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I finally made it through my 6 maintenance rounds with 3 postponements, and the last 3 BCG installations were 1/2 dose. I had my cysto on April 1st and was happy to learn that I was BC free!!!!!!!!!!!!!!!!!!, again. ;D

I still have some BCG treatment side effects, and they are slowly getting better. Biggest problem now is still the instant urge to void without any warning and pain if I don't immediately void. My Uro said that while the bladder looked fine, he felt that I was still affected by the BCG. Next cysto in 3 mos. (39 more to go). :o

Sure seemed like this last 8 mos. has been a fast

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Hi everyone, thank you all for caring. Joes lymphoma is stage two , confined to the groin area, He had his first chemo mon and is very tired , tonight he threw up for the first time, so now I guess it will be about getting into a new way of living for awhile.
    We got some very bad news on Mon morning . Our nephew Jimmy who was 36 died. Jimmy was on blood thinners and fell down the steps carring a load of clothes. He hit his head ,they got him to the hospital but couldn't save him , he bled into his brain. Jimmy leaves behind his wife 6 year old daughter and 2 year old son. Joes to sick for

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The fifth and sixth instillments went much like the fourth.  This has become very routine now, though it still puts me out for a day due mostly to the flu-like symptoms and the need for a dedicated bathroom.  Resting on the day of the treatment has helped me to recover fully, more

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Hi everyone, hope you are all well. Tomorrow we go back to the hospital for the first chemo treatment, they are going to keep him because they expect the tumor to die off fast and they have to make sure it doesn't ruin his kidneys. He told me to go skiing today as it was the last day of the season, I went but didn't stay long , it's like my son said whats the point.
  I have been thinking of my bladder cancer more and I guess that is natural, and I wonder does it scare me yet. I know to some I might sound flip about the bc sometimes and if I have ever offended anyone that is going thru the

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I feel now that I am on the up swing.  I do feel I have had one of the top Urologist in the country.  So many surgeries to fix the fistula because he desperately wanted to save my bladder because of my age.  My Uro is Rodney Appell with Baylor in Houston and the surgeries were done at Methodist in Houston.  All except the hysterectomy and the first repair.  I am anxious to get the Urodynamics done next week to see what they find. I know that the bladder neck was spared during surgery and I have do have a sense of urgency but it just all falls out by the time I get there.  I have every

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My story is quite different from most on this site, but it is the ONLY place I have been able to find anyone who has had their bladder removed and replaced with intestine.  In July 2005 I had a radical hysterectomy and had severe complications.  When I woke up in ICU I kept telling everyone my bed was wet, they said the catheter was just leaking.  A couple of days later the catheter was removed and I immediately urinated everywhere and their answer then was that the catheter had just been in longer than usual and it might take a few hours or a couple of days for everything to settle down.  I

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Hi everyone, thank you for all your kindness, I took my husband back to the hospital the next day and they put the port in. I was doing pretty good then I caught the creeping crud in the hospital and ended up pretty sick.
    I guess just having my own tur done and then this has left my body worn down. It is hard to keep it together when you feel so tired and sick yourself. I can,t evan walk like I do to get rid of the stress. I keep forgetting to set up my next scope . Thank you all again for  your kindness you are all in my thoughts. Rocky
 

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Hi everyone ,thanks for the good thoughts. It is diffuse large cell b type. They are doing a pet scan and bone marrow next week to find out more about the lymphoma.
  The oncologist had a fellowship in bone marrow transplantation at John Hopkins so she has to be on the ball I guess . She wants to start chemo now ! She said this is an agressive type ,but because of that it should respond to the chemo .
  The hospital discharged us at 9:45 tonight and we had an hour ride home, we waited all day for a port to be put in but the surgeon couldn't get to him , so it is now 12:30 and I am very tired

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The fourth instillment was very smooth.  I did a couple things differently.  First, I asked the nurse if I could lie on my stomach for a few minutes before leaving the office (to try and get the BCG up into the "bubble" area in my bladder early).  Once home, I followed my usual routine, but this time pushed past the "bladder spasms" as long as possible.  This was the first day that I had blood (not clots) in my urine, but it was only a very small amount.  I am realizing a pattern: soon after the treament (within the first two hours) I begin to get an unusual feeling in my nose, and begin to

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  Hi everyone,  Thanks for the quotes the mother t one gave me a chuckle.
  It is lymphoma, now they just have to figure out what kind . The leg is really swollen and the worst part is not having the time to do any research  (because it is acute) to find out where and who is the best to treat this , at least with my b.c. I had time to figure out who was the best in my area (John Hopkins). I got to come home for a couple of hours today while my daughter sits with my husband so I will start trying to figure it all out.
  The staff where he is are wonderful but the place is filthy !! They

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