. Then it got spread out a little.....maybe every 4 months....eventually we dropped the ultrasound (thank goodness!). Even up until 5 years ago, I was getting the mini flex sig every 2.5 years.

3. Colonoscopy 1 year after surgery. Due to a benign polyp being found on that scope, my next scope was in 2 years I think....maybe 3. As long as I am clean....no benign or precancerous polyps.....I'm on a 5 year schedule. Again, in between those, my surgeon had recommended a mini flex sig every 2.5 years.

4. CT scans every 3 months for the first 2 years....then every 6 months. She wanted to stretch it to 9 months at I think year 4. I can't remember though. Stopped scans after year 5.....insurance wouldn't pay because it wasn't on the medically advised plan (that oncs recommend).

Hope this helps.
Dx 6/22/2006 IIA rectal cancer
6 wks rad/Xeloda -finished 9/06
1st attempt transanal excision 11/06
11/17/06 XELOX 1 cycle
5 months Xeloda only Dec '06 - April '07
10+ blood clots, 1 DVT 1/07
transanal excision 4/20/07 path-NO CANCER CELLS!
NED now and forever!
Perform random acts of kindness

Jolene
Posts: 91
Joined: Wed Jan 23, 2019 10:17 am

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

Postby Jolene » Wed Apr 03, 2019 9:59 am

Phillypatient wrote:Congrats Jolene!! You really did just win the lottery!! That said, you should absolutely do the chemo part to address any potential micrometastases. The xeloda dose is slightly higher than the one you took during radiation, so if you tolerated that okay, then that should not be such an issue. It's the Oxalipltin that seems to cause the majority of the issues in the chemo regimen. That said, you can dial back on the OXY if it starts causing intolerable side effects. My understanding is that the Xeloda does the real "heavy-lifting" in the regimen. You should definitely check with your oncologist about this.

Again, hearty congrats!!


Hi Phillypatient - Thank you ! I liken being on the WW as a ticket to the lottery ! Winning it would be crossing the 5 year NED mark !!! :D For now, I am just hoping to receive a consolation prize of crossing the 2 year mark so that chances of recurrence would be lowered !

I didn't have too much reaction from an earlier dosage of Xeloda although towards the end of the month I started to experience some itch and tingly on my finger tips which felt irritating. With Xelox, I'm guessing I will be experiencing a lot more as it's gonna be spanned across 4 months instead of just 1 month ! Anyway, it's an insignificant whine coming from me in the grand scheme of being on the WW and saving my rectum !

Thank you for sharing. Will check in with my onc about xeloda doing the heavy-lifting !
Dx @ 39 F, married, no kids, full-time work
Nov 18 - Colonoscopy + MRI + CT = Dx of a mid-rectal tumour at T3N1M0 (2cm) 7cm from AV
Dec 18 - CRT prescribed - 28 sessions of radiation + Capecitabine at 3000mg daily
End Dec 18 - Completed CRT with little side effects
Feb 19 - Second MRI showed a speck of residual tumour - continue to wait
Mar 19 - MRI, PET, sig flex and biopsy ordered to determine being a WW candidate.
Apr 19 - Complete clinical response. Going for 6 cycles of Xelox.

User avatar
O Stoma Mia
Posts: 1600
Joined: Sat Jun 22, 2013 6:29 am

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

Postby O Stoma Mia » Wed Apr 03, 2019 2:07 pm

Jolene wrote:... I didn't have too much reaction from an earlier dosage of Xeloda although towards the end of the month I started to experience some itch and tingly on my finger tips which felt irritating. With Xelox, I'm guessing I will be experiencing a lot more as it's gonna be spanned across 4 months instead of just 1 month ! ...

If you want to prepare yourself for the 4-month Xeloda experience, you can familiarize yourself, in advance, with some of the issues that may come up. It is far better to prepare yourself in advance rather than wait until problems occur.

Here is a link with some suggestions:

Tips on minimizing XELOX (CAPEOX) side effects
https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=59287&p=469490#p469490

nifty624
Posts: 14
Joined: Sun Mar 03, 2019 12:34 pm

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

Postby nifty624 » Wed Apr 03, 2019 2:33 pm

O Stoma Mia,

Helpful links (earlier and today), thank you!
F57yo DX T2 carcinoma 11/6/18
CT scan 11/09/18 MRI 11/15/18 T3N1M0
nCRT Xeloda/Radiation X28 12/10/18 - 01/22/19
Hospitalized 01/02/19 w/acute ileitis (radiation enteritis)
01/02/19 CT scan: tumor "significantly reduced"
6 week MRI 03/06/19 nearly or complete CR
Flex SIg scope/biopsy 03/08/19 ; no evidence of malignancy

Local Excision TAMIS procedure scheduled for 04/05/19 with adjuvant chemo (FOLFOX) to begin @ end of April.

Rikimaroo
Posts: 184
Joined: Tue Dec 20, 2016 8:48 pm

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

Postby Rikimaroo » Wed Apr 03, 2019 3:15 pm

[quote="lakeswim"]Rikimaroo...
I am so sorry to hear you had the local recurrence. I imagine that must have been devastating for you, but you sound like you have a positive attitude.

I am missing where you are in the process? Did you have your surgery? And I’m curious why you want a permanent ileostomy (have to read up on this option).

