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

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susie0915
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Re: Rectal Cancer: Habr-Gama Watch and Wait Strategy to Avoid Surgery

Postby susie0915 » Sat Feb 01, 2020 11:22 am

rdujay wrote: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


This is such great news. Just be sure to keep up with all your follow ups. I was never offered Watch and Wait or new it was an option. After my chemo/radiation my surgeon did a sigmoidoscopy and all that was seen was scar tissue. I also had a pet scan that showed no evidence of disease especially in the distal rectal area. The only thing my surgeon told me was that I may not need chemo after surgery. I was excited for this. The pathology after my surgery showed clean margins, 0/24 lymph nodes but minimal residual cancer cells. Because of this it was recommended I do clean up chemo. I often wonder what would've happened if I did W&W because I know I would've done it if offered. Praying you stay cancer free forever.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoidoscopy/only scar tissue left
8/15 PET scan NED
9/15 LAR
0/24 nodes
10/15 blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 C 4mm lung nod
10/17 pel/abd CT NED
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, CT pel/abd/lung NED
11/18 CEA .6
5/19 CT NED, CEA <.5
10/19 Clear colonscopy
11/19 CEA <.5

Jogey
Posts: 8
Joined: Sun Dec 09, 2018 5:24 am

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

Postby Jogey » Wed Mar 18, 2020 4:34 pm

Hi Everyone,

I would like to introduce myself and describe my medical journey so far. I am a 61 year old male. In November 2018 I was picked up by the UK National Colorectal Cancer Screening programs after experiencing no symptoms of any kind. I had rectal cancer stage 3 T3a, N1, M0 . I had chemoradiotherapy and was really lucky to have a complete clinical response including in the lymph nodes. Neoadjuvant Chemoradiotherapy finished at the end of January 2019 and I was given the option of either watch and wait or surgery and I opted for watch and wait.
I elected to have 3 months adjuvant chemotherapy of Oxaliplatin from July to September. I am now coming up to 14 months clear on watch and wait but have had a few scares including suspicious nodules on the liver, which turned out to be benign and a recent scare with 2 lesions on the spine/pelvis which just turned out to be fibrous tissue and not malignant. So far watch and wait has worked for me but there is no doubt that it is quite a challenging road psychologically as you never quite know if you are going to be told the cancer has recurred locally or there is distant spread. My least favourite are colonoscopies and sigmoidoscopies as they tell you the results immediately and you can pick up that something is wrong whilst you are lying there on the table.
All in all though I feel lucky to have had the opportunity to avoid a major operation with possibly severe side effects and so far I have been lucky with watch and wait and I hope this luck holds for me and that you all have success with your treatment too.

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 » Thu Mar 19, 2020 9:44 pm

Congratulations Jogey, and welcome to the W&W crew!

I agree there is some tension on every follow up visit, but it does get easier as time passes. I understand the chances of a recurrence decrease considerably at the two year mark, so you might find yourself more relaxed as you approach that milestone.

I will say it does look like your team is doing a really thorough job of the follow up protocol. IMO it's better to have false alarms than have them miss something. Seems like you are in very good hands.
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

Jogey
Posts: 8
Joined: Sun Dec 09, 2018 5:24 am

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

Postby Jogey » Sat Mar 21, 2020 7:33 pm

Thank you Peter and absolutely I am hoping to get to that 2 year mark where the chances of local recurrence fall considerably.

Take Care,

Jogey

lakeswim
Posts: 226
Joined: Sat Mar 31, 2018 9:37 am

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

Postby lakeswim » Sat Mar 28, 2020 12:31 pm

Hello, everyone! I hope all my W&W-ers are staying healthy all around. I haven't been on the board for a while and I need to scroll and update myself after I write this.

Every time I get a good scan, I say I should check in here, but then I tell myself I'll wait until the next one (to be sure! don't want to jinx anything!) Lots of anxiety, for sure.

I completed radiation in late Nov 18 so feel like I have been "done" with treatment since then but my Onc says they are counting the time since Jan 2019 when they ran the MR - so in their eyes, it's been only 14 months. I get a CT locally approx every 8 months and go to NYC for my 4 month flexsig (every other time in NYC, they do a rectal MR). I was last in NYC in January for a flex sig and things looked good then but haven't had an MR or CT since September.

