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update just needing prayers and cyber family love

johnnybegood's picture
johnnybegood
Posts: 1122
Joined: Oct 2008

I know its been awhile since i have updated you with all my recent problems.after the stent was put in my bile duct because the tumor on my pancreas was blocking it i gained my strength and continued on with irrtiatecan and avastin.i had this dose even lower because liver enzymes were still up.then in 2 weeks went in for chemo liver enzymes were much lower so i went back on my original lowered dosage.a few days later i noticed something very upsetting going on with my body.called my surgen for an emergency appt.had to do a ct scan(this was not our normal ct scan)after scan went to see surgen i wont go into detail of what he said because it is very embarrasing but i will tell you all that i have a rectovaginal fistula(you can look it up on line if you want to know more about it)and also more bad news just kept coming.this fistula is right where he put me back together in 2008 and i will have to be off chemo for 2 to 3 months.right now im just waiting for time to pass as i have to be off avastin at least 6 weeks so i dont know as of yet when surgery will be.surgen also told me that this type of surgery is very complicated for the surgen and until he can get in there and look there is a chance he will not be able to fix me.we did not go into detail of the surgery yet im just working on bulking my stool up and having a very hard time with all of this.in the mean time i already had a pre scheduled appt with my chemo onc a week later and surgen said he would have a meeting with him and tell him i would be off chemo.the chemo onc appt did not go well.it was like he insisted that the chemo had not done this to me when my surgen(who i trust)told me it was the chemo that put me in this situation.chemo onc wants me to try regorfenib(sp).im just taking it one day at a time then when the time comes to have surgery i will try to get thru that but my friends im telling you now im having feelings of not even going back on chemo as i sit here typing this with tears running down my face i thank all of you for your love and support on this board.there are no other words to say except everything is in Gods hands and i know i will be ok....Godbless...johnnybegood

maglets's picture
maglets
Posts: 2416
Joined: Jun 2006

tears and tears running down my face.....you are an angel filled with grace.....always filled with grace.  I love you JBG whoever you are......what a strange thing this forum is.....so many years....so much shared stuff.....what is this connection never having met just sharing this disease. Wishing and wishing I could hold you darling girl.......

2nd momma mags

UncleBuddy
Posts: 662
Joined: Aug 2013

I am so sorry to hear this. You have been through so much. I'm sending you a big hug and hope this can be fixed.

Lin

annalexandria's picture
annalexandria
Posts: 2268
Joined: Oct 2011

I am just so sorry. This is all so unfair. I wish I could wave a magic wand and lift away all your suffering. Do you think it might be time to seek out a 2nd opinion? It doesn't sound to me like this oncologist is doing his very best for you. I really believe there may still be other options out there for you, but you need a doc who is going to seek out any and all possibilities. You have had so many complications that I can understand why you might feel like letting go of this struggle, but I think there is still reason to have hope.  Clinical trials, perhaps surgery once things heal? I don't know, I just want there to be something more for you to try.

lots o' love~AA

Cathleen Mary
Posts: 600
Joined: May 2011

Oh, dear one, this is out of the ball park not fair! Sometimes I wish our care could have skin on...so we could hug you. I, too, would nudge you to a second opinion. 

Know that you are in my heart and prayer with every hope for a good outcome. 

Hugs,

CM

jen2012
Posts: 1208
Joined: Aug 2012

Oh JBG I am so sad to read this.  As Mags said, it is really strange how much you can care for someone you have never met.  My heart is hurting for you and your sweet mom, and the rest of your family.  I too, hope maybe a second opinion or trial might be something you can do.  I know how hard that must be to think about when you are feeling crappy.  Hugs, love and prayers being sent your way.

Lovekitties's picture
Lovekitties
Posts: 2961
Joined: Jan 2010

I wish so that you could catch a break with all this.

Regardless of the cause ( I had the same caused by a rectal tumor), it is a complex surgery.  For me they did a total hysterectomy to better get to the site requiring removal of the tumor and repairs to the fistula.  I also ended up with a colostomy, but that has not been a problem to live with.

Was it your surgeon who recommended bulking up your stool? 

My thoughts and prayers are with you as you work thru this latest mountain..

