Page 24 of 40

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

Posted: Sat Apr 06, 2019 5:02 pm
by mozart13
8 cycles of folfox make significant difference :

"For overall survival (OS) of colorectal cancer patients (Fig. 1), the trend is apparent. A significant difference was noted when comparing groups of patients that received at least 8 cycles and those that received less than 8 cycles. When differentiating between groups using conditions of more than 8 cycles, the p value decreased dramatically and fluctuated around 0.05, with use of 9 cycles resulting in p = 0.07 and use of 12 cycles resulting in p = 0.06. Multivariate survival analysis of patients stratified according to 8 cycles of treatment (Table 3), also including pT, ECOG, lymph node number, and perforation/obstruction, revealed treatment cycle number as the only independent prognostic factor (p = 0.04)."

https://www.ncbi.nlm.nih.gov/pmc/articl ... po=27.5000

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

Posted: Sat Apr 06, 2019 10:09 pm
by prs
Back in 2015 the standard chemo protocol was twelve 2-week cycles of Folfox, or eight 3-week cycles of Xelox. I chose the Xelox, but after six cycles my blood counts fell so low the 7th cycle kept getting delayed. After three weeks delay my oncologist cancelled the last two Oxaliplatin infusions and I finished those cycles with Xeloda only.

I would also point out that my Xeloda dose was initially set twice as high as the dose during radiation. However nausea and diarrhea set in big time towards the end of the second cycle and, after I detailed my symptoms, my Dr immediately reduced my Xeloda dose. I was able to at least tolerate the treatment after that.

I guess what I'm trying to say is that my advice is to go into chemo hoping it's not going to be that bad, but if it becomes intolerable...and by this I mean you are thinking death might be preferable...and believe me I was there...then don't just quit! Go in and talk to your Dr and get the dose reduced.

When my Dr cancelled the last two Oxi infusions, I questioned if that was going to increase my chance of a recurrence. He responded he thought 80% of the effectiveness of the treatment was from the Xeloda. I don't know if he said that to make me feel better, but I remember thinking that, if true, he should have reduced my effing Oxi dose too!!!

mozart13's data seems to indicate that if you can gut out the treatment for at least four months, you are well on the way to winning the battle.

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

Posted: Sun Apr 07, 2019 11:17 am
by Jolene
prs wrote:Back in 2015 the standard chemo protocol was twelve 2-week cycles of Folfox, or eight 3-week cycles of Xelox. I chose the Xelox, but after six cycles my blood counts fell so low the 7th cycle kept getting delayed. After three weeks delay my oncologist cancelled the last two Oxaliplatin infusions and I finished those cycles with Xeloda only.

I would also point out that my Xeloda dose was initially set twice as high as the dose during radiation. However nausea and diarrhea set in big time towards the end of the second cycle and, after I detailed my symptoms, my Dr immediately reduced my Xeloda dose. I was able to at least tolerate the treatment after that.

I guess what I'm trying to say is that my advice is to go into chemo hoping it's not going to be that bad, but if it becomes intolerable...and by this I mean you are thinking death might be preferable...and believe me I was there...then don't just quit! Go in and talk to your Dr and get the dose reduced.

When my Dr cancelled the last two Oxi infusions, I questioned if that was going to increase my chance of a recurrence. He responded he thought 80% of the effectiveness of the treatment was from the Xeloda. I don't know if he said that to make me feel better, but I remember thinking that, if true, he should have reduced my effing Oxi dose too!!!

mozart13's data seems to indicate that if you can gut out the treatment for at least four months, you are well on the way to winning the battle.


Hi PRS - Thanks for sharing your experience with Xelox. I'm seeing the oncologist this Tuesday and I believed I might be starting as soon as Weds the following day. I'm getting quite nervous of the effects but I believed it's nothing in comparison to loosing the rectum !! Its still not getting to me that my life and moods and energy might temporarily be changed over the next few months but I know it will.

Notes taken on not giving up and asking for dosage reduction !!!

How will the first cycle be like ? Did you feel any effects immediately ? Any tips ? :X

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

Posted: Sun Apr 07, 2019 11:46 am
by prs
Jolene, the first cycle wasn't too bad at all, I was pleasantly surprised. I think chemo might be like radiation, in that the effects become cumulative.

On the oxi infusions, they were infused thru a vein on the inside of an elbow, and the nurse would find the best looking vein to stick each time I went in. For later cycles I found it worked best to switch arms half way through the infusion, and also slow down the infusion rate. Towards the end it was taking six hours to do the infusion.

One time my regular nurse was busy with another patient, and I had a different nurse try to find a suitable vein for the infusion. She couldn't find one in an elbow and instead found one on the back of my hand. That was a big mistake, as the pain from the chemicals was much worse. I think it's best if the infusion is put into as large a vein as possible, that way there is more blood flow to dilute the chemicals.

