Not sure if this is the right board

Prayers are with you...so sorry to hear of your loss.

Just goes to show that we should always be ready.

Had a friend that was getting ready to take her husband to the dr this morning and she fell over and died. Just goes to show that we have no promises and should live every day to the fullest.

Clara

Whoa, that's a hard way to be reminded that everyday is precious...I'm sorry about your loss, my condolences to your family.

I hope you do make contact with someone else with your particular diagnosis...I've read that women with bladder cancer are more likely to have rare cell types than men.You've put yourself out here now and maybe someone will find your story to compare notes. In the meantime you are having the same treatments as others with bladder cancer so at least you can discuss that here.

All the best,
Wendy

Thanks, Wendy. The hard part has been in just finding people I could talk to who had at least a similat type of cancer, although we all know there is no such thing...it is as individual as are all of us!!!

Life is so precarious, just this morning we were called that my sister-in-law who lives in MO was killed in a car accident. She came to be with me in June as a moral support and we had talked about her coming out again in Sept. Little did any of us even dream that something like this would happen. She and I joked about who would have thought I'd be next to go...we don't decide and neither does cancer!!!

Hi Emom of 7,

That's quite a story of discovering your lung problems where actually from adenocarcinoma of the bladder. You seem to be very on top of everything and learning the ropes as you go. Sorry to hear about your side effects from cisplatin/gemzar. I've heard from others that they used L-Glutamine and B-12 to combat neuropathy (that usually begins in hands and feet).

I know that Neupogen has its own side effects like bone pain and fatigue. I wish you well with finishing the treatments and hope they get rid of all remaining cancer.

Wendy

Rick, the cisplatin is the yucky one for me too. Same kind of things, the hearing stuff is yucky...tinnitus and the "sssss" sound is muffled. My oncologist is ordering a hearing test just to get a baseline so we can keep track of if the loss is permanent and just how bad. I understand that sometimes it can be permanent and sometimes goes away after treatment. Mine went away after the first and second cycles, but didn't with the third. It is now constant. I need backround noise to keep my mind off of it which helps for now. The tingling in my fingers comes and goes but hasn't stayed. I get steroid and heavy anti-nausea tablets for three days after the cisplatin/gemzar combo. The steroid keeps me going like the Energizer bunny and I have to take Tylenol PM to sleep those nights. But I get hardly any nausea. I do get my bowels all messed up. They say diahrrea, but mine has been awful constipation and inability to get the bowels moving, very strained. However, this time after my combo last Thursday, I had the constipation followed by diarrhea, so don't know what that is all about, but it is like being on a roller coaster!! Having no nausea I guess is lucky, but believe me, I am having no weight loss...actually I have gained and I didn't need any to gain!

After the three days I then go into a real fatigue mode and the first day after the steroids I just want to eat...but so tired. That lasts about two or three days, although I am in it now so we'll see if it lasts longer since it is the start of the fourth cycle. I also get neupogen to keep my white cell count up. I had to miss the last gemzar of my third cycle and had a couple of others reduced because the white cells were too low. So now we're going to stay on the neupogen to insure that I can get all the chemo.

I do know it is very individual and you can't go by what you read or hear...it is just so individual. But, I wanted you to have my take...I am like you...I like to know what I'm in for before I get into it. One more thing...my mouth does get sore after the combo but not bad. I started to lose my hair and shaved it all off and wished I had waited because now it is growing back in and I think if I had just left it, it would have thinned but not fallen all out. Now it is no longer falling out so I am letting it grow back. But I guess that is individual too! I didn't get a port because it just felt too "medical" to me and the poking didn't bother me, so, so far, I do not have a port. Hope it helps. Good luck!

Hello Rick,

I was 3A at cysectomy/neobladder in March 2007, and started the cisplatin/gemzar 5 1/2 weeks later. The cisplatin is the "bad boy". Side effects for me ....tingly hands but mostly feet, ringing in the ears, and nausea. The tingling and ringing went away on their own maybe 2-3 weeks after the last dose. Dr tried numerous anti puke stuff but I did spend the better part of the last 2 months puking.I needed a few procrit shots and the nypugen during the 4 months of treatment too. I finished chemo 3 weeks ago and I am getting more normal everyday. I just want my normal hair back really bad.
By the way, I have a port in my right chest - it made getting the chemo and other stuff so much easier. All in all, it could have been much worse, just make sure you tell the nurses what side effects you are having - they will be most helpful in getting them treated and alleviated quickest. Bless you - you are in my prayers. Holly