Hugs and love,

Marie who loves kitties

Chelsea71
Posts: 1170
Joined: Sep 2012

Oh JBG, I'm so sorry to read this update. You've had such a long, hard road to travel.  You are in my thoughts.  Wishing for the best possible outcome.  I wish I had some words of wisdom but I don't know what it's like to deal with such problems first hand.  I am in awe of your strength and courage.

geotina's picture
geotina
Posts: 2064
Joined: Oct 2009

I am so sorry you have to go through this.  Wishing you strength, courage and comfort as you digest this recent setback and formulate your plans going forward. 

Love and Hugs - Tina

Nana b's picture
Nana b
Posts: 2975
Joined: May 2009

So sorry my dear friend.  Words leave me, one thinks they have it bad then someone tops your pain and suffering both physically and mentally.  I hate cancer.    I so wish I could visit you and give you a hug!

 

 

 

 

herdizziness's picture
herdizziness
Posts: 3440
Joined: Apr 2010

To say that bites, is an understatement.  I know you just want a little break, and can't get that, and that bites more.  I just want to cry with frustration that you keep getting knocked back, but proud that everytime you manage to get back up and go from there.

Whatever you decide to do concerning your chemo, no matter what, you have all our support.  JBG, you've endeared yourself to every single one of us here, we want success for you, and will send prayers indeed.  

We're here for you.

Winter Marie

janderson1964's picture
janderson1964
Posts: 1679
Joined: Oct 2011

You are making my eyes well up with tears too. You seem to be experiencing one brutal set back after another like our goof friend Craig. I hate to see it and am so sorry that you are suffering mentally and physically. I would imagine the fistula is causing a lot of pain but hopefully you can take advantage of being off chemo and do some things that you haven't felt up to doing while on chemo. You are always in my prayers.

We are fighting such a relentless beast but must keep faith. My faith was rocked a couple of times lately but then you comments and Phil64 comments got me back on track.

lilacbrroller's picture
lilacbrroller
Posts: 304
Joined: Jun 2012

Oh JBG - what a setback. I'm so upset for you. Hang in there - hopefully you can regain some strength and start feeling good again during your break from chemo.

Healing wishes being sent your way

 

KarinLaughing

LindaK.
Posts: 323
Joined: Apr 2013

you are going through so much.  It's exhausting to try to figure out why doctors cannot work together for the patient's sake.  Another major physical problem on top of that is also so hard.  You have everyone's prayers here for some relief and good patient care.  I hope things get a little better each day.  You sure could use a break from all this. 

Linda

Luckygirl2
Posts: 308
Joined: Mar 2012

Prayers and hugs are coming your way. 

 

Debbie

PatchAdams
Posts: 272
Joined: Nov 2011

PLEASE make sure they test you often for UTI's until this is repaired!  I had a friend who'd had loads of surgeries in the lower colon/ rectum for diverticular problems and something else (?).  She had an awful fistula that she did not get treated and she ignored a longstanding UTI which went into her kidneys and then blood stream. She died two weeks ago from an untreated bladder infection.  She had E coli in the blood stream and was very ill for just under a year.  

 

Some studies have blamed Avastin on the formation of fistulas in the rectal, esophageal and other areas.  It's actually listed as a possible side effect.  

karguy's picture
karguy
Posts: 1024
Joined: Apr 2009

I'm sorry to hear about your continuing problems.If anyone deserves a break you do.Try to stay strong,and I will keep praying for you,and sending good vibes.I HATE CANCER.

mom_2_3's picture
mom_2_3
Posts: 937
Joined: Nov 2008

JBG, 

 

I keep you in my prayers.  I hope that you get relief and get back to your old self soon.  I would hug you if I could but I can only send loving thoughts through the air to you from here...

 

Amy

marbleotis's picture
marbleotis
Posts: 498
Joined: Mar 2012

Your post brings tears to my eyes.  We all feel like we know each other and have shared so much. together  I send you hugs and comfort and pray this all works it way out.  You have dealt with more than your share of set-backs.

