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

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Jolene
Posts: 146
Joined: Wed Jan 23, 2019 10:17 am

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

Postby Jolene » Sun Jan 05, 2020 9:08 pm

Great news annie ! Thanks for sharing with us WW !!! Always hopeful to hear another all clear from a fellow ww !
Dx @ 39 F, married
Nov 18 - 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
Jan 20 - Test/scans all clear/ Continue to wait and watch

Annie50
Posts: 93
Joined: Mon Jul 16, 2018 3:44 pm

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

Postby Annie50 » Mon Jan 06, 2020 2:08 pm

Yes ! How are you ? Xxx

Supportivechild
Posts: 24
Joined: Thu Dec 26, 2019 12:45 am

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

Postby Supportivechild » Tue Jan 07, 2020 9:39 am

Hello Peter,

Thank you for sharing your story. I see in your signature that you were originally stage as stage III T3N1 with two suspicious lymph nodes. After your treatment did they update your staging? At the moment I'm trying to wrap my mind around "suspicious nodes". I'm obviously new here as a care giver to my mother. She has a 5cm rectal tumor age 56. Diagnosed on 12-13-19. So far she's T1N1 with 2 suspicious nodes measuring 7x4 mm and 5x3 mm
Her ct abdomen pelvis with contrast and MPR results says that her liver, spleen, pancreas etc appears normal. The lung bases are unremarkable. Were waiting on the CT of her chest which will be done in a few days.

Thank you for your time
Jay
Caregiver of mother 56
12-13-19 DX Rectal Cancer
5 CM Mass
T1N1M0
2 suspicious lymph nodes 7x4mm 5x3 mm
Abdomen/Pelvis CT
MRI Rectal Screening
Chest CT
PET SCAN

prs
Posts: 169
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 Jan 08, 2020 12:42 am

Hi Jay,

My staging was by the Dr that performed a rectal ultrasound. I'm not sure how he determined the lymph nodes were suspicious. This Dr did note the size of my tumor but did not write anything about the size of the nodes. I did ask my radiation oncologist about this and she said the main thing was the cancer hadn't yet spread to any other organs. If there were any stray cancer cells in my lymph system then the purpose of the chemo part of the treatment was to kill them before they spread. She also mentioned that Drs are usually very conservative when they do the staging to ensure you get the treatment for the worst case scenario.

I was told that during the radiation treatment they radiated the area around my tumor to include the lymph nodes. Apparently without the suspicious lymph nodes they would have focused the radiation entirely on the tumor in order to reduce the extent of the tissue damage. I believe my surgeon checked the lymph nodes at the same time she found the tumor was gone and declared the CCR. There was no mention of staging after that, presumably because there was no evidence of disease.

Good luck with your mother, the time immediately after diagnosis is always nerve racking. You've made a great start by finding this site. Lots of information here to help you speed up the learning curve, and enable you to ask her Doctors the right questions about her treatment.
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

skb
Posts: 49
Joined: Tue Mar 28, 2017 2:00 pm

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

Postby skb » Fri Jan 10, 2020 2:45 pm

Jolene wrote:
prs wrote:Just wanted to report I had another six monthly follow up last week. The results of both the MRI and the flex sig were fine. That's now 4 1/2 years NED since the end of my radiation treatment. Apparently I get one more six monthly follow up and then go annually after that.

My Doctor told me at their facility they have had about a dozen patients each year who qualified for, and elected to go on Watch and Wait, so we are not alone!

Hope all my fellow W&Wers on this board are doing well and living life!


Hi PRS - Thanks for sharing your wonderful news with us ! Do you still get the nerves just before each scan after so many years ?

Grateful for your contribution on this wait and watch thread ! Good luck and all the best to hitting the 5 year mark which sounds like it's just around the corner !



I am a wait and watch adopter who avoided colon/rectal surgery three years ago when there was a complete response to the neoadjuvant therapy. I was initially diagnosed as T3N0M0. Although there was no surgery, there was a 6-cycle Xelox adjuvant chemo as well.

Unfortunately, a metastatic nodule was detected in my lung CT last year and it was removed with a VATS surgery. There was no chemo afterward. The frequency of my CT scans have gone up though.The nodule was detected two years after initial diagnosis. It was not detected in It was growing slowly and tested positive in biopsy.

