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New to Forum-So Many Questions

Heretolive17
Posts: 2
Joined: Jan 2018

I am pleased to have found this forum and apologize for having so many questions.  As I am sure most of you can understand, my brain is whirling with emotions and I am just trying to cope with something that I never thought could happen to me (fear, depressions, anger). I was diagnosed on October 31 with Rectal Cancer (age 51 male) which the MRI reads as Stage T3b.  After seeing several doctors (one of which simply wanted put me right into a colostomy bag), I decided to go with a surgeon at MSK who (from what I read) is the elite in his field and I trust him completely.  That being said, my doctor put me on a treatment protocol which differs from the other doctors I have met.  Specifically, my doctor has me on a regiment consisting of 8 cycles of chemotherapy (infused oxiplatin every two weeks + Xeloda pills).  After I complete this series which will take about four months, my doc wants me to do 6-8 weeks of chemo/radiation wait another 6-8 weeks and reassess the tumor.  He calls this total neoadjuvant therapy.  He seems to be hopeful of either a pcr (patholoigcal complete response) or a reduction in the tumor size (2.9 cm) so as to allow for sphincter saving surgery.  My questions are:

1. Has anyone been on this treatment protocol and what was their experience?

2. I can't seem to lock my doctor down to the staging of the tumor.  While the MRI indicates that the tumor is a T3b, how does this convert to the actual staging?  My doc tells me that he sees only one suspicious node and doesn't seem to think there is really any nodal involvement. 

3. Assuming the plan at the end of the day is a temporary ileostomy with a takedown sphincter sparing surgery, what can I expect?  I have read horror stories on the internet and almost feel as if I should just opt for the colostomy bag.

Once again, I am sorry for having so many questions and any responses to either some or all of my quesions would be so greatly appreciated.  At the end of the day, I just want to hold my grandchildren and maybe even see them graduate from college.

Trubrit's picture
Trubrit
Posts: 5225
Joined: Jan 2013

And we're here for your questions. Pile them on. 

While I can only address one or a few, others with experince in that area, will pop on, as the days go by, and share what knowledge and advice, they have. 

So, here goes:

1. Has anyone been on this treatment protocol and what was their experience?

I can help you with part of this. I was on FOLFOX. While having the Oxaliplatin, I did 48 hour pump of 5FU - the liquid version of your Xeloda pill -

Side effects. Well, My own personal experience means I could list many, many. But that ightscare you, and others side effects are pretty mild, and others still, fall somewhere in-between. 

You will not know, and cannot tell, just how the chemo will affect you personally.  Some things are prettu much a given, though. Cold sensitivity. Touch something even luke warm, and you're going to get an electircl shot type feeling. Not nice, but short lived.  No cold drinks, gloves on when going into the fridge. Going outside in the cold. Touching door handles.  I dropped more yogurt than the cown producing milk. Not easy to clean up. 

Fatigue can be a problem, is usually a problem. It can vary in degrees, and again, depends on you as an individual. 

Nausea. Take those nausea meds. I skipped my Zofran once, because, holding it under my tongue made me retch. Well, a little retching is just fine, becasue it beats that constant need to throw up. 

I'll let others share some more, for you. I dont want to monopolize. 

I will post the link to my list of FOLFOX side effects, but will warn you, it is not pretty, sometimes graphic, and I was on the extreme end.

I also did 30 radiation treatments while hooked up 24/7 to my cocktail of 5FU.  Radiaton was HELL! Others, not so much. So, prepare for bad and be happy when its good - or goodish -

2. I can't seem to lock my doctor down to the staging of the tumor.  While the MRI indicates that the tumor is a T3b, how does this convert to the actual staging?  My doc tells me that he sees only one suspicious node and doesn't seem to think there is really any nodal involvement. 

The best way to stage a tumour is to have it removed and a biopsy performed. Cutting or needling a tumour can release Cancer cells. Just go with the flow, and call yourself Stage T3B.

3. Assuming the plan at the end of the day is a temporary ileostomy with a takedown sphincter sparing surgery, what can I expect?  I have read horror stories on the internet and almost feel as if I should just opt forthe colostomy bag.

Can't advice at all on this one, but many of my friends here, can. 

Oh, keep a note book. A DETAILED notebook. Everything goes down, even the bogies that feel like razors in your nostrils. Nothing is too small or insignificant for your note book, and then your Oncologist.  Your Oncologist WILL listen to you. If he thinks he's busy, remind him that he isn't. 

Good luck, hardly seems like the right comment. Just know, we're all in the same boat, either ourselves personally, or our loved ones. 

Tru

Tunadog's picture
Tunadog
Posts: 235
Joined: Mar 2017

I was clinically staged at 3b before surgery. I had Radiation/Chemo (Xeloda) and a rest an then a Lower Anterior Resection.

