Hi this is a reply to pecwae from Katmondoo

[katmondoo]

Dear pecwae, Thank you for asking about me. I haven't posted about my bladder cancer in a long time. Mostly have been dealing with it. The good news is I am now tumor free. My last two bladder scopes have shown the bladder healing.
I was and still am on BCG injected into the bladder every 6 months. The first time I had a panic attack, couldn't breath and ended in the emergency room (cost a lot of money) and the next day I started a dry cough that lasted all day and all night for several days. This was horrible. The doctor put me on something else that did not work. Finally I went to Shands University of Florida where I am receiving excellent care. The Shands doctor put me back on the BCG with a reduced dose that I am able to tolerate. I hope this post could help others with bladder cancer.
The only other problems I have is fatigue and insomnia. I do not know the cause of this.
If anyone needs help post in mail if you wish privacy.

[flamingyouth]

1. Hi katmondoo

I didn't know there was anyone else here with bladder cancer. I was diagnosed in Nov. '06 and have had two surgeries so far, with mytomycin chemo after the last surgery. I've been clear since 5/07.

I've heard from others on bladder cancer groups that BCG can cause coughing. I'm so sorry you ended up in the ER with a panic attack, how scary. But I'm glad you're getting excellent care now and doing well.

I have a lot of fatigue and insomnia too, as well as a pretty lousy immune system (hence why I've had this flu/bronchitis/pneumonia for going on five weeks now :eyes:).

Anyway, so glad you posted to check in. Take care. :hug:

[katmondoo]

2. Hi, flamingyouth

I had my operations starting in June,06 Had three. I stopped going on planes, everytime I did I got sick, even wearing a mask didn't help.
Be carefull with the pneumonia, hopefully you are on antibiotics. My immune system is also lower. I wash my hands after going to the store and really try to stay away from anyone sick.
I was on the mytmycin after the panic attack. The doctor at Shands said it wasn't doing anything and put me back on the BCG in a diluted form. So far it works.
Take care

[pecwae]

3. Please forgive me for being late in this reply.

I've only just seen your post :hug:

I'm so glad to hear you're going to Shands. From all reports it's an excellent facility.

I'm so sorry about that first experience. Is the cough still bothering you? Are you getting help with the fatigue and insomnia? What about help with strengthening your immune system? How much longer will you have to do the BCG injections?

I'm elated to hear you're tumor free! That's the best news of all.

Sometimes it's hard to keep posting about our conditions. We just try to keep on with a normal life as much as possible and keep the best outlook we can. But, if ever you just need to talk and don't want to post publicly I'm here for you via PM.