I wanted to update this thread and let everyone know that not all wait and watchers are enjoying a cancer-free life. Hoping for the best.
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/day
6/28/17: biopsy shows no invasive adenocarcinoma
8/09/17: MRI - no primary tumor left, starts wait and watch
8/17/17 to 12/1/17: mop-up chemo with Folfox and oxaliplatin (IV infusion), every two weeks
5/19 expanding right lung nodule, 8mm
8/19 VATS wedge resection
9/19 Clean PET, NED
12/19 Clean CT, NED

Supportivechild
Posts: 24
Joined: Thu Dec 26, 2019 12:45 am

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

Postby Supportivechild » Fri Jan 10, 2020 7:23 pm

skb wrote:
Jolene wrote:
prs wrote:Just wanted to report I had another six monthly follow up last week. The results of both the MRI and the flex sig were fine. That's now 4 1/2 years NED since the end of my radiation treatment. Apparently I get one more six monthly follow up and then go annually after that.

My Doctor told me at their facility they have had about a dozen patients each year who qualified for, and elected to go on Watch and Wait, so we are not alone!

Hope all my fellow W&Wers on this board are doing well and living life!


Hi PRS - Thanks for sharing your wonderful news with us ! Do you still get the nerves just before each scan after so many years ?

Grateful for your contribution on this wait and watch thread ! Good luck and all the best to hitting the 5 year mark which sounds like it's just around the corner !



I am a wait and watch adopter who avoided colon/rectal surgery three years ago when there was a complete response to the neoadjuvant therapy. I was initially diagnosed as T3N0M0. Although there was no surgery, there was a 6-cycle Xelox adjuvant chemo as well.

Unfortunately, a metastatic nodule was detected in my lung CT last year and it was removed with a VATS surgery. There was no chemo afterward. The frequency of my CT scans have gone up though.The nodule was detected two years after initial diagnosis. It was not detected in It was growing slowly and tested positive in biopsy.

I wanted to update this thread and let everyone know that not all wait and watchers are enjoying a cancer-free life. Hoping for the best.



Thank you for your update. I mentioned watch and wait yesterday during my mothers doctors appointment and was advised that it's not something they do.
Even if they did I believe the watch and wait method would drive my mother crazy. She wants her mass cut out now! But she's in the early stages, hasn't started chemo/radiation yet.
I would love to know what made everyone decide to watch and wait?

Jay
Caregiver of mother 56
12-13-19 DX Rectal Cancer
5 CM Mass
T1N1M0
2 suspicious lymph nodes 7x4mm 5x3 mm
Abdomen/Pelvis CT
MRI Rectal Screening
Chest CT
PET SCAN

Jolene
Posts: 146
Joined: Wed Jan 23, 2019 10:17 am

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

Postby Jolene » Fri Jan 10, 2020 11:18 pm

skb wrote:
I am a wait and watch adopter who avoided colon/rectal surgery three years ago when there was a complete response to the neoadjuvant therapy. I was initially diagnosed as T3N0M0. Although there was no surgery, there was a 6-cycle Xelox adjuvant chemo as well.

Unfortunately, a metastatic nodule was detected in my lung CT last year and it was removed with a VATS surgery. There was no chemo afterward. The frequency of my CT scans have gone up though.The nodule was detected two years after initial diagnosis. It was not detected in It was growing slowly and tested positive in biopsy.

I wanted to update this thread and let everyone know that not all wait and watchers are enjoying a cancer-free life. Hoping for the best.


Hi SKB - So sorry to hear about the metastatic nodule ! :( And thanks for sharing your story which is a good reminder for all of us not to take WW for granted. Your WW treatment approach sounds really similar to mine and I will as will all of us I'm sure, to keep up with all the checks and scans. I do have a tiny suspicious nodule on my CT scan which apparently is too tiny to warrant biopsy and further follow-up. Docs said it could also be lung scars from coughs. I had done two CT in the last one year since my diagnosis to follow up and due to the radiation required for the scans, the healthcare team advised I shouldn't be doing too many of it.