Anyway, I have my CT next Tuesday locally. I haven't left the house in 2 weeks (except 2 trips to the store) due to the virus. My counts are still considered low and they tell me it's my body still (!) bouncing back from the chemo. (I question this because my counts were normal in Jan 19 after treatment ended but went back down shortly thereafter and have stayed down since then. But I am not getting sick often, so they say my immune system is functioning well but still considered compromised. Does anyone else have low counts a year later?) Anyway, so I am having DOUBLE anxiety about this CT because of both the possibility of learning the cancer has returned AND contracting the virus while I'm getting the CT. (My onc team feels getting the scan done is worth the risk of seeing a few people). Contrast is involved so I need to drink from a cup several times while there and I get an IV, so lots of exposure, closeness. So, scanxiety with an added dimension.

My next trip to NYC (flex sig, MR) is scheduled for mid May but I assume that won't happen now.(Who could have foreseen THIS SCENARIO in the list of "reasons not to travel to do W&W"?) I speak to my Onc (here locally) this coming week and will strategize with him what my options will be. The good news is that my surgeon in NYC is very positive. He said I should feel less anxiety as more time passes b/c there's less chance it will return. He said cheerfully, after my last check, "See you in 6 months!" and I said "WOAAAAAH, no, thank you! I'm staying with 4 months." and he laughed. So, he clearly was okay with stretching out the time a bit, but it's only been a YEAR and I am not okay with stretching it out. We all know this is a risky strategy and they just don't know that much about it yet. So, I'd like to stay on the most aggressive schedule for as long as they will allow it (and as long as I can travel to do it, barring things like this virus). Unfort., I may have to stretch it out now. Or, I may need to get the flex sig and MR done locally with a team (surgeon and radiologist and tumor board) who didn't want me to pursue W&W in the first place, which is not ideal IMO. (They are a quality team, but still.)

Meanwhile, I have a friend who was JUST diagnosed with breast cancer THIS WEEK and her genetics shows she has the bad gene/ kind (I'm not too read up on BC, unfort.). She has to make all her treatment and surgical decisions quickly and under the umbrella of this virus and I just FEEL for all the folks here in this same situation. And for those folks with really low counts who still have to get to their chemo treatments and must go out. And I feel for the folks whose colonoscopies are delayed so their diagnosis may be delayed. It's just an additional nightmare on top of the cancer nightmare.

I am doing well generally but always a bit anxious about it returning. I question my choice sometimes and I do find I delay my life a bit waiting for the result of each check. I also need to post elswhere about a few things generally, like 1) my continued low blood counts (anyone else with low blood counts at this point after treatment?) and 2) the best bike seat for a radiated rectum (i can't ride a bike anymore bc that entire area feels strange for days after I ride) 3) my inability to read books anymore and continued brain fog - and a few other things I forget (ha). But I am still thanfful every day for being here and for this forum for their support and wisdom.

I will check in more often here because it's nice for the W&W-ers to provide support on top of updates. Thanks, all, for reading.
Female - RC dgns @ 49 y
Adenocarcinoma
10-11 cm from anal verge ("large")
Stage 3a - T4N0M0
FOLFOX May -Sept 18
Capecetabine + Radiation - 28 sessions - Oct - Nov 18
Jan 19 - MRI & flex sig show tumor gone, Chest/ab CT no change
Feb 19 - MRI & flex sig show tumor gone
W&W (must travel)
May 19 - flex Sig - looks good
Sept 19 - Chest/ab CT no change, MRI no change, flex Sig looks good
Jan 19 - flex sig - looks good
*grateful*

roadrunner
Posts: 24
Joined: Sun Jan 12, 2020 8:46 pm

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

Postby roadrunner » Sat Mar 28, 2020 1:38 pm

I’m just a W&W “wannabe” — getting an MRI in mid-April; recent rectal exam indicated no remaining tumor after chemorad — but I have done a TON of research on WBCs in light of the coronavirus in the last couple of weeks, so I thought I’d weigh in on those questions.