Went in for a 3 hour surgery hoping for an Ileostomy but it turned into a 6 hour cruise as they found cancer spread in the abdominal area. No involvement with any nodes. I woke up with a Colostomy. My surgeon had indicated that if he could get a 1 cm margin we could reverse it, but to close to my anus.

After surgery I had Oxilaplatin and Xeloda for six months. My PET/CT scans back mostly clear with a lighted area near my sacral region which looked like fatty deposits. 

I was staged 2b after surgery. I have Peripheral Neuropathy which is almost resolved after a year and a half.(Oxaliplatin)

I am currently getting a shot of Avastin and 2 weeks of Xeloda as maintenance chemo.

I had a few complications from the infusion, I had a port leak Oxaliplatin in my neck and got a blood clot. It was treated with Xarelto (horrible stuff) for 80 days.

Things are looking up, I hope your treatment goes well.

ThomasH's picture
ThomasH
Posts: 100
Joined: Jun 2016

1. Has anyone been on this treatment protocol and what was their experience?

I have had 12 sessions of the FOLFOX (that is the 5FU stuff with the Oxaliplatin, like TunaDog and Tru). I will concurr that you do not want to miss taking the anti-nausea meds. For my side effects, I had a fever whenever I was on the take home 5FU pump, had a cold sensitivity that increased over the duration of my chemo, and I still have a little lingering neuropathy in the form of numbness in my finger tips. I am now just over a year past my last chemo treatment. It isn't enough to interfere with my day to day life, but during my treatment, I was starting to get to the point where I was beginning to lose my fine motor control for things like typing. I hit a LOT of wrong keys during that time.

 

2. I can't seem to lock my doctor down to the staging of the tumor.  While the MRI indicates that the tumor is a T3b, how does this convert to the actual staging?  My doc tells me that he sees only one suspicious node and doesn't seem to think there is really any nodal involvement. 

I could be wrong, but I think the staging also has to do with the amount of spread, and how much other organs are involved. Mine was stage 4 not because of the size, but because it had spread to the lymph and peritonial tissue. I think the staging also involves how deeply the tumor has penetrated the tissue. Something located on the surface being easier to deal with than something that has penetrated into the muscle wall for example.

3. Assuming the plan at the end of the day is a temporary ileostomy with a takedown sphincter sparing surgery, what can I expect?  I have read horror stories on the internet and almost feel as if I should just opt for the colostomy bag.

I had a temporary ileostomy for about a year, and had my reversal just over a year ago. My cancer was a little further up the line from yours, but my experience with my resections has not been nearly as bad as what I have heard and read about. In terms of pain and discomfort, as long as I payed attention to what I was eating, I didn't have much trouble. What you eat GREATLY affects the consistency of what comes out, and I had to pay a lot of attention to eating foods that caused gas and such. An Ostomy bag can and will inflate like a balloon till it pops right off your tummy, which you REALLY won't enjoy any part of. Overall though it wasn't anything that can't be adjusted to. 

Post reversal, I still have to pay a little more attention to what I eat. I can still feel things like raw vegies or popcorn when it passes over the resection points. Most days I feel more tired than I used to before chemo, but I think that is gradually improving. I have heard it can take quite a while for all the chemo effects to pass. Some people find they linger, but I'm hopeful that I will work through it eventually.

Good luck, and stay positive. That one simple thing will make a huge difference for you.

Thomas

Woodytele
Posts: 163
Joined: Apr 2017

sounds like your dr. Has a definite plan of attack which sounds good.  The oncologists are usually pretty smart about all this stuff, so go with what you think makes sense.  

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

Hello and welcome. This is a really scary and overwhelming time for you. It'll get better and being on this forum is much better than Googling things that may be out of date or not accurate at all.

I didn't have your protocal for chemo so I can't address that. As for staging, they didn't stage mine until I had the surgery to remove the tumour and my understanding is that that's pretty typical. I had a temporary illeostomy done but have decided to keep it. It is reversible but my quality of life is better with it due to previous IBS that severely affected my life negatively. I do sometimes wonder if I'd have been ebtter off with a colostomy but I don't know enough about them to say either way. 

Jan

Cindy225's picture
Cindy225
Posts: 172
Joined: Feb 2017

Oh-my completely understand how your brain is whirling with emotions and trying to cope with your diagnosis.  It’s life changing and feels crazy. I was originally diagnosed with early stage rectal cancer in October 2016 during a routine colonoscopy and later restaged to III B after having the LAR surgery and 7/13 lymph-nodes were involved.  Agree with the other comments that the pathology reports determine final staging.  

I went through 8 cycles of Oxaliplatin and 12 cycles of 5 FU every 2 weeks.  Although, I had all the side effects that have been previously mentioned I got through it relying a lot on mindfulness and walking. I still have some neuropathy in my hands and toes and my hair is finally starting to fill in.  

