update just needing prayers and cyber family love
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
Comments
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tears
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
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Oh, nooo
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
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Oh sweet lady,
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
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Oh, dear one, this is out ofannalexandria said:Oh sweet lady,
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
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
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Oh JBG I am so sad to read
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.
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Dear JBG
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
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Oh JBG, I'm so sorry to read
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.
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So sorry my dear friend.geotina said:JBG:
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
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!
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Oh hon
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
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You are making my eyes well
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.
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hang in therejanderson1964 said:You are making my eyes well
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.
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
Karin
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I am so sorry
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
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prayers and hugs
Prayers and hugs are coming your way.
Debbie
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UTI plus studies blame fistulas on Avastin
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.
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JBG
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!
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Numbmarbleotis said:JBG
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!
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
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adding another hug
Here's another hug to add to the list, along with prayers for successful surgery and for you to be filled with peace.
Serenity
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