Also, I’m curious how long you went after chemo/rad before the recurrence was discovered? How long did you W&W? And, did you feel any difference in that area (any pain or discomfort?)? I know you said you went for a scheduled flex Sig and they found it....



Hi LakeSwim,

I had surgery april 3 2018, LAR/Liver resection. They removed my entire rectum. I did FOLFOX after the surgery for 3 months, 6 treatments. I did Chemo/Rad back in February of 2017 and everything look clear, flex sig, I didn't do anymore MRIs at the time. Obviously the cancer wasn't gone and about October 2017 it showed back up, but I had signs of blood in my stool again, so I knew it was back and confirmed on my next Flex Sig.

It was my fault for not following up with my Oncologist as we spoke today regarding that, and he said he mentioned to me to follow-up with him after surgery, which I didn't do, but I should of followed up with him either way after Chemo/rad was done. I could of pressed for FOLFOX like PRS and others did -I really made some crucial mistakes here, and now I have to dig hard and deep to get out of this hole I made for myself. Only reason I mentioned permanent ileostomy is because the unpredictability of pooping now and multiple trips, the bag was easy and I could do anything. It will probably get even better then it is now, I am maybe a little impatient but it could be the way it is going forward. It's hard to make a commitment without the worries I might be stuck in a bathroom somewhere for 40 minutes. I have no pain.
RC T3N1M0
MSS - NRAS Mutation
Chemo Rad, CCR - W&W 5/2017
Recurrence 11/2017
CT Scan 11/2017 Liver Met 5.5cm Stable, Stage IV
Port Scheduled for 12/2017, folfox - avastin 12/2017
Blood Clot in Neck 1/2018, stop avastin, continue FolFox
LAR/Liver Resect 4/2018
Chemo Finish 8/2018
Reversal 10/18
CEA - 12/16 26.1, 1/17 32.2, 3/17 6.6, 11/17 500.5, 12/17 638.5, 1/3/18 424.8, 1/16/18 163.5, 1/31/18 62.2, 2/18 21.1, 3/18 14, 4/18 .8, 10/18 1.2, 12/18 3.2, 2/8 11.4, 3/6 22

Jolene
Posts: 91
Joined: Wed Jan 23, 2019 10:17 am

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

Postby Jolene » Wed Apr 03, 2019 7:51 pm

ticktock10 wrote:Congrats Jolene. As per the others, I would recommend the mop up chemo. It’s not much fun but it’s a small price to pay for peace of mind - not that you really have peace of mind when you’re on W&W, but it’s important to feel that you have given yourself the best chance of success.


Thanks ticktock ! My onc has warned that not everyone has the stomach for WW ! How was your journey before the 5 year NED lottery mark ? I'm curious about your surveillance schedule, would you mind sharing ? Also - during the 5 years was there anything that you had done differently in terms of lifestyle ?

I'm trying to eat healthier since the diagnosis - trying to include as much fiber as I could everyday, reduce on processed food, took more pro-biotics, got into a disciplined routine with a personal trainer, slept earlier and learning to just chill and be zen these days ! Trying to be in as much nature as possible for the negative ions !
Dx @ 39 F, married, no kids, full-time work
Nov 18 - Colonoscopy + MRI + CT = Dx of a mid-rectal tumour at T3N1M0 (2cm) 7cm from AV
Dec 18 - CRT prescribed - 28 sessions of radiation + Capecitabine at 3000mg daily
End Dec 18 - Completed CRT with little side effects
Feb 19 - Second MRI showed a speck of residual tumour - continue to wait
Mar 19 - MRI, PET, sig flex and biopsy ordered to determine being a WW candidate.
Apr 19 - Complete clinical response. Going for 6 cycles of Xelox.

Jolene
Posts: 91
Joined: Wed Jan 23, 2019 10:17 am

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

Postby Jolene » Wed Apr 03, 2019 8:09 pm

O Stoma Mia wrote:
Jolene wrote:... I didn't have too much reaction from an earlier dosage of Xeloda although towards the end of the month I started to experience some itch and tingly on my finger tips which felt irritating. With Xelox, I'm guessing I will be experiencing a lot more as it's gonna be spanned across 4 months instead of just 1 month ! ...

If you want to prepare yourself for the 4-month Xeloda experience, you can familiarize yourself, in advance, with some of the issues that may come up. It is far better to prepare yourself in advance rather than wait until problems occur.

Here is a link with some suggestions:

Tips on minimizing XELOX (CAPEOX) side effects
https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=59287&p=469490#p469490


OMG - thanks Stoma Mia !! This link is god sent !!!!! What would I do without this board !!
Dx @ 39 F, married, no kids, full-time work
Nov 18 - Colonoscopy + MRI + CT = Dx of a mid-rectal tumour at T3N1M0 (2cm) 7cm from AV
Dec 18 - CRT prescribed - 28 sessions of radiation + Capecitabine at 3000mg daily
End Dec 18 - Completed CRT with little side effects
Feb 19 - Second MRI showed a speck of residual tumour - continue to wait
Mar 19 - MRI, PET, sig flex and biopsy ordered to determine being a WW candidate.
Apr 19 - Complete clinical response. Going for 6 cycles of Xelox.


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