A bit more background: I finished chemorad (pelvic radiation 60 Gy, 33 Tx) for a low/mid rectal tumor 1/17. My WBCs are now right at the low end of normal, and seem to be recovering slowly. My medical oncologists told me that it may take months to recover from pelvic radiation’s effect on the bone marrow down there (big bones, lots of white blood cells produced). Based on this information and my research, I suspect your counts are related to pelvic radiation at this point, not chemo (I think the bounce back from chemo is usually much quicker). I did not find a lot of good stuff specifically on immunocompromise related to pelvic radiation for rectal cancer, but what I did find suggested the following:

Lymphocyte counts can take a very long time to recover after pelvic radiation, though grade 3/4 toxicities are uncommon (I’m not sure what you mean by “low,” but it sounds like yours are not lymphocytopenic). By very long I do mean years, not months. Some effects I believe go as far as 10 years out in some people. Three years to pre-therapy LC levels is one number I remember. There is a big, older study on bladder cancer with much information on LC counts after pelvic radiation which seems somewhat relevant. Though I don’t think it would be useful to try to summarize it here (and radiation amounts were pretty high, lacked IMRT, different cancer, location, etc.), I do recall that there was generally an uptick for six months, then sometimes dips thereafter. The overall impression I got was that PR had significant, longer-term effects on leukocytes, and that these effects could last for months or years, but that they were concentrated on lymphocytes and that counts rose slowly over time, albeit with occasional retreats such as what you’re describing. Again, however, toxicities were usually just grades 1 or 2.

I just asked my med oncs yesterday whether they thought my immune response would be robust if I got an infection now (last test was, e.g., ANC 1.95 k/mcl and ABS LC .73 k/mcl (versus low “normal” lab values of 2.0 and .6 respectively) — so my ANC is .05 below normal and ALC is normal), and they said I would, that I was “pretty much” normal. So if yours aren’t too low that is a good sign, and it sounds like the same message you got. Also, they will likely be on a slow upward slope (though maybe quite slow), and you are quite a ways out from PR, so hopefully past the worst of it.

Bottom line seems to be that PR effects on WBC count can be very long term, but generally improve slowly over time (with some variation in some people), and usually don’t create very low counts, so it’s not regarded as a huge issue for most survivors.
7/19: Rectal cancer: Initially staged as IIIA, T2N1M0
Initially approx 4.25 cm, low/mid rectum, mod. well diff. adenocarcinoma
8/22 -10/14 4 rounds FOLFOX neoadjuvant, 3 w/Oxiplatin (lots of side effects/reduced size est. 70-75%)
Switched to neoadjuvant chemorad in 11/19 (Xeloda and approx. IMRT, 60 Gy, 33 fractions)
Trying to achieve cCR.

lakeswim
Posts: 226
Joined: Sat Mar 31, 2018 9:37 am

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

Postby lakeswim » Sat Mar 28, 2020 3:48 pm

hello SKB - thank you for updating us. like you said, it's so important to see that not all W&Ws continue to see clear results so i appreciate you checking in and letting us know and i am truly so sorry to hear this. i will have to research what VATS is as i am not familiar. i think about the chance of mets often so i don't take a clear test for granted - ever. that said, when I considered watch & wait, one of the statistics that stuck with me was what you just mentioned -- the chance of mets - even with surgery - is not zero.

are the lungs where it tends to met first - if it does? i understood it to be the liver or the lungs.

my best to you (and beccashocked),
lake swim

skb wrote:
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
Female - RC dgns @ 49 y
Adenocarcinoma
10-11 cm from anal verge ("large")
Stage 3a - T4N0M0
FOLFOX May -Sept 18
Capecetabine + Radiation - 28 sessions - Oct - Nov 18
Jan 19 - MRI & flex sig show tumor gone, Chest/ab CT no change
Feb 19 - MRI & flex sig show tumor gone
W&W (must travel)
May 19 - flex Sig - looks good
Sept 19 - Chest/ab CT no change, MRI no change, flex Sig looks good
Jan 19 - flex sig - looks good
*grateful*

lakeswim
Posts: 226
Joined: Sat Mar 31, 2018 9:37 am

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

Postby lakeswim » Sat Mar 28, 2020 3:53 pm

roadrunner - thank you for all that information! i forgot how everyone on this forum is so darn smart. (i considered myself smart at one time but can no longer digest and understand this complex stuff - since chemo.) yes, my numbers have moved around a lot but have stayed just lower than "normal". my wbc are 2.3 now and my rbc is at the bottom end of normal. i agree, just based on a hunch, that it's from radiation. and it really amazes me how the rad onc folks continue to tell me that there are "no LT side effects to radiation". even my onc hematologist and i get a good laugh out of that when we get together.