Good luck next week. Yes, the chemo will likely be rough, but you would still have to do it even if you had surgery!

Looking back, I'm so glad I toughed it out. My body is pretty much back to what it was before they found the tumor.

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

Posted: Wed Apr 10, 2019 9:14 am
by Jolene
Just went for my first Xelox cycle today and apart from an aching left arm which can't seem to grip onto anything without causing pain, I am feeling better than I thought. As long as no strength is being exerted, on the infusion arm all is well at least for today

PRS - I can finally relate to your experiences and have some questions ! You raised some interesting suggestions.

prs wrote:......

On the oxi infusions, they were infused thru a vein on the inside of an elbow, and the nurse would find the best looking vein to stick each time I went in. For later cycles I found it worked best to switch arms half way through the infusion, and also slow down the infusion rate. Towards the end it was taking six hours to do the infusion.


They started me off with the back of my hand and seems to work okay for me. Why do you think switching arm might be a good idea mid-way ? I am right-handed and didn't think it would be ideal to have an achy prickly main arm that does most of the everyday mundane stuff !

Also - I'm wondering how long does this achy arm feeling last ?

I won't be bombarding this thread with Xelox effects and have posted the details in another thread if anyone is interested in responding or reading !

viewtopic.php?f=1&t=59315&start=30

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

Posted: Wed Apr 10, 2019 10:11 am
by nifty624
Hi All,

I had the TAMIS procedure last Friday and all went well, I have had very little pain and very little bleeding. My main challenge is getting the ileitis back under control after two days without meds. I've had to go back to the tincture of opium for a couple of days to stop the turbulence and get back on track. This has complicated my recovery slightly in that I am unable to digest any food and am apparently not absorbing any nutrients or calories again (like in January after the injury first developed) so I am anxious to get it under control so I can fuel my body and recovery.

But overall, I feel really good. If I wasn't weak with lack of food energy, I think I'd feel up to longer walks with my dog and almost all of my normal activities.

I've got a follow up with the surgeon on the 23rd and a follow up with the oncologist next week on the 17th.

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

Posted: Wed Apr 10, 2019 11:13 am
by O Stoma Mia
Jolene wrote:...
I won't be bombarding this thread with Xelox effects and have posted the details in another thread if anyone is interested in responding or reading !
https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=59315&p=490994#p490994

Jolene - Thank you for posting your Xelox effects on the other thread! For your information, the direct link to your post on the other thread is:
https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=59315&p=490994#p490994

(Sorry to bother you with this technicality, but the link that you posted previously is a relative link with an offset of 30, and it will work for you and some other people but not for everyone. In my opinion,it's better to use a direct Post Bookmark that will work for more people.)
Reference: https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=38032&p=487386#p487386

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

Posted: Wed Apr 10, 2019 9:21 pm
by Jolene
Thanks for update nifty ! As you know I'm very curious in following up your case as my surgeon was not confident of a local excision as suggested by Weiss! Good to know that you are feeling fine and all ! Will you be starting chemo after oncologist meet up ?

nifty624 wrote:Hi All,

I had the TAMIS procedure last Friday and all went well, I have had very little pain and very little bleeding. My main challenge is getting the ileitis back under control after two days without meds. I've had to go back to the tincture of opium for a couple of days to stop the turbulence and get back on track. This has complicated my recovery slightly in that I am unable to digest any food and am apparently not absorbing any nutrients or calories again (like in January after the injury first developed) so I am anxious to get it under control so I can fuel my body and recovery.

But overall, I feel really good. If I wasn't weak with lack of food energy, I think I'd feel up to longer walks with my dog and almost all of my normal activities.

I've got a follow up with the surgeon on the 23rd and a follow up with the oncologist next week on the 17th.

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

Posted: Wed Apr 10, 2019 9:22 pm
by Jolene
Thank you Stoma Mia - got it about the direct link !! :)

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

Posted: Mon Apr 15, 2019 8:26 am
by O Stoma Mia
Jolene wrote:Just went for my first Xelox cycle today and apart from an aching left arm which can't seem to grip onto anything without causing pain, I am feeling better than I thought...

Jolene -
I was wondering what kind of follow-up/surveillance protocol you are under while you are on Xelox. I'm not familiar with W&W procedures. This is alI could find when I did a search:

Habr-Gama et al. [10] in their last published series, established an intense follow-up protocol, including
  1. a monthly clinical visit with
  2. digital rectal examination (DRE),
  3. rectoscopy (EUS),
  4. CEA levels and
  5. CT during the first three months,
with subsequent spacing of controls until one year of treatment with radio-chemotherapy
(at which time a cCR is considered into account)


Do you know what they will be doing for surveillance, and how often? Will it be the same surveillance protocol after you have finished Xelox?

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

Posted: Mon Apr 15, 2019 8:58 am
by Jolene
Hi Stoma Mia !

My surveillance is as follow for the next 2 years - no matter how Xelox interferes.

