Not sure if this is the right board

emom,
Good luck to you in your battle.
I had my bladder removed ten weeks ago. There were microscopic cells in the outer layer of my bladder, so I will start chemo treatment soon (I meet with the Oncologist Thursday to set-up the dates). I will be having Cisplatin and Gemzar too.

Now since I am the type of person that wants to know the ending to a book or movie before reading or watching, I wanted to know the sex of my babies before they were born, and I want to know what my wife and kids get me for Christmas before the actual day, I want to know the "worse symptoms" before treatment starts.

Give it to me straight. What were the symptoms and how bad were they?

I am hoping that this knowledge will set me free.

Rick

I am new to this board, but your post seemed to fit with my situation a bit. Your dad is a little older than me. I am a 57 year old mom of seven diagnosed with adenocarcinoma with origin in the bladder, metastised to what we thought were the lungs. Adenocarcinoma is a little bit different than regulat bladder cancer because it can start in any of the organs that have a lining like prostrate, ovaries, lungs...I think it is more common in the lungs, not sure. But mine originated in the bladder. No symptoms ever till Feb 07 when I got a cold and it went into pneumonia and then I had some swelling in my right leg, funny, but no correlation to the leg that anyone could think of...then when the pneumonia didn't want to clear, I noticed a little burning when I'd urinate...menopause, right??, ofcourse!!!! NOT. There was blood in the urine and we decided to shoot for some tests....one led to another...early May I was given the diagnosis.

What a blow! Actually it was more of a shock...how could you have no symptoms and then just have it??? But I did...long story- short...I have just started my fourth cycle of Cisplat-Gemzar and the treatment has been way worse than any sypmtoms I had..wouldn't you know. No surgery was recommended because of course the cancer had spread to the close and distant lymph nodes and,we thought,the lungs...now there seems to be some discrepancy about hwether it is in the lungs because the last scan looks good...however because the distant lymph nodes definitely are impacted, it is considered stage 4.

My cancer, after three cycles, has reduced by about 40%. The lungs look good, the tumor on the bladder (they scraped the tumor inside bladder before chemo)has shrunk to almost invisible...but the lymph nodes are still at about 6cm from 8cm and they are what I think are causing most of my discomfort now...but we'll see with three more cycles of chemo.

My oncologist says that the goal is to get me to 50-60% shrinkage and anything over that is icing on the cake...I love icing and I am aiming for more!! If by the end of the sixth cycle I am only at about 60%, they will stop as that is probably how far they can get me...but if it is higher, we may talk about another couple of cycles to see if we can get more. After that I guess it's just wait and see how long it lasts. I am hopeful that I can have some good time and then see what is on the horizon after that. Aside from the chemo I feel great and would have never believed I had cancer if it weren't for all the scans and proof thru tests. They tell me that cure is not possible and remission is unlikely...but I know that anything is possible so I will let them tell me what they think they need to tell me and I will believe what I want!

The very best to you and your dad. It's a slipppery and scary slope we are on, isn't it? I think it is more like being on a roller coaster. You take care. I would be curious to see what kinds of issues your dad is having with the chemo. I start the cycle with the combo and then two gemzars then a week off and then start again. The cisplatin is the real killer for me...it causes me the most trouble...does it him too?

Diane it does make more sense to do the scan after the 3rd cycle so you really know the outcome and as Wendy mentioned you just never know what effect the chemo will have on your dad he may live longer then they told you no one knows but I am glad to see he is getting the chemo instead of giving up. Wishing you the best, Joe

Quick update on my post. The consultant's secretary has been in touch and told my dad that they want to do the CT scan after 3 cycles (as we thought), so they have rescheduled the scan he was due to have this week, until after the next cycle

thanks for your help

diane

thanks wendy, I will keep you updated with his progress, his third cycle starts next week, and he is coping quite well with the chemo so far

di x

Given your father's relatively young age, he could go on to get a very good response to this chemo combo, and hopefully years of disease free survival. I wish it were a guarantee but unfortunately response to chemo varies with bladder cancer, sometimes it's very successful, and I hope your father falls into that category.
Take care,
Wendy