Can I ask out how frequent will your future CT scans be and seeing as it's metastatic and not local recurrence - are you monitoring only the lungs and are there any talks for surgery of the rectum ?
Dx @ 39 F, married
Nov 18 - 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
Jan 20 - Test/scans all clear/ Continue to wait and watch

Jolene
Posts: 146
Joined: Wed Jan 23, 2019 10:17 am

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

Postby Jolene » Fri Jan 10, 2020 11:46 pm

Supportivechild wrote:Thank you for your update. I mentioned watch and wait yesterday during my mothers doctors appointment and was advised that it's not something they do.
Even if they did I believe the watch and wait method would drive my mother crazy. She wants her mass cut out now! But she's in the early stages, hasn't started chemo/radiation yet.
I would love to know what made everyone decide to watch and wait?

Jay


The wait and watch method is mainly for the purpose of organ preservation and is very specific to preserving the rectum in rectal cancer. The rectum is located at the bottom end of the colon and removing it or doing a surgery on it can often result in many side effects thereafter which affects the quality of life. One of the main side effect is the lost of the sphincter muscles or weak sphincter muscles resulting in a colostomy bag (in some cases for life depending on how low the tumour is). It can also affect other parts of the organ very close to the rectum such as the bladder.

After the reattachment of the colon/rectum , most patients will suffer from something called Low anterior resection syndrome (LARs) which can disrupt everyday life. There's even a thread on this if you look through it. I have been to a support group and spoke to a few patients who underwent the surgery - most of them took 2 years for life to return to normality and one of them also mentioned he was running to the toilet up to 30-40 times a day after the reattachment as the colon/rectum as it took him a long time to adjust to the reattachment. In some occasions, it can be so bad that patients are considering to return to having a colostomy bag for life which gave them much more predictability than having to go through LARs. But there are also patients who are adjusting well with all the side effects. The age of the patients has no bearing as to how much LARs they can be suffering from. It is entirely unpredictable and varies from person to person and one won't know until they have undergo the surgery.

I decided to chance it when I was qualified as a WW candidate. The thought of having a bag or adjusting to LARs is simply too much for me to bear. However, WW requires intense and diligent surveillance (every 3/4 months for the first 2 years) so as to detect any kind of recurrence or metastatic and you need to be mentally prepared for salvage surgery at any point in time. Some people can't bear the nerves and would prefer a peace of mine knowing that the damn cancer spot is removed. I still get cranky every 3 months just before a big scan and scope.

My healthcare team is following the research of Memorial Sloan Kettering Cancer center very closely. They emphasized multiple times that WW is still not main stream yet and not every doctor is keen to be on board with it but it has been a hotly debated topic in the last decade or so with the aim of improving the quality of patients' life. Check out some of these links.

https://www.mskcc.org/blog/how-watch-an ... ality-life

https://jamanetwork.com/journals/jamaon ... le/2720474
Dx @ 39 F, married
Nov 18 - 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
Jan 20 - Test/scans all clear/ Continue to wait and watch

skb
Posts: 49
Joined: Tue Mar 28, 2017 2:00 pm

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

Postby skb » Sat Jan 11, 2020 12:10 am

Jolene wrote:
skb wrote:
I am a wait and watch adopter who avoided colon/rectal surgery three years ago when there was a complete response to the neoadjuvant therapy. I was initially diagnosed as T3N0M0. Although there was no surgery, there was a 6-cycle Xelox adjuvant chemo as well.

Unfortunately, a metastatic nodule was detected in my lung CT last year and it was removed with a VATS surgery. There was no chemo afterward. The frequency of my CT scans have gone up though.The nodule was detected two years after initial diagnosis. It was not detected in It was growing slowly and tested positive in biopsy.

I wanted to update this thread and let everyone know that not all wait and watchers are enjoying a cancer-free life. Hoping for the best.


Hi SKB - So sorry to hear about the metastatic nodule ! :( And thanks for sharing your story which is a good reminder for all of us not to take WW for granted. Your WW treatment approach sounds really similar to mine and I will as will all of us I'm sure, to keep up with all the checks and scans. I do have a tiny suspicious nodule on my CT scan which apparently is too tiny to warrant biopsy and further follow-up. Docs said it could also be lung scars from coughs. I had done two CT in the last one year since my diagnosis to follow up and due to the radiation required for the scans, the healthcare team advised I shouldn't be doing too many of it.

Can I ask out how frequent will your future CT scans be and seeing as it's metastatic and not local recurrence - are you monitoring only the lungs and are there any talks for surgery of the rectum ?


Jolene,
My CT scans are 3 months apart now. Each scan is scheduled only at the readout of the prior scan.

