half way thru chemo, looking towards temp ileostomy reversal

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half way thru chemo, looking towards temp ileostomy reversal

by nvrnrml on Wed Nov 04, 2015 11:40 PM

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After chemo+radiation for 6 weeks and a temp ileostomy, I am 1/2 way thru a 6 month, 12 cycle, chemo regimen of Oxaliplatin/5FU.  If all goes well, my last infusion cycle should start 1/26/16 and end 1/28/16.  

I started to experience tingling, finger locking, and a horrid throat sensation from the very first treatment so my oncologist decreased my Oxaliplatin dose for the 3rd cycle.  While I still get the nasty side effects, they are less intense and they do last for a shorter period of time.  

As I look forward to the ileostomy reversal, I am wondering what to expect.  

I am female, just turned 50, of average or a little above average weight now, non-smoker, otherwise in very good health, used to be athletic (but have turned into a couch potato and am looking forward to getting my life back).  

How long after chemo ends will they consider doing the reversal AND how can I best prepare for it?!  We live in northern California and my surgery will be at Kaiser in Oakland (shout out to Kaiser and the SUPERB care they have given me btw).  

My final diagnosis was a rectal T3,N1,M0 mass which responded well to the chemo+radiation so was removed with very good margins.  It was high enough in the rectum that they were able to preserve the sphincter(s).  

I have no idea what my life is going to be like after the reversal but I have read that I will likely be staying very close to home for at least a few weeks while my colon/rectum/anus get used to being in action again.  

I have an active 8yo and 11yo and am very much looking forward to getting back to my regular physical routine with them but want to be realistic about what to expect.  

Thank you for time. 

:-) Kindly, Tracy 

RE: half way thru chemo, looking towards temp ileostomy reversal

by Stanky on Sun Nov 15, 2015 06:32 AM

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Hi Tracy, You sound like you're in good spirits and holding up well. Keep up the good fight. You'll get through it. :) I'm a 40/yo male, married, three kids (8, 4, & 2) and was diagnosed with stage 3B rectal cancer in November 2014. I've since completed radiation/chemo for 6 weeks, surgery & ileostomy, and chemo for another 4 months. My last infusion was August 24-26, and ileostomy reversal surgery on October 8, 2015. My doctor mentioned surgery would be a minimum of 6 weeks after the last infusion. It gives the body time to recover from all the chemo. There's not a lot of preparation leading up to the reversal. Just don't get sick and conserve your energy. If you got through your initial surgery ok, the reversal should be much easier. It'll be a bit rough for the first couple weeks after the reversal. You'll have many "cluster bowel movements." But it'll get better each day. By Oct 18, I was able to go with the family to the pumpkin patch, and trick-or-treat on Halloween night. Since then I've been to the zoo, mountain biking, and to a kid's birthday party. No matter how rough your first week is, just remember it gets better. My doctor said recovery is 2-3 months till the colon gets a routine going again. Some things that made my recovery easier...1) I used a squeeze bottle to rinse my anus after a BM. Then pat dry with toilet paper. You'll be going frequently and rinsing is much easier on the anus than constant wiping. 2) I take Imodium when I know I'm going out. It'll slow your system down. 3) I take Benefiber daily. It's suppose to clump the cluster BMs together. So, rather than a 2 hour session, I'm now at 30 mins a session. You'll learn how your colon reacts to different foods and your confidence will slowly increase. I hope my experience provided you a little insight on what to expect. Take care, Jeff

RE: half way thru chemo, looking towards temp ileostomy reversal

by Stanky on Sun Nov 15, 2015 06:35 AM

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Sorry. I posted my reply from my phone. All the paragraphs seemed to have disappeared.

RE: half way thru chemo, looking towards temp ileostomy reversal

by valhi on Mon Dec 14, 2015 03:40 PM

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On Nov 04, 2015 11:40 PM nvrnrml wrote:

After chemo+radiation for 6 weeks and a temp ileostomy, I am 1/2 way thru a 6 month, 12 cycle, chemo regimen of Oxaliplatin/5FU.  If all goes well, my last infusion cycle should start 1/26/16 and end 1/28/16.  

I started to experience tingling, finger locking, and a horrid throat sensation from the very first treatment so my oncologist decreased my Oxaliplatin dose for the 3rd cycle.  While I still get the nasty side effects, they are less intense and they do last for a shorter period of time.  

As I look forward to the ileostomy reversal, I am wondering what to expect.  

I am female, just turned 50, of average or a little above average weight now, non-smoker, otherwise in very good health, used to be athletic (but have turned into a couch potato and am looking forward to getting my life back).  

How long after chemo ends will they consider doing the reversal AND how can I best prepare for it?!  We live in northern California and my surgery will be at Kaiser in Oakland (shout out to Kaiser and the SUPERB care they have given me btw).  

My final diagnosis was a rectal T3,N1,M0 mass which responded well to the chemo+radiation so was removed with very good margins.  It was high enough in the rectum that they were able to preserve the sphincter(s).  

I have no idea what my life is going to be like after the reversal but I have read that I will likely be staying very close to home for at least a few weeks while my colon/rectum/anus get used to being in action again.  

I have an active 8yo and 11yo and am very much looking forward to getting back to my regular physical routine with them but want to be realistic about what to expect.  

Thank you for time. 

:-) Kindly, Tracy 

Hi Tracy

I am hopeing you can tell me about your (now) experience with the post surgery chemo? I see you are almost finished. Has it gotten any better? I will be starting the same therapy at end of January.

My first round was chemo (xoluda pill) with rad, that went really well.