A rectal site check every 2 months (to see if any tests need to be speed up if necessary)
A MRI and sigmoid scope every 4 months

PET scans, CT scans, biopsy will be ordered as and when any of the above looks suspicious

Oncologist is monitoring my CEA level throughout the next 4 months while on Xelox but I never thought about how we might take it further when my chemo is done ! I will check with him ! Thanks for the reminder ! My CEA level has never been a good gauge to begin with. Even when I was first diagnosed, my CEA level was looking really well and normal.

I'm aware that Habr-Gama recommends a monthly rectal examination and much closer tests gaps but my doctor is of the opinion that 4 months is an appropriate time apart in his experience. He thinks that anything shorter than 4 months would be too microscopic for any machines or human to detect any reoccurrence. After some deliberating and challenging questions from us, he then decided to drop in a rectal site check at the 2 months mark otherwise he was happy to see me only once every 4 months. I am not sure if the rectal check would be a full on digital examination or not but it seems like he was always confident via a non-digital rectal check.



O Stoma Mia wrote:
Jolene wrote:Just went for my first Xelox cycle today and apart from an aching left arm which can't seem to grip onto anything without causing pain, I am feeling better than I thought...

Jolene -
I was wondering what kind of follow-up/surveillance protocol you are under while you are on Xelox. I'm not familiar with W&W procedures. This is alI could find when I did a search:

Habr-Gama et al. [10] in their last published series, established an intense follow-up protocol, including
  1. a monthly clinical visit with
  2. digital rectal examination (DRE),
  3. rectoscopy (EUS),
  4. CEA levels and
  5. CT during the first three months,
with subsequent spacing of controls until one year of treatment with radio-chemotherapy
(at which time a cCR is considered into account)

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

Posted: Sun Apr 21, 2019 7:12 am
by Annie50
Rikimaroo wrote:
lakeswim wrote: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.


Hi Rikamaroo
Did you feel any symptoms before recurrence ? So was it about 6 months after you had stopped chemo rad or more ? Thanks for help xxx Annie ccx

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

Posted: Sun Apr 21, 2019 9:49 am
by Jolene
Hi all WW-ers,

I'm curious how does your insurance pans out for WW ? My insurance is happy to pay for all post-hospitalization follow-up tests (MRI, CT, blood works etc..) for now.

According to the policy, as long as there is a hospitalization logged in, all post hospitalization follow-ups will be paid for. Thank goodness a flex sig or colonoscopy is actually considered a half day hospitalization where I am from. I'm not in the US or Europe so my policies might sound and work differently from most of you. I'm just curious how insurance in other countries works out for a WW situation.

I cannot help but get worried how the insurance company might react or start being "funny" when they start to receive bills for flex sig and MRI test every 4 months over the next 5 years.

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

Posted: Sun Apr 21, 2019 10:22 am
by weisssoccermom
Mine had no issue...I believe because the standard of care protocol calls for testing every 3 - 6 months even following traditional methods. The only time my insurance pitched a fit was at after my 5 year mark. They didn't want to pay for the CT scan. Instead they told me that I could have a chest x-ray and IF it showed something, then they would pay for a CT scan. Other than that, no issues here. That being said, insurance companies don't consider the follow up testing to be 'routine'. They paid for it but I had to pay our deductible first and then I had a 10% copay amount. We had double coverage so for me, I had nothing.

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

Posted: Sun Apr 21, 2019 11:59 am
by nifty624
Hi Everyone,
I'm glad to hear things went Ok for your first XELOX treatment. How is your arm now?
I chad follow up with the oncologist and am now scheduled to start FOLFOX on May 1. I am having the port installed on April 29.
I see the surgeon for follow up on Tuesday and in the interim, he communicated to me the pathology following my LE surgery April 5. The "nearly completely gone" tumor was indeed nearly completely gone. Only a 4mm fragment remained and it was clearly differentiated and completely excised in the surgery, with nice wide clear disease free margins. I essentially have NED right now, although my surgeon doesn't say that, preferring to err on the conservative side until I show up for the follow up port and chemo! HAHA
The oncologist said it all looks VERY GOOD and the surgeon's partner also said this is very good news.
I will need the port, I am guessing, because of my problem with veins blowing out, low blood pressure and the acute ileitis aggravating it all. Since I may need infusions of fluids as well over the course of this treatment as I did in January/February- and it was such a battle to find good veins, I think this is why the port is something they are insisting I truly need.
Apparently, I will receive the FOLFOX in a long slow infusion at the cancer center on the 1st day and then go home with a pump which will continue the infusion of the xeloda type element over the next 36-48 hours. I have to return on the 3rd day for them to remove the pump and bag. Then, I understand it is two weeks of not taking anything until the next 2 day infusion cycle. I am scheduled to undergo 8 cycles, which will take me into early August.
Happy Day, everyone and Happy holy days to all who celebrate,