@sepdvm good morning. We had the TURBT yesterday and it went well. Our doctor told us it's impossible to get BCG anywhere these days yet I see many on this website receiving this treatment
Has anyone experienced having an issue with availability? What are our options?
@dallio hi again. My local urologist was only going to give me a half dose of BCG so I messaged Mayo. Head of urology said that he would not recommend half dosages. Locally, this health system commands a 7 hospital network. Hard to believe they could not command a full dosage. Mayo had the full dosage available so I received BCG treatment there.
@sepdvm good morning. We had the TURBT yesterday and it went well. Our doctor told us it's impossible to get BCG anywhere these days yet I see many on this website receiving this treatment
Has anyone experienced having an issue with availability? What are our options?
@dallio the larger medical centers and cancer centers seem to have BCG available, from what I have seen on Connect. It was in short supply when my husband was having BCG but our local hospital was able to get it. Probably having the right connections through distributors is the key. The more your use it, the more likely you will be at the top of the list for supplies. Are you seeing a medical team locally or at a larger referral center?
@dallio the larger medical centers and cancer centers seem to have BCG available, from what I have seen on Connect. It was in short supply when my husband was having BCG but our local hospital was able to get it. Probably having the right connections through distributors is the key. The more your use it, the more likely you will be at the top of the list for supplies. Are you seeing a medical team locally or at a larger referral center?
@sepdvm my husband is going to the VA. He's a disabled veteran. Lost his leg in Vietnam. Wondering if I should check around with other urogists. Thanks for your quick reply. They told us you will take 2 weeks for the pathology. We're in Cape Coral Florida and they have to send it to the VA in Tampa
Had my first BCG treatments this morning, I requested lidocaine and didn't have to use it, nurse used a pediatric catheter, didn't feel a thing, no pain no pressure, now just waiting, have another hour before I can pee and drink. One down 5 to go
@sepdvm good morning. We had the TURBT yesterday and it went well. Our doctor told us it's impossible to get BCG anywhere these days yet I see many on this website receiving this treatment
Has anyone experienced having an issue with availability? What are our options?
@dallio Hi. Mine started a little over six weeks after a scraping. I tolerated the BCG well. Some patients who have had chemo prior cannot seem to tolerate BCG.
@dallio
My only side effect from BCG treatments was burning for the first few times I urinated afterwards and then frequent urges to urinate during the first night afterwards.
Can anyone tell me how long after tumor removal treatments can start
They gave us a follow up appointment for March 23rd
Isn't that a long time before starting? Also, are treatments once a week? Thanks ahead for any replies.
@dallio No your wait till March 23rd is ok..After tumor removal they like to wait for the bladder to heal. BCG is the live Tuberculosis vaccine bacteria…You would not want to get that in your blood system….BCG gives off an immune response so your own body will fight the cancer…Great stuff…It took several rounds of 6 week treatments as cancer came back…Stanford (second opinion) said that sometimes immunotherapy BCG possibly may not work the first time, but to do a second round…Now I have been cancer free for 1 1/2 years!! Always best to get a second opinion from a research hospital in the area of cancer you have…The University Hospital wanted to go the Chemo route….I am glade I got the second opinion! It worked!
@dallio the larger medical centers and cancer centers seem to have BCG available, from what I have seen on Connect. It was in short supply when my husband was having BCG but our local hospital was able to get it. Probably having the right connections through distributors is the key. The more your use it, the more likely you will be at the top of the list for supplies. Are you seeing a medical team locally or at a larger referral center?
@sepdvm most hospitals will take the normal 50mg dose and split it with another patient, thus getting 25mg of BCG. BCG has a shortage World Wide. I have been told that 25mg (1/2 dose) will work just as well as the full dose—but that’s a research question to be answered..I have been lucky and gotten 50mg of BCG for all my treatments. It has a short half life, so must be used in a specified time frame.
Had my first BCG treatments this morning, I requested lidocaine and didn't have to use it, nurse used a pediatric catheter, didn't feel a thing, no pain no pressure, now just waiting, have another hour before I can pee and drink. One down 5 to go
@jlopez7868 I did not know a pediatric Cath could be used…I have had them use a 12 gauge French coude tip, as men have a prostate and anything larger can be painful.
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@dallio hi again. My local urologist was only going to give me a half dose of BCG so I messaged Mayo. Head of urology said that he would not recommend half dosages. Locally, this health system commands a 7 hospital network. Hard to believe they could not command a full dosage. Mayo had the full dosage available so I received BCG treatment there.
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1 Reaction@dallio the larger medical centers and cancer centers seem to have BCG available, from what I have seen on Connect. It was in short supply when my husband was having BCG but our local hospital was able to get it. Probably having the right connections through distributors is the key. The more your use it, the more likely you will be at the top of the list for supplies. Are you seeing a medical team locally or at a larger referral center?
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Helpful -
Hug
1 Reaction@sepdvm my husband is going to the VA. He's a disabled veteran. Lost his leg in Vietnam. Wondering if I should check around with other urogists. Thanks for your quick reply. They told us you will take 2 weeks for the pathology. We're in Cape Coral Florida and they have to send it to the VA in Tampa
Had my first BCG treatments this morning, I requested lidocaine and didn't have to use it, nurse used a pediatric catheter, didn't feel a thing, no pain no pressure, now just waiting, have another hour before I can pee and drink. One down 5 to go
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2 Reactions@dallio
Try a large hospital. As far as I know, there is only one hospital in Tennessee that can get BCG.
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1 Reaction@dallio
My only side effect from BCG treatments was burning for the first few times I urinated afterwards and then frequent urges to urinate during the first night afterwards.
-
Like -
Helpful -
Hug
1 Reaction@dallio No your wait till March 23rd is ok..After tumor removal they like to wait for the bladder to heal. BCG is the live Tuberculosis vaccine bacteria…You would not want to get that in your blood system….BCG gives off an immune response so your own body will fight the cancer…Great stuff…It took several rounds of 6 week treatments as cancer came back…Stanford (second opinion) said that sometimes immunotherapy BCG possibly may not work the first time, but to do a second round…Now I have been cancer free for 1 1/2 years!! Always best to get a second opinion from a research hospital in the area of cancer you have…The University Hospital wanted to go the Chemo route….I am glade I got the second opinion! It worked!
-
Like -
Helpful -
Hug
1 Reaction@sepdvm most hospitals will take the normal 50mg dose and split it with another patient, thus getting 25mg of BCG. BCG has a shortage World Wide. I have been told that 25mg (1/2 dose) will work just as well as the full dose—but that’s a research question to be answered..I have been lucky and gotten 50mg of BCG for all my treatments. It has a short half life, so must be used in a specified time frame.
@jlopez7868 I did not know a pediatric Cath could be used…I have had them use a 12 gauge French coude tip, as men have a prostate and anything larger can be painful.
ask them next time you go, it is so thin you won't feel it, had lidocaine just in case but none had to be used, good luck