11 months 3 days ago - 11 months 3 days ago#58081by Atlanta51
Sara Anne, I am waiting for BCG to become available again, too. I have had 9 treatments and my recent cystoscopes and FISH results have been clear.
During the interim, my urologist has suggested Gemcitabine, but I would prefer to stay with BCG if it becomes available soon. Do you have a link or article which discusses the potential availability in September? Thanks.
Glad to hear that the shortage may soon be over. We are just at the start of this journey. I am hoping they keep it at half dosage. If it does the same job. I just pray he dosnt have any bad side effects from it. He has had two so far and we are thinking this isn't so bad. I guess what you are saying is that it may not always be so easy. Yes we are very lucky to live in Illinois but only 50 or so miles from some very good hospitals. Thank you so much for the well wishes. I love this site. Has answered a lot of questions for us.
Barnes is an excellent place for your husband to be treated, The fact that they are using 50% of the usual dose shouldn’t affect his response at all . What most people don’t understand is that there is no scientific reason for the doses that are used It just so happened that that was the dose available when the initial studies were done and they showed that BCG was effective When people end up with intolerable side effects the initial dose has been reduced to as much as 10% of the initial dose with no loss of effectiveness. Merck has stated that the shortage should end by September
Yes fatigue is the most common side effect of BCG. Because the purpose of BCG is to kick up the immune system the side effects can become worse as the treatments go on . This is exactly what we want to happen because it indicates that the BCG is working
Wishing your husband and you all the best
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Hi, I am new to the site. Thank you for letting me join. My husband was diagnosed with early stage, non invasive, high grade bladder cancer. He had the surgery to have the tumor removed from his bladder. Not sure of all the terminology yet. Was a very small tumor not into the muscle. Of course I started researching everything I could find and came across this site. So happy I found it. He just had his second BCG treatment today. He is having 1 treatment a week for 6 weeks. He is being treated at Barnes Jewish Hospital in St. Louis, Mo. Before he even started his BCG. We got a letter from them telling us there was a shortage of BCG. Of course I am afraid they have none for his treatments. I called and they said he was all ready scheduled for the next 6 weeks. So they already had his. When he went to have the first treatment they told us he would only be given 50% strength. That it would still work just as well. They had to do this to have enough for everyone. They said each hospital was only given so much and they were trying to treat everyone. The nurse doing the treatment said she had only seen 3 shortages in 15 years. So we are hopeful that at 50% it will work just as well. So far no real side affects. Other than tired and treatments were very easy for him. We were really worried about that.