I also had a temporary ileostomy which was reversed in July 2017. I’m glad I had the reversal but I was anticipating the surgery, recovery and new normal to be the “victory lap” which it was not.  Had I been better mentally prepared that surgery is surgery and healing takes time including the new normal I would have coached myself differently.

Having gone through it all I am currently NED.  I have the 18 month scan in early March so scan-xiety is starting to set in a bit…

That said, life is good now.  Just got back from a mini college re-union in Utah and I am so grateful that I could fly, eat, go to movies and function normally.  I am running again and starting my training plan for a 10 miler in May.  Cancer will always be a part of my life. Right now I’m living life completely.

I know you are at the beginning of your cancer journey. Take it one day at a time...

Cindy     

abita's picture
abita
Posts: 832
Joined: Dec 2017

How much of your hair did you lose? was it just thinning, or did you need a wig? I have long, thick hair. I am hoping it only thins. Silly considering I am stage 4 that I would worry about my hair, but I do.

danker
Posts: 1256
Joined: Apr 2012

I had an ileostomy for 6 weeks.  It wasn't fun, but I learned to cope with it.  Then had it reversed. All that in 2010.  Been NED(no evedence of disease) since.  Only side effect: occasional diahrrea.  Since you are only 51, I consider you just a kid.  I was 77 when dxed- am currently approaching 86. 

It may be a bumpy ride, but it is doable, so just take it a day at a time.  Good luck!!!

Heretolive17
Posts: 2
Joined: Jan 2018

Thank you all for your responses.  I am starting my third cycle today and am quite anxious.  Please keep your responses coming.  I find them quite supportive and helpful in coping with this nightmarish situation.

Cac466
Posts: 12
Joined: Jan 2018

I had a very similar diagnosis/initial staging and treatment plan for rectal cancer.  9’14 and treated at MSK. I did Folfox for 4 months and chemo radiation for 5-6 weeks prior to surgery - all aimed at shrinking tumor enough to have best possible surgical outcome. I had resection and temp ileostomy for 3 months then reversal. Life absolutely has changed - but for me the reversal has been a successful but not at all perfect outcome. 

Expectations perhaps should be clearer from all medical teams - but coming out of chemo and radiation it was hard to mentally prep for anything. for me it has been a do-able while not perfect lifestyle - and am grateful for what it is. Good luck And happy to communicate further

plsletitrain
Posts: 253
Joined: Jul 2017

I don't wanna say welcome to the forum but here we are.  I had 5-Fu with oxaliplatin for 3 cycles, didn't have any problem with that.  I shifted to the oral form of 5-Fu, Xeloda, with oxaliplatin and this time, it was more of a struggle than the 5-Fu.  But they were tolerable.  I also didn't lose my hair, thinned a bit but didn't go bald.   Didn't have nausea and neuropathy.  Just fatigue around 3 days after infusion, mainly because my entire hand is very very numb (the oxaliplatin must be very strong for it to completely numb my hand). I have an ileostomy and have no plans of having it reversed.  Sure, my sleep is interrupted because I have to drain it from time to time, but I'm loving it.  I only have to drain it when its full, as opposed to my life before it when I'm at the bathroom every 10 minutes.  

lhduffer
Posts: 86
Joined: Oct 2015

My protocol was very similar to yours.  I was diagnosed with rectal cancer July 2015 at the age of 50.  My cancer was very low and was a 5 cm tumor.  After CT's, PET's etc. was staged T3N1M1 (stage IVA). I went to the major cancer hospital in Tampa and had an amazing radiation oncologist and surgeon.  My radiation oncologist chose to treat me as stage 3 with "curative" intent although the surgeon told me upfront that if I didn't respond well I would be on maintenance only and no chance of surgery.  If surgery was an option a permanent colostomy was a big possibility.

I did four cycles of xeloda (capecitabine) and oxaliplatin with many side effects from September thru December.  I then did 6 weeks of chemo/radiation in January and February.  At the end of the neoadjuvant treatment I did have a complete clinical response with no sign of the tumor nor the nodes.  Due to the fears of surgery and the prospect of a bag, I contemplated going against their advice and skipping the surgery.  In the end, I decided to go with the LAR surgery (complete removal of my rectum and 12 inches of colon) and woke up to a temporary ileostomy.  They did find one node with cancer still in it so I had a complete clinical response but not a complete pathological response.  Therefore, I am very glad I proceeded with the surgery.  After surgery I then completed two more rounds of xeloda and oxaliplatin.

I had my reversal surgery September 2016 and while it can be challenging, I am glad I had the reversal.  I am very active golfing and exercising and have even taken a trip to Europe with the long plane ride, which I'm not sure I'm up for that too quickly again, but I did it nonetheless.

I go in for my follow up scans in March also, which April will be two years from my LAR surgery so am praying for another report of NED.

