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Saying Hello..... along with a stoma reversal question. -update-

nuc
Posts: 22
Joined: Jun 2019

Well.....I can only say, this is the hardest thing I have ever gone through.  I feel like I am in a nightmare, that I can't wake up from.

 

My incredible, beautiful 42 yo wife, was diagnosed with colorectal cancer in March.  Not a single risk factor, exercised 2 hours per day, didn't drink, didn't smoke, etc...  Had some blood in her stool, we're thinking hemorrhoids.  Proctological exam shows a nearly obstructing, bleeding tumor at the sigmoid/rectal juncture.  Referred for colonoscopy, and while I watched, the gastroenterologist couldn't get the scope past the tumor.  Took a biopsy and scheduled for surgery.  Had an MRI and CT, and other then the tumor, lungs and liver were clear.  3 weeks after her initial exam, she had the tumor removed along with 12 of 15, positive lymph nodes.  She also received a iliostomy bag, that the surgeon said would not be permanent, as the tumor was high enough, so the rectum could be saved.  Stage 3c. 

4 weeks after surgery, which included a hospitalization for hydrating IV due to a viscera infection from the surgery, she began 28 sessions of radiation whith concurrent daily Capecitabine (Xeloda).  I researched what could help with the radiations internal and external burning along with decreased leukocyte numbers, which are all side effects of localized radiotherapy.  Famotidine given at 4hrs and then again at 3hrs, this time with vit. c, prior to radiotherapy, allowed her to have better blood results after treatment then before, and the burning was primarily limited to what felt like a sun burn at the coccyx and just a feeling of tightness on the inside.

Being as active as she is/was, the stoma bag has been quite a burden for her, though we are thankful at least, it will not be permanent.  Currently she is between radiation treatment and beginning her next chemo.  We spoke with the surgeon and as 3 months has passed, he is willing to do the reversal on the 10th, less then 2 weeks from now.  He said that usually the reversal is not done until chemo is finished but we are worried, as research has shown, that the longer you wait to reverse, the more likely you are to have longterm problems getting back to normal bowel functions.  Studies show that 3 months is optimal for reversal, in order to have the least amount of lasting effects.  As of now the chemo was scheduled to start on the 18th of July.  Speaking to the oncologist about the reversal, they said that even though it is a relatively minor surgery, they will not begin chemo until a month has passed after the surgery.  So, if the reversal is done on the 10th, chemo would be started on the 7th of July, 20 days later then originally scheduled.  The oncologist strongly feels that this delay would make a difference, and to not do the reversal.  We are trying to balance quality of life along with cancer care.  I haven't found any research that says a 20 day delay in chemo, one way or the other, makes any "measurable" difference in OS or DFS.  However, we feel gulty if we disagree with them.  Like we don't want what's best for ourselves.  However, I have found research that states reversal surgery during or after chemo, makes no difference in final outcomes.  But because we are wanting something that is not normal protocol, they have difficulty with it.  I want her to have as normal a life as possible, while going through this process.

So, my question is, has anyone reversed a stoma after radiation, but before chemo?  And if so, how long did the oncologist wait to begin the chemo. 

Also, we are planning on doing Capmono instead of Capox, because it just doesn't seem that the possible longterm, severe neurotoxic effects of the Oxaliplatin, warrant the additional 5-7% increase in OS and DFS.  Quality of life is as important, if not more so, then quantity.

 

Thanks for reading, and I'm really so sorry that we all need to be here and going through this.  I feel so frustrated and I'm not a crier, but I feel like crying all the time.

Adam

 

Annabelle41415's picture
Annabelle41415
Posts: 6123
Joined: Feb 2009

Mine was done 8 months after surgery and after all treatment was completed.  Your wife's situation is different than mine though because my rectum was taken out and J-pouch was made so totally different.  My treatment was every 2 weeks and sometimes I'd have to wait 3 or 4 weeks for my counts to get up so I'm not sure if what your wife is on would be affected.  It's something that you should take into consideration though.  I've not heard of any certain number of days that a reversal can be done in order for it to be more effective.  There are many others on here than have a more similar situation to your wife's than me so I'm sure they will chime in soon to give you some great advice.  Wishing your wife the best.