After the VATS surgery to remove the metastatic lung nodule, the two scans that I have had were "eye to thigh"- including chest, abdomen and pelvis.

I have been also having sigmoidoscopy of the rectum every three months for the last three years. This is to monitor local recurrence. Since that area has been cancer free ever since the neoadjuvant therapy was completed in 2017, there has been no talk of rectal surgery.

There is another person in this forum in Norway who had one metastatic lung nodule removed with VATS after the completion of Wait and Watch for organ preservation. Her id is Beccashocked.

One cant say for sure whether the metastasis could have been prevented by performing rectal surgery instead of wait and watch in the first place. It is possible the spread to lungs was seeded before the time we were faced with the decision to choose between wait-and-watch and radical surgery.

If you need to talk or need any additional information, please feel free to message me.

Thanks,
skb
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/day
6/28/17: biopsy shows no invasive adenocarcinoma
8/09/17: MRI - no primary tumor left, starts wait and watch
8/17/17 to 12/1/17: mop-up chemo with Folfox and oxaliplatin (IV infusion), every two weeks
5/19 expanding right lung nodule, 8mm
8/19 VATS wedge resection
9/19 Clean PET, NED
12/19 Clean CT, NED

Jolene
Posts: 146
Joined: Wed Jan 23, 2019 10:17 am

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

Postby Jolene » Mon Jan 13, 2020 11:01 am

skb wrote:
Jolene,
My CT scans are 3 months apart now. Each scan is scheduled only at the readout of the prior scan.

After the VATS surgery to remove the metastatic lung nodule, the two scans that I have had were "eye to thigh"- including chest, abdomen and pelvis. I have been also having sigmoidoscopy of the rectum every three months for the last three years. This is to monitor local recurrence. Since that area has been cancer free ever since the neoadjuvant therapy was completed in 2017, there has been no talk of rectal surgery.

There is another person in this forum in Norway who had one metastatic lung nodule removed with VATS after the completion of Wait and Watch for organ preservation. Her id is Beccashocked.

One cant say for sure whether the metastasis could have been prevented by performing rectal surgery instead of wait and watch in the first place. It is possible the spread to lungs was seeded before the time we were faced with the decision to choose between wait-and-watch and radical surgery.

If you need to talk or need any additional information, please feel free to message me.

Thanks,
skb


Hi again SKB - thanks for sharing your journey. I'm glad to hear that there has been no local recurrence so far. I hope you continue to preserve your rectum and that your lung nodules all rid of ! How are you recovering from the VATS ? I don't see any signature of yours and wondering if you needed any chemo after the VATS surgery ?

One of the thing that my healthcare team emphasized as part of patient engagement is that there is simply no way of ever knowing whether the mets are due to a non-surgery nature (for WW) or seeded way before any kind of detection.

I will check out Beccashocked's post for more reading up ! Thanks for the heads up !
Dx @ 39 F, married
Nov 18 - 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
Jan 20 - Test/scans all clear/ Continue to wait and watch

skb
Posts: 49
Joined: Tue Mar 28, 2017 2:00 pm

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

Postby skb » Mon Jan 13, 2020 6:27 pm

Hi,
After the VATS to remove the lung nodule, I was faced with the decision to go for chemo or not.

The oncologist at Mayo wanted it, the oncologist at U of M said there is no strong case for chemo but it could go either way. In Norway (Beccashocked), the protocol is to not have more chemo.

I decided to not have more chemo. Dont know if it is right or not. There is no consensus among experts on it.The latest NCCI guidelines on this from 2018 say that more experts prefer no chemo.

Jolene,
You should not worry about potential mets at this stage.Only 8% of wait and watchers got a met (per a study I read). Just that Becca and I fell in that category.

I wish you stay in the other 92%.

Glad you decided to preserve your rectum. Good decision.

All the best
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/day
6/28/17: biopsy shows no invasive adenocarcinoma
8/09/17: MRI - no primary tumor left, starts wait and watch
8/17/17 to 12/1/17: mop-up chemo with Folfox and oxaliplatin (IV infusion), every two weeks
5/19 expanding right lung nodule, 8mm
8/19 VATS wedge resection
9/19 Clean PET, NED
12/19 Clean CT, NED

Jolene
Posts: 146
Joined: Wed Jan 23, 2019 10:17 am

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

Postby Jolene » Mon Jan 20, 2020 11:20 am

Hello WW-ers,

I got an all clear today with my scans and have officially passed the 1 year mark since radiation. :D

Last week I did a full colonoscopy, biopsy, MRI and ultrasound for results triangulation and it all came out negative. Doc was very pleased with what he saw.