good luck to you and i hope you get the option of W&W.

roadrunner wrote:I’m just a W&W “wannabe” — getting an MRI in mid-April; recent rectal exam indicated no remaining tumor after chemorad — but I have done a TON of research on WBCs in light of the coronavirus in the last couple of weeks, so I thought I’d weigh in on those questions.

A bit more background: I finished chemorad (pelvic radiation 60 Gy, 33 Tx) for a low/mid rectal tumor 1/17. My WBCs are now right at the low end of normal, and seem to be recovering slowly. My medical oncologists told me that it may take months to recover from pelvic radiation’s effect on the bone marrow down there (big bones, lots of white blood cells produced). Based on this information and my research, I suspect your counts are related to pelvic radiation at this point, not chemo (I think the bounce back from chemo is usually much quicker). I did not find a lot of good stuff specifically on immunocompromise related to pelvic radiation for rectal cancer, but what I did find suggested the following:

Lymphocyte counts can take a very long time to recover after pelvic radiation, though grade 3/4 toxicities are uncommon (I’m not sure what you mean by “low,” but it sounds like yours are not lymphocytopenic). By very long I do mean years, not months. Some effects I believe go as far as 10 years out in some people. Three years to pre-therapy LC levels is one number I remember. There is a big, older study on bladder cancer with much information on LC counts after pelvic radiation which seems somewhat relevant. Though I don’t think it would be useful to try to summarize it here (and radiation amounts were pretty high, lacked IMRT, different cancer, location, etc.), I do recall that there was generally an uptick for six months, then sometimes dips thereafter. The overall impression I got was that PR had significant, longer-term effects on leukocytes, and that these effects could last for months or years, but that they were concentrated on lymphocytes and that counts rose slowly over time, albeit with occasional retreats such as what you’re describing. Again, however, toxicities were usually just grades 1 or 2.

I just asked my med oncs yesterday whether they thought my immune response would be robust if I got an infection now (last test was, e.g., ANC 1.95 k/mcl and ABS LC .73 k/mcl (versus low “normal” lab values of 2.0 and .6 respectively) — so my ANC is .05 below normal and ALC is normal), and they said I would, that I was “pretty much” normal. So if yours aren’t too low that is a good sign, and it sounds like the same message you got. Also, they will likely be on a slow upward slope (though maybe quite slow), and you are quite a ways out from PR, so hopefully past the worst of it.

Bottom line seems to be that PR effects on WBC count can be very long term, but generally improve slowly over time (with some variation in some people), and usually don’t create very low counts, so it’s not regarded as a huge issue for most survivors.
Female - RC dgns @ 49 y
Adenocarcinoma
10-11 cm from anal verge ("large")
Stage 3a - T4N0M0
FOLFOX May -Sept 18
Capecetabine + Radiation - 28 sessions - Oct - Nov 18
Jan 19 - MRI & flex sig show tumor gone, Chest/ab CT no change
Feb 19 - MRI & flex sig show tumor gone
W&W (must travel)
May 19 - flex Sig - looks good
Sept 19 - Chest/ab CT no change, MRI no change, flex Sig looks good
Jan 19 - flex sig - looks good
*grateful*

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 » Sat Mar 28, 2020 5:06 pm

Hi lakeswim,glad to hear you are doing well. All my blood counts are at, or slightly below the low end of the normal range. They stabilized at those levels a little over a year after my radiation treatment, and have remained like that ever since (4 more years). I think that's just the way it is for all of us who got that dose of radiation.
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: 226
Joined: Sat Mar 31, 2018 9:37 am