Kim

airborne72's picture
airborne72
Posts: 274
Joined: Sep 2012

Adam:

My situation was not exactly the same as your wife's nor was the sequencing of events.  But I did have an ileostomy and went thru the reversal process.  Let me explain.

With similar symptoms and discovery, my rectal cancer tumor was identified in mid May 2017.  I underwent  5 1/2 weeks of neoadjuvant chemo (Xeloda pills) and radiation treatment from early July to mid August.  My resection surgery was conducted in mid October and I had an unexpected, but temporary ileostomy due to the condition of my intestines.

I so detested the ileostomy.  My oncologist would not begin adjuvant chemo (FOLFOX6) treatment until he was confident that I had recovered from the surgery and was responding well with the ileostomy.  That frustrated me even further.  I began my follow-up chemo in mid November and completed three sessions before I said no more.  I was losing weight and felt as if my quality of life was being compromised by the chemo.  I had a stage 2 tumor, so my decision to stop further chemo was less of a risk.

My next and most important objective was to get rid of the ileostomy but my oncologist was hesitant to release me back to the surgeon until my strength returned (sort of) and my blood chemistry rebounded.  Anyway, my reversal surgery was conducted in late March 2018.  I have since been trying to figure out my "new normal" bowels and how to best manage their influence on my life.

I remember how much the chemo affected the output of my ileostomy.  I can't imagine what it would do to a recently resected bowel, plus the overall physical "smack down" that chemo does to the body as a whole.

As Kim stated above, I have never heard anyone identify a specific length of time when an ostomy becomes detrimental to the effects of reversal.  I would think that it depends upon how much colon is removed, the effects of radiation on the colon, one's propensity to develop adhesions, the age of the patient, and the previous state of health of the patient.  Incidentally, I am 68 years young.

Once again, I detested my ileostomy.  But in hindsight, I can now appreciate the advice provided by my oncologist and surgeon.

Colorectal cancer sucks.  However, you guys have several things going for you - youth, healthy lifestyle and a very strong relationship.  Good luck.

Jim

nuc
Posts: 22
Joined: Jun 2019

Thank you Kim and Jim for your detailed answers.  I appreciate you taking the time.

When I mentioned a study showing that 3 months is an optimal time to reverse a stoma, I meant, a reversal sooner then later, is associated with a better functional outcome.  Of course, if you are having issues, with blood work, side effects, etc... a reversal would be contraindicated.   https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4349917/

And this is an interesting study, discussing safety of a reversal, even during adjuvant chemo.  https://www.ncbi.nlm.nih.gov/pubmed/25448655

 

So succinctly, Oncologist scheduled chemo to begin 35 days, after initial 6 weeks of rad/chemo was completed. 

Does putting next chemo out, an additional 15-20 days, so that a reversal can be done, really affect beyond a negligible amount, OS and/or DFS?  There are no studies on this, and my gut says the Onc. has a problem with this primarily, because it is out of the "normal" cookie cutter protocol, that everyone gets.

I know facts are short on this subject, so opinions are ok also :)

Thanks

Adam

Annabelle41415's picture
Annabelle41415
Posts: 6123
Joined: Feb 2009

I'm not sure if both of your doctors are in the same network, but all of my doctors worked together and communicated with one another if there was a problem.  They also made suggestions that normally one doctor wouldn't pursue but the other thought was a better outcome for me.  It might behove you to see if both doctors can communicate with one another to discuss the best for your wife.  You don't want to have her rush into a reversal when it might not be necessary.  My ileostomy output during treatment was extreme and it was better for me to have it while on treatment because it was awful.  Getting used to a reversal is going to be extremely hard for some, like me, going up to 35 times a day, but mine was different so don't base your wife's on my situation.  Remember, my rectum was removed too so things just went through me after my reversal.  Just think about the doctors talking about it before going forward.

Kim

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

For whatever it's worth, an oncology nurse once told me that colon cancer seems to be the most common in people who are health conscious and take care of themselves.

Anyway, it's harder to heal while doing chemo but I think if I were her I'd get that over with first and then worry about the ostomy reversal. Do what's more pressing first. The surgery can wait a bit. I was told that they can reverse it at any time and it doesn't make a difference but I never researched it because I chose to keep mine. I've had it for over 5 years now.