Hope you have had all your questions answered, and all goes smoothly for you and the family.

Thanks Val

RE: half way thru chemo, looking towards temp ileostomy reversal

by nvrnrml on Mon Dec 14, 2015 06:32 PM

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Hi Val, 

I, too, tolerated the 6 weeks of Xeloda + radiation well.  And I recovered from the temp ileostomy pretty quickly and, thankfully, knock on wood, it hasn't really caused me any issues since - other than I am not a fan of this "bag" and can not wait for the reversal surgery.

I just concluded cycle #7 of 12 of the chemo infusions (Oxaliplatin/Leuvocorin/5FU).  I started the infusion chemo in Aug but had a month-long delay between #6 and #7 because I just wasn't metabolizing it well and had alarmingly low Neutrophil and platelet counts (even with 3 Neupogen shots after round 6).  

They are making me do 5 Neupogen shots this time (post cycle 7) even though the chemo dose was almost halved.  Hopeful that the Neupogen gets the Neutrophils way up so I don't have to do any Neupogen after cycle #8, or at least, fewer than 5.

I have a "port" catheter.  They are able to do my blood draws and infusions via it.  I just put a little lidocaine on there about an hour before each "poke" and I suffer no pain other than the emotional anguish of a "needle phobe"!  :-(

I go every other Mon for my blood/labs and then if everything looks good, every other Tue for the Oxaliplatin/Leuvocorin infusion (2 hours) and 5FU "push" and then I come home with a "chemo ball" that infuses 24/7 over the next 46 hours via the port.  

They give you anti nausea meds (pills) before each chemo treatment (the Kaiser infusion center nurses and staff are AMAZING - kind, gentle, professional, funny - who all clearly love their chosen profession) and I have not suffered any significant additional nausea.  I also have not lost my hair.  

I really try to make sure I stay hydrated with at least 48oz of water a day (I just can't always make that 80oz goal so I make 48oz the minimum on a "bad" day) and I continue to moisturize my hands & feet frequently so as to avoid that "hand/foot" syndrome.  I have had EXTREME cold sensitivity (can't swallow anything but warm liquids and fingers & toes feel "sliced" when touching anything cool) but this was part of the reason for the month delay and significantly reduced dosage.  I keep gloves handy everywhere, especially, in the kitchen because even getting the milk out of the fridge causes issues.  

The most significant side effect for me really has been the unbelievable exhaustion & fatigue.  I had minor fatigue towards the end of my chemo+radiation cycle but this is the kind of fatigue that frequently makes me lie down for a nap by 2:30p (sometimes by 11am)!  

My worst days tend to be the 3 days after the "chemo ball" comes out, so Fri, Sat, Sun at the end of a cycle.  

Take this time between surgery and chemo to rest, relax, heal and focus.  Have everything on hand that you think you might need so you don't ever have to "want" for something - herbal teas, moisturizers, gloves, warm sox, heating pad/blanket/hot water bottle - all of the things that provide comfort.  

Where do you live?  I am in Sonoma County.  My oncologist and chemo is at Kaiser in Santa Rosa and my surgery was at Kaiser in Oakland.  

Please ask anything you want.  I am not shy about discussing any of this and want people to have as much information as possible so this process isn't a big vacuum like it was for me before I went thru it.  

Kindly, 

Tracy 

RE: half way thru chemo, looking towards temp ileostomy reversal

by valhi on Tue Dec 15, 2015 12:41 AM

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Thanks; looks like I'm just going to follow you on this ride. Appreciate all the info. I guess I'll gather my supplies as I shop for xmas.

Have you tried any vitamins, frankincense, PH water,etc? I'm taking D, B12, C and just starting frankincense.

I live in Citrus county FL. I am having surgery at Moffitt in Tampa or Tampa General through USF teaching hospital. I have second meeting with both the 1st wk of Jan. then I get to pick the winner. :) Not sure if I will need permanent bag.

Thoughts are with you, Val

RE: half way thru chemo, looking towards temp ileostomy reversal

by nvrnrml on Wed Dec 16, 2015 07:38 PM

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I have not taken any other meds or supps besides the occasional Tylenol and Claritin when receiving the Neupogen shots.  

RE: half way thru chemo, looking towards temp ileostomy reversal

by nvrnrml on Fri Jan 01, 2016 11:48 PM

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On Dec 16, 2015 7:38 PM nvrnrml wrote:

I have not taken any other meds or supps besides the occasional Tylenol and Claritin when receiving the Neupogen shots.  

It just occurred to me that I didn't tell you to have good lemon drops and other "fruity" sucking candy on hand.  They help with the weird flavor changes and mouth "slime".  

I have also taken to squeezing a little lemon or orange or lime or a spalsh of cranberry juice to my hot water.  And I am eating citrus like crazy!  

Thinking about you as you head into this phase.  As bad as some of the side effects have been, chemo is not as bad as I thought it was going to be.  I have not been sick to my stomach nor have I lost my hair.  

I hope your regimen goes smoothly without delay so that you get thru it quickly.  

Happy New Year!  

:-) tracy 

RE: half way thru chemo, looking towards temp ileostomy reversal

by valhi on Sat Jan 02, 2016 05:31 PM

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Thanks

Going on list :) "slime" hmmm sounds interesting. This will be quite a journey.

RE: half way thru chemo, looking towards temp ileostomy reversal

by valhi on Tue Jan 12, 2016 01:26 PM

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Hi Tracy

How is everything going?

Thinking of you

Val

I now have surgery scheduled for 26th.

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