My surveillance routine moving forward is now stretched to 4 months apart instead of 3 months.

Next up is the MRI/PET scan in May. Doc mentioned now that we are in the second year of WW, we have to be very careful of distance diseases (mets!).

Fingers crossed ! Desperately hoping to get to the 2 years mark when chances of recurrence drops drastically !!!
Dx @ 39 F, married
Nov 18 - 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
Jan 20 - Test/scans all clear/ Continue to wait and watch

skb
Posts: 49
Joined: Tue Mar 28, 2017 2:00 pm

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

Postby skb » Tue Jan 21, 2020 6:52 pm

Great news. Congratulations!
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/day
6/28/17: biopsy shows no invasive adenocarcinoma
8/09/17: MRI - no primary tumor left, starts wait and watch
8/17/17 to 12/1/17: mop-up chemo with Folfox and oxaliplatin (IV infusion), every two weeks
5/19 expanding right lung nodule, 8mm
8/19 VATS wedge resection
9/19 Clean PET, NED
12/19 Clean CT, NED

rdujay
Posts: 1
Joined: Fri Jan 31, 2020 1:01 pm

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

Postby rdujay » Fri Jan 31, 2020 1:27 pm

After receiving so much helpful information from this forum, this is my first post. I haven’t posted until now because I didn’t think that I could offer any new information or insights, but having just achieved a clinical complete response (“CCR”) to stage 3 rectal cancer, I wanted to share my journey in case someone else is in a similar situation.
Symptoms and Diagnosis: I had been having some blood in my stool for a while—like a long time…years. I didn’t think it could be cancer because literally no one in my family has ever had any type of cancer. Then a year before my colonoscopy, each time I would use the toilet it looked like a Game of Thrones episode had taken place (lots of blood) so I finally went in to get scoped. They discovered a 3cm mass approximately 10cm up from the anal verge (“AV”).
Treatment Plan: I live near Durham NC, so I made an appointment with Duke Cancer center, which is a nationally rated (#32?) cancer center. The first appointment was typical where I met with a surgical oncologist, a medical oncologist and a radiation oncologist all in one day. Their plan was to do Total Neoadjuvant Treatment, which just means six rounds of Chemo (Xeloda and Oxaliplatin), followed by chemoradiation, rest period of 6 weeks, followed by surgery. I want to stress that this was their plan—not mine. Thanks to this forum, I was very interested in W&W, yet when I brought this up with the surgeon, he was very dismissive. It was at that moment when I knew that I had to be ultimately responsible for my own outcome, and that if I needed surgery, this guy would not be doing it.

Chemo: six rounds of Xeloda (2,000 2x per day) and six infusions Oxaliplatin. As everyone has noted, the infusions sucked. They made me extremely nauseous and tired for 3-4 days after each one, and I couldn’t work for those days. For each subsequent infusion, my doctor cut my dose back to avoid neuropathy. It's been said on this forum before, but Oxaliplatin is the most toxic and least effective of the two chemo drugs, so don’t feel bad cutting the dosage. During the first few days of being on the Xeloda, I started to get heart attack symptoms. Great. To make a long story short, a small percentage of people can have a cardiac reaction (spasms around the heart) to Xeloda that mimic heart attack symptoms, which can be solved with blood pressure medication. The result of this was that my first two round of Xeloda were either cut short or reduced in strength, and for rounds 3-6 the dosage was reduced from 2,000 twice a day to 1,500 twice a day.

2nd Opinion: I had been doing a lot of research on W&W, and wanted to meet with a doctor who understood W&W to discuss. I wasn’t sure whether I would have a complete response, but I wanted to talk to someone before I started radiation. I went up to Memorial Sloan Kettering (“MSK”) in New York and met with one of the surgeons there. While I was there, he gave a me sigmoidoscopy, and I was shocked—after chemo alone the tumor was tough to find. It was now just a small red bump. Looks like chemo had worked. Before my appointment, I thought that if I was lucky enough to have a CCR, I would be the perfect candidate for W&W. To my surprise, the MSK doctor said that W&W “wasn’t designed for me.” He said that it was designed for people who are older, or with a lower tumor where a permanent bag could be a possibility. His recommendation was to skip radiation and head to surgery. I didn’t like that option, so I asked whether he would be comfortable putting me on W&W if I had a CCR after radiation. He said that he understood my concerns, and although it wouldn’t be his first choice, he would be comfortable with W&W. I was to come back after chemoradiation to learn my fate.