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

Postby lakeswim » Sat Mar 28, 2020 6:30 pm

Hi PRS -
Thanks for your feedback!
- Lakeswim

prs wrote:Hi lakeswim,glad to hear you are doing well. All my blood counts are at, or slightly below the low end of the normal range. They stabilized at those levels a little over a year after my radiation treatment, and have remained like that ever since (4 more years). I think that's just the way it is for all of us who got that dose of radiation.
Female - RC dgns @ 49 y
Adenocarcinoma
10-11 cm from anal verge ("large")
Stage 3a - T4N0M0
FOLFOX May -Sept 18
Capecetabine + Radiation - 28 sessions - Oct - Nov 18
Jan 19 - MRI & flex sig show tumor gone, Chest/ab CT no change
Feb 19 - MRI & flex sig show tumor gone
W&W (must travel)
May 19 - flex Sig - looks good
Sept 19 - Chest/ab CT no change, MRI no change, flex Sig looks good
Jan 19 - flex sig - looks good
*grateful*

roadrunner
Posts: 24
Joined: Sun Jan 12, 2020 8:46 pm

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

Postby roadrunner » Sat Mar 28, 2020 9:38 pm

Lakeswim:

Thanks for the good vibes — I really, really want to do W&W, but we’ll see I guess. As far as “smart” goes, I don’t know — there’s just something about having cancer that focuses one’s thoughts! Until the chemo kicks in, anyhow — when I was on FOLFOX I forgot at least one impossible thing before breakfast every day, as the saying (sorta) goes. It’s a little better now, but I still tell my kids I have “post-chemo brain” every now and again when some thing I should know just sails out the window.

Good luck on your journey as well.
7/19: Rectal cancer: Initially staged as IIIA, T2N1M0
Initially approx 4.25 cm, low/mid rectum, mod. well diff. adenocarcinoma
8/22 -10/14 4 rounds FOLFOX neoadjuvant, 3 w/Oxiplatin (lots of side effects/reduced size est. 70-75%)
Switched to neoadjuvant chemorad in 11/19 (Xeloda and approx. IMRT, 60 Gy, 33 fractions)
Trying to achieve cCR.

linaSD
Posts: 13
Joined: Fri Feb 26, 2010 8:39 pm
Location: Idaho

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

Postby linaSD » Fri Apr 03, 2020 10:54 am

Thank you jaynee. I agree with you 100percent. I would never do the watch and wait.
Carolyn
Stage I T1-N0 M0. Rectal Cancer
Surgery 6/8/09
6wkx xeloda & 30 radiations
7/11 lung mets
avastin/renitinkin/xeloda 3yrs treatment
3/14 cyberknife left lobe
5/14 lobectomy right center lobe
VATS upper and lower right lobes
7/14 clear scan NED

lakeswim
Posts: 226
Joined: Sat Mar 31, 2018 9:37 am

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

Postby lakeswim » Fri Apr 03, 2020 11:31 am

Update: I had my CT here on Tuesday and it remains unchanged. So, good news!

My local Onc and I discussed strategy for if/when my flex sig/MR (currently scheduled for May in NYC @MSK) is postponed. He said we could do it here - even knowing it would be ideal to do it with same provider @MSK. Or, I could push the NY visit further, based on the feedback I got at my last visit with MSK surgeon. I am going to wait until May to worry about that.
Female - RC dgns @ 49 y
Adenocarcinoma
10-11 cm from anal verge ("large")
Stage 3a - T4N0M0
FOLFOX May -Sept 18
Capecetabine + Radiation - 28 sessions - Oct - Nov 18
Jan 19 - MRI & flex sig show tumor gone, Chest/ab CT no change
Feb 19 - MRI & flex sig show tumor gone
W&W (must travel)
May 19 - flex Sig - looks good
Sept 19 - Chest/ab CT no change, MRI no change, flex Sig looks good
Jan 19 - flex sig - looks good
*grateful*

lakeswim
Posts: 226
Joined: Sat Mar 31, 2018 9:37 am

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

Postby lakeswim » Fri Apr 03, 2020 11:59 am

HI RDUJay.
I am just catching up on posts in this thread and saw yours quoted later on and wanted to comment. First, let me say how much I admire your commitment to advocating for yourself. When I was first diagnosed, I saw my local team and then traveled for a second opinion at Cleveland Clinic. My local team was were very high on W&W from the beginning and really pushed the idea of everything up front. Total neoadjuvant therapy. (I've already forgotten the jargon having not been on here in a while and my damn chemobrain.) I went to Cleveland and they insisted on the standard treatment (radiation, surgery, then chemo) and scared me witless about W&W. (I did LOVE their female radiation oncologist though. She was very young - but outstanding! And the only female Rad Onc I've seen and the only Rad Onc who acknowledges female issues with radiation. If I could have done my treatment a la carte and I had lived closer - I would have done my radiation with her.)