As others have said, this can be a difficult journey, but it is doable.  This forum was such a wonderful source of information for me and continues to be a great inspiration.  Everyone will help you along the way.

 

PetMom
Posts: 2
Joined: Mar 2018

Hello, From the sounds of things, I got off pretty easy, I was diagnosed with stage 3 colon cancer 4 years ago, went thru 6 months of chemo treatments every other week, survived that and picked up my life.  Christmas this year found out my cancer had matatasized to my lung.  Had lung surger February 8, no need for Chemo.  So....why am I so depressed.  I've been so fortunate to have excellent doctors and oncologists  and surgical results but I feel no joy.  What can I do?  Is this normal?  I'm so much more depressed than when I was litterly fighting for life.

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

I think that's completely normal. I was pretty upset when I found out mine had gone to my lung, too. I'd thought I'd beaten it for almost a year. It took some time for me to accept it. I'm still choked about it but all the extras I seem to get that have to do with having cancer but not directly from the cancer take my mind off of the cancer itself. It almost seems secondary to the other crap.

I think when you're actually fighting for your life you have a different focus and now it just seems like it adds insult to injury. Sounds like you're doing great, though. Continued good success with it! Yay for no chemo! I start back on it tomorrow.

Jan

Trubrit's picture
Trubrit
Posts: 5225
Joined: Jan 2013

Going so long, feeling so good, thinking 'all is well' and then 'Hey, you've got lung mets'. Its not always easy to pick yourself up after recurrance. I'm thinking that its easy, the first time around, to move on. This time, you know it can return, you'll wait for it to return. You'll know you'll never be free of that fear. 

Be good to yourself. Accept this depression, this low mood; keep an eye on it, so that it doesn't become you, doesn't rule YOU. Be in charge of the emotion. 

Then one day, hopefully real soon, you'll lift your head, see this new normal, and know just how to handle your life moving forward. 

I always suggest meditation, becasue it works for me. Its not everyones cup of tea, but worth a try. 

You are welcome to our forum, and we are here to help. 

Tru

airborne72's picture
airborne72
Posts: 278
Joined: Sep 2012

Tru:

I know that you meant to type "gut punch" instead of guy punch but maybe this is one of those Freudian slips?  Do you not like us guys?

Just teasing.  Keyboarding with a cast is challenging.  I once fractured my wrist (dominant hand) and was casted up to my shoulder.  My writing was terrible, but it resembled the handwriting of a doctor.

Regardless, we've just got to keep rolling with the punches, even if some guy did it to us.

Jim

Trubrit's picture
Trubrit
Posts: 5225
Joined: Jan 2013

It is true. It is hard to type with a gammy hand. 

I've been thinking of you today, Jim. I think you were getting your CT results. Hope all went well.

tru

kmygil
Posts: 881
Joined: Feb 2007

I had my colon resected before chemo, but my tumor was in the hepatic flexure, far away from my rectum or anus.  Then I was scheduled for 12 rounds of Folfox (5FU, Oxaliplatin & Leucovorin). I only managed 9 of the 12 rounds, but it appeared they did the job.

Side effects on the chemo were many and not pleasant for me, but everyone seems to be different.  Of course there was the cold sensitivity.  Always carry gloves or you might end up hurling a pound of ground beef across the supermarket, LOL!  All drinks either warm or lukewarm.  Take your nausea meds.  But MOST IMPORTANTLY, keep up with your hydration and nutrition even if you don't feel like eating or drinking.  When you already feel like crap, being further weakened by poor nutrition and low blood pressure can make it a lot worse.  I cannot emphasize this enough.  You don't have to eat a lot, but do eat foods high in nutritional value and keep drinking water or whatever you can tolerate.  Also, even if all you want to do is sit or lie down, get up and move.  Walk to your mailbox.  Walk up the street.  You don't want a blood clot on top of everything else.  Chemo patients tend to develop clots more than others, so keep moving.  

Do tell your physician if your neuropathy has not abated by the next scheduled treatment.  It may have to be postponed.  I lied because I wanted it OVER with and have permanent neuropathy in my feet and lower legs as a result.  Go ahead and postpone.  If you get a bad taste in your mouth, sugar-free lemon drops help cut it.  Also check to be sure that bad taste is not yeast in your mouth.  Remember, chemo is scorched earth and will kill off a lot of beneficial organisms in your body like those that keep yeast in check.

Finally, if you get down, never hesistate to get help via antidepressants or antianxiety medications or a combination thereof.  The point is to get through this as intact as possible!  

As for 'ostomies', I was lucky enough to have a sucessful anastamosis done right off the bat, so I cannot advise you on this.  

Believe in yourself.  If you are a person of faith, use it.  Ask all the questions you have; a good doctor will not hesitate to answer.  Finally, trust your chemo nurses.  They are awesome!

Best of luck to you.

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