Chemoradiation: Prior to starting, I read a study showing that CCR rates were increased as the radiation dosage was increased. The “standard” dosage for long course (28 sessions?) radiation is 50 grays. CCR rates started to increase sharply at 54 grays, so I spoke with my radiation oncologist about increasing the dosage to 54 grays. In addition, I wanted to get Intensity-modulated radiation therapy (“IMRT”) as opposed to the standard type of radiation. The only difference with IMRT is that patients tend to have fewer side effects as it spares more healthy tissue. CCR rates are slightly lower with IMRT, but I still requested it. Doctor said ok to both—54 grays of IMRT. So I did my 28 or so sessions---not a single side effect. Not one. I was ready for all sorts of fun, but got nothing. While on radiation, I was back on my full dose of Xeloda of 1,500mg 2x per day. During the last week of radiation, my bloodwork had come back and CEA had dropped from a high of 3.8 to 0.5—a good sign.

Waiting period: I had been very clear with my doctors at Duke from day 1 that my goal was a CCR because I wanted to avoid surgery. So it wasn’t much of a surprise to them when I said that I would be heading up to MSK for my surgical consultation. This would be a pass/fail test where I either would have a CCR and W&W, or I would not have a CCR and thus get surgery. One change I made to my treatment that I think is REALLY important is the waiting period between the end radiation and meeting with a surgeon. Radiation takes time to work and 6-8 weeks isn’t a lot of time. Every study I could find shows that the longer people wait after radiation (up to 14 weeks) the better chance of a CCR. I waited 12 weeks between my radiation ending and going back up to MSK to get scoped, but I would have been happy with 10.

Judgment Day: As you can probably imagine, I was anxious as hell on the day of my MSK appointment. Would I have a CCR? I kept telling myself that the odds were not in my favor, so I was ready for surgery. But after the scope, the doctor said that he didn’t see anything that he was worried about on the scope, or MRI. My CEA had increased to 0.7, but still really low. He said that I’m good for now and that I would be coming back in 4 months.

That is my journey thus far. To me, the most important changes I made were to the radiation—getting IMRT, 54 grays, and the waiting period afterward. My biggest recommendations would be to increase the waiting period after radiation to at least 10 weeks and also get the total neoadjuvant treatment (chemo up front). Finally, I want to mention two other things, which I did, but I don’t think made any difference, yet I am going to mention them. First, throughout this entire journey, I took resveratrol, a supplement. 1 gram of pure powder mixed in with full-fat Greek yogurt. Since radiation, I have also started taking 1 gram daily of the prescription medication metformin. This medicine is meant to treat diabetes (I am not diabetic), but has amazing longevity and anti-cancer properties. To be clear, not "anti-cancer" like chemo…more like a heck of a lot of broccoli.

So I’m not sure if I will be on W&W forever (re-growths happen in about 20%-30% of cases), but for now, I am happy. I hope this helps someone else that wants to avoid surgery.

-Jay
40yrs at dx
April 2019: DX 3cm rectal adenocarcinoma 10cm from AV. CEA 3.8
Stage III T3 N1 M0 with two suspicious lymph nodes
May-Sept: 6 Rounds Xelox (1,500mg 2x per day)
Oct-November: IMRT radiation with 1,500 mg Xeloda 2x per day. CEA 0.5
End of Jan. 2020: Clinical Complete Response. CEA 0.7
MRI and rectal exam every four months

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CRguy
Posts: 10177
Joined: Sun Feb 10, 2008 6:00 pm

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

Postby CRguy » Fri Jan 31, 2020 5:31 pm

Just a bit more info on this topic recently posted into our ***News Stories Thread*** ONGOING 2020

Watch and Wait to Treat Rectal Cancer in Older Patients
Caregiver x 4
Stage IV A rectal cancer/lung met
13 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far


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