Some surprising developments

12 years 1 month ago #39576 by DougG
Replied by DougG on topic Some surprising developments

I'm impressed with your positive attitude. Please take a picture of your knitting project when it gets underway. Hope it and the chemo go well. Know you are in our prayers.


PS It does suck!

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12 years 1 month ago #39573 by GKLINE
Replied by GKLINE on topic Some surprising developments
Jean....... What the Heck! Five years is supposed to be the BIG celebratory anniversary! I am indeed sorry to hear about this. I know you are the type to "push on through" this next bump, but It
is a shock to you.

This brings up a fear I have had since I was first on this site; I remember asking if this cancer can come back after neo surgery......... Mike replied that I would probably die of something other than bladder cancer. Like a car wreck or cliff diving or some other form of cancer. I still wake up at night wondering if there is still a cancer cell lurking around looking for a place to land. Sorry for the rambling, but you brought it out again.

I am indeed sorry for your 5 year gift. Give em hell! And keep us informed as to the steps to your cure..... Again.

Prayers for you


Light a man a fire and he is warm for an evening.
Light a man ON fire and he's warm forever.

08/08/08...RC neo bladder
09/09/09...New Hip
New Man! [/size]

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12 years 1 month ago #39571 by Lynda
Replied by Lynda on topic Some surprising developments
HI Jean - Sorry to hear you're joining the chemo ranks. I'm currently doing the exact same drugs and schedule you'll be doing. I have had great success (4 months in and tumors shrunk by 33%!!!!!). They can do so much now it's amazing. Your knitting will keep you busy, but remember you may get to the point where even that is not something you can do. I have had only the fatigue to deal with and had to have a blood transfusion a week ago Friday because of low counts. The port is wonderful!! Your veins and skin are doing a happy dance. When you get started in chemo they can give you a spray to numb the area for the "poke" or give you a cream to put on a couple of hours before. Spray works but cream works better. I just recently developed the nausea issue, but find that crystalized ginger worked better than any Rx. Good luck with everything. I have a great support system of family and friends and hope you do too. I'll keep you in my prayers and look forward to an all clear from you in 6 months!!



3 years UTIs
Indiana Pouch - July 2010
Pulmonary Met. - May 2011
Chemo started June 2011

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12 years 1 month ago #39531 by Patricia
Replied by Patricia on topic Some surprising developments
Jean.........that sucks.
Gotta tell you my surgeon Dr. Inderbir Gill is doing some incredible laparoscopic liver surgery with mets. If it were me and i met the criteria i would be on the next plane to USC/Norris.
He is a master with the scalpel.
Heck i can't even find anyone around this city that knows what to do with a rash i have gotten around my stoma but its a large area and itches like poison ivy. The uro's prescribe lotion that has fragrance in it...i'm allergic to one said not to use if you have a sulfa allergy..yep i've got that....i've put everything but peanut butter on it. I'm going to try oatmeal next! I sure wish i could find answers for my own weird problems!
xxooo pat

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12 years 1 month ago #39528 by Jmema
Replied by Jmema on topic Some surprising developments
My oncologist, Dr. Magnifico (his name suits him well because he is magnificent) has chosen genzar and cisplatin. Pretty straight forward 3 week on, 1 week off. Hopefully we will get 6 rounds. I remember my little Claire called cisplatin the devil. He said he has some very effective drugs for nausea and fatigue will be my biggest problem. I have a lot of knitting projects I have bee wanting to do for quite some time and this will be a good opportunity to get to it. I get my port tomorrow so I will be ready for next week.
I hope you are managing well with your one kidney and are feeling well. I enjoyed your wedding video so much. You and Ed have something very special.
I will keep you posted.

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12 years 1 month ago #39523 by mmc
Replied by mmc on topic Some surprising developments
What the hell??? That really sucks Jean!

So sorry to hear it came back after all that time. I guess we all know it can but we sure hate to even hear about it happening after that long.

I hope they are able to do something about it and that the chemo goes well.

I understand your prior and current stance on the chemo thing. I'm kind of thinking the way you were but don't know if I'll still think that way if I wind up with mets.

Going to send a note to my doc today to schedule my 3 year follow up.

I really, really, really hope that everything goes well for you!


Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...

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