Anyway, I went with TNT (my chemo was FOLFOX though) with my local provider and, from the beginning, said I'd never do W&W. But after spending time on this board (reading the stories post-surgery) and having a few "accidents" on walks during the last part of radiation, I reconsidered and hoped for a CCR to have the option. After treatment ended, my local surgeon said my tumor had disappeared but the local tumor board was worried about some "gray area" near my uterus. My surgeon suggested I go to MSK for another opinion. MSK told me they considered mine a complete response and they'd consider me a candidate for W&W. Their tumor board and radiologist (all of whom are totally CRC-focused vs my local board and radiologist - who deal with many cancers) did not have any reservations about my uterus.

THAT SAID, at every step of the way and at every place I visited (CC, here, MSK), I was reminded very firmly that W&W was intended (like your MSK doctor said) for those with low tumors and that it is NOT accepted protocol. And who would have ever thought that there'd be a situation like right now (COVID) where my tests would be cancelled or delayed? So, it's definitely not a decision to take lightly.

I also wanted to comment that my local team would not or could not (I don't recall) offer me IMRT. I believe my insurance (which is fabulous otherwise) would not cover it.

Anyway, congratulations on making a plan pragmatically and committing to it. I had a lot of anxiety when researching. So much to read and consider. I found it hard to keep my emotions out of it. I still do.

Good luck to you on your W&W and please remember to check in with updates! And I am curious who your surgeon is @MSK, so if you feel like sharing, please PM me!

lakeswim

rdujay wrote: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
Female - RC dgns @ 49 y
Adenocarcinoma
10-11 cm from anal verge ("large")
Stage 3a - T4N0M0
FOLFOX May -Sept 18
Capecetabine + Radiation - 28 sessions - Oct - Nov 18
Jan 19 - MRI & flex sig show tumor gone, Chest/ab CT no change
Feb 19 - MRI & flex sig show tumor gone
W&W (must travel)
May 19 - flex Sig - looks good
Sept 19 - Chest/ab CT no change, MRI no change, flex Sig looks good
Jan 19 - flex sig - looks good
*grateful*

roadrunner
Posts: 24
Joined: Sun Jan 12, 2020 8:46 pm

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

Postby roadrunner » Wed Apr 15, 2020 9:30 pm

Hey guys quick question: I just got MRI (a little over 12 weeks since CRT) results today that showed a “near cCR.” It sounded like the radiologist wasn’t exactly sure whether there was any remaining cancer or not. My surgeon, who is fantastic, wants to wait about 5 weeks then do a flex sig to decide on surgery or W&W through palpating/observation. Of course, I ran home (well, I was home since it was a video conference!) and started researching this situation. I found some interesting material suggesting that many (or most?) people in my situation will end up with a cCR if given enough time. One suggested 18-22 weeks from CRT is optimal to maximize the chance of cCR (I will be at 18 or so, so I’m wondering if I should push it back a bit?). The studies also back my surgeon up that MRI is not the best way to decide this, and that there are visual signs that are more conclusive. I’m very comfortable with and trust my surgeon, as I said, but want full information as I go forward. Does anyone have any experience or knowledge (or links) on near cCRs and W&W-friendly current approaches to same? Thanks for any info.
7/19: Rectal cancer: Initially staged as IIIA, T2N1M0
Initially approx 4.25 cm, low/mid rectum, mod. well diff. adenocarcinoma
8/22 -10/14 4 rounds FOLFOX neoadjuvant, 3 w/Oxiplatin (lots of side effects/reduced size est. 70-75%)
Switched to neoadjuvant chemorad in 11/19 (Xeloda and approx. IMRT, 60 Gy, 33 fractions)
Trying to achieve cCR.


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