When I was getting the surgery for it a nurse drew a spot on my tummy where it should go because I ride my horse and I did't want it interfering. I'm told there's a bull rider that has one and still competes. I chose to keep mine because I'd always had IBS and my surgeon said it would likely be worse after the reversal. Life is so much easier with the bag and I can't imagine the IBS being worse, it had already impacted my life in many negative ways. 

 

I wish her luck in whatever you two decide.

Jan

nuc
Posts: 22
Joined: Jun 2019

Thanks Kim and Jan for your feedback. 

I'm sharing all these posts with my wife, so it's good for her to hear of other's experiences.  We haven't made a decision yet, she's got bloodwork tomorrow and a CT in a couple days, so we'll see where she is then. 

Adam

nuc
Posts: 22
Joined: Jun 2019

A bit of an update on where we are. 

CT was negative this past week and no change in cancer markers.  She is one of the 30% who has normal cancer marker levels, even with cancer.

Met with Onc. for the second time this past Friday.  My wife told her, with everything being equal and just putting off chemo for 3 weeks, if she only has few years to live, she doesn't want the next 8 months, spent with the stoma.  If she has a choice.

We also discussed doing CapMono instead of CAPOX.  She was surprised that we hadn't gone with her recs. of no reversal and CAPOX.  At our first meeting she was surprised when I told her that CAPOX vs. CapMono only adds a ~5% increase to DFS and OS, at the greatly increased risk of perm. neurotoxic effects.  She was sure the positive effect was quite a bit more then that.  The MOSAIC study says otherwise.  Anyway, then she told my wife that if she doesn't do CAPOX, they may withold treatment. Luckily I wasn't in the meeting. The Onc. said she'd need to meet with the onco. team and get back with us on monday, with their decision.  Meanwhile the surgeon had an opening today, 2 days earlier then scheduled, and I am sitting next to my wife who is completely out of it, recovering, as I write this.

Surprisingly, while waiting to go to the OR, this morning.  My wife received a call from her Onc.  who seemed in a very happy mood and told her that CapMono would be no problem and wished her a nice sleep after the surgery and would like see her in a few weeks.

Maybe she learned a few things at the Onc. meeting?  Namely, the MOSAIC study is correct and CapMono is still considered a frontline Standard of Care treatment for CRC.  

Adam

SandiaBuddy's picture
SandiaBuddy
Posts: 841
Joined: Apr 2017

Adam:  Congratulations on your wife's surgery and success in getting the treatment she desires.  It is just another example that one needs to be their own advocate in this process.  Here's hoping for great results as you both move forward.

Annabelle41415's picture
Annabelle41415
Posts: 6123
Joined: Feb 2009

Thank you for the update and glad your wife is doing fine.  You sure have your wife at heart while writing on this board trying to figure out the best for her and that is awesome.  Glad that oncologist has approved the CapMono (I'm not familiary with it) was a good call and moving forward with it.  Wishing your wife the best and hope she recovers soon.

Kim

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Interesting. Good for you for being proactive! I hope she feels better soon.

Jan

nuc
Posts: 22
Joined: Jun 2019

Thanks Buddy, Jan and Kim for the good wishes. :)

For Kim, CapMono is Capecitabine Monotherapy. CAPOX, without the oxaliplatin.  Capecitabine only.

Adam

Msboop15's picture
Msboop15
Posts: 78
Joined: Apr 2019

As Buddy said, while we walk this path, self-advocacy is so important.  I think sometimes the Oncs get in a rut...”that’s what we always do” and so that’s what they do. When we self-advocate we “wake” them up IF they listen. So happy your wife is making Decisions that seem best for here. I am a firm believer that we have most of the answers if we listen to our intuition. Best as she recovers!

danker's picture
danker
Posts: 1176
Joined: Apr 2012

Nine years ago I had Chemo and radiation simoustanily.  Six weeks after that I had my iliostomy reversed.  I have been NED ever since.  

Currently age 87.  Only side effect is occasional diharrea which I control with lomotil.  Living a normal lifethese many years!!  Hope you have same experience!!  Good luck!

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