Please stay strong!

thingy45's picture
thingy45
Posts: 583
Joined: Apr 2011

o dear JBG, totally numb I am. They do not spare you much and your are so sweet and gracefull telling us all this. One thing is for sure, we are all in Gods hands, do not forget that. Hopefully your surgeon will be able to fix the problem.

you and your mom have been in my daily prayers list and always in my thoughts.

indeed strange how a bundle if people all over the world ca.n feel so connected and feel the love being shared for one another and the worries which go with the love.

we only see a picture and have the words we type, but still we are one family.

love and hugs , Marjan

serenity101's picture
serenity101
Posts: 81
Joined: May 2013

Here's another hug to add to the list, along with prayers for successful surgery and for you to be filled with peace.

Serenity

fatbob2010's picture
fatbob2010
Posts: 397
Joined: May 2012

Oh JBG,

I have followed you for quite a while and this set back is heartbreaking.

Not sure anyone can answer the question about whether to continue Chemo.  

((HUGS)) and prayers for wisdom and a skillful surgeon.

Art

johnnybegood's picture
johnnybegood
Posts: 1122
Joined: Oct 2008

all so much for your replies,you all are wonderful people and mean so much to me.so many times i just dont want to post anything because i feel we are all going thru hard times and i dont want to get on here and whine about my troubles.but my mom told me that the people on here really just care about you and this is so true.it is wierd how even though we all have not met but yet we feel a connection to eachother.that is what is so great about our human compassion and love for eachother is all about.(((HUGS))) to you all....Godbless...johnnybegood

jen2012
Posts: 1208
Joined: Aug 2012

We could never think of you as a whiner!!  We do want to offer our support prayers and love, so please continue to update us.

Annabelle41415's picture
Annabelle41415
Posts: 4304
Joined: Feb 2009

Didn't realize that you were battling all of this and I'm so sorry that you have to go through this as well.  I'm praying that the day for surgery comes very soon so you can get back to scheduled treatment.  Have been thinking about you lately and was sorry to hear that you are going through this situation. 

Kim

thxmiker's picture
thxmiker
Posts: 1230
Joined: Oct 2010

We are sending our continued prayers for your strength and healing.  

 

I know you are going through a difficult battle.  Keep up the great attitude. 

 

Best Always,  mike

danker
Posts: 750
Joined: Apr 2012

Having had a fistula, requiring a bag, after my ileo reversal I do indeed know what they are.  I cannot imagine the effect of one with your vagina involved.  You have my sympathy and prayers.  May the doctors be able to solve all your problems!!!

tootsie1's picture
tootsie1
Posts: 5006
Joined: Feb 2008

Oh, I'm sorry about all this. Praying things improve for you soon!

*hugs*

Gail

BusterBrown's picture
BusterBrown
Posts: 221
Joined: Mar 2005

JBG, prayers and thoughts coming your way...

Buster

Helen321's picture
Helen321
Posts: 825
Joined: May 2012

Well I PM'd you before I read this.  A fistula is a pain in the well . . you know where.  I really hope the surgery goes well so you don't have to worry.  Doctors throw around a lot of what ifs and can't dos and then sometimes it works out anyway and you did all that worrying for nothing.  I can tell you that if a a bag is an option, it is not a horrible thing, I've lived with mine a whole year and it makes life a lot easier.  No more running to the bathroom in public places, no more messes and no more leakage.  You can go anytime, anywhere.  I don't want to make your decision any harder since it's my own selfishness but I will say that my vote is another doctor. I hope you get a new wind, you can have my share of the fresh air and I'm sending love your way! . . .And you are not whining=)  We all come on here for the same reason, it's just your turn! 

hippiechicks's picture
hippiechicks
Posts: 340
Joined: Sep 2012

This news is just heart wrenching .. I hope you are able to get some relief soon, dear JBG!  I have not had any experience with a fistula, but have also read they can be common with that particular chemo. I think I would feel the same as others here and seek another opinion at this point.  

Keeping you in prayers! 

Meowycat
Posts: 58
Joined: May 2013

and know that even by posting this horrible event, you are still helping others with your life experiences and information. I'm praying for you and putting out positive thoughts your way.

 

Nellie

Kathleen808's picture
Kathleen808
Posts: 2311
Joined: Jan 2009

Oh jbg, I am so sorry to read abou this latest issue.  You know you can always come here with any news, good or bad.  That is why we are here.  I pray the surgery goes well when the time comes.  I hope your body is getting stron off chemo as you get ready for surgery.

Hugs and prayers.

Aloha,

Kathleen

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