@jlopez7868
Thank you. This side effect I had was very rare and I am sure you will do fine with your treatments. I was just upset as my Urologist and the Nurses never told me this could happen. I found out about it on Inspire a support group for bladder cancer. You should check that site out also.
Just an update, after initial round of six with no early issues except for the normal burning and urgency then flu like symptoms after the 5th snd 6th instillations. My first maintenance treatments continued to give me more issues including hematuria, body aches, headaches, nausea and fatigue. I had my second maintenance treatments ending three weeks ago and side effects worsened. My GP believes that I had an autoimmune event causing reactive arthritis in my hip and knee. I think I’ve had my last BCG treatment but it has kept me NED for over a year so I’m still an advocate for the treatment if you can tolerate it. The evidence for its prevention of tumor reoccurrence is very strong so I wouldn’t forego it even for non muscle invasive high grade tumors. Often even low grade patients get some BCG treatment.
Just an update, after initial round of six with no early issues except for the normal burning and urgency then flu like symptoms after the 5th snd 6th instillations. My first maintenance treatments continued to give me more issues including hematuria, body aches, headaches, nausea and fatigue. I had my second maintenance treatments ending three weeks ago and side effects worsened. My GP believes that I had an autoimmune event causing reactive arthritis in my hip and knee. I think I’ve had my last BCG treatment but it has kept me NED for over a year so I’m still an advocate for the treatment if you can tolerate it. The evidence for its prevention of tumor reoccurrence is very strong so I wouldn’t forego it even for non muscle invasive high grade tumors. Often even low grade patients get some BCG treatment.
@quahog my husband is going to the VA tomorrow for his TURBT. Don't know much right now as far a type or stage. I'm glad you got through it well. I'll be praying for your continued healing and health. Just joined this group yesterday. So hello to everyone. My name is Chris.
Just an update, after initial round of six with no early issues except for the normal burning and urgency then flu like symptoms after the 5th snd 6th instillations. My first maintenance treatments continued to give me more issues including hematuria, body aches, headaches, nausea and fatigue. I had my second maintenance treatments ending three weeks ago and side effects worsened. My GP believes that I had an autoimmune event causing reactive arthritis in my hip and knee. I think I’ve had my last BCG treatment but it has kept me NED for over a year so I’m still an advocate for the treatment if you can tolerate it. The evidence for its prevention of tumor reoccurrence is very strong so I wouldn’t forego it even for non muscle invasive high grade tumors. Often even low grade patients get some BCG treatment.
@quahog my husband is going to the VA tomorrow for his TURBT. Don't know much right now as far a type or stage. I'm glad you got through it well. I'll be praying for your continued healing and health. Just joined this group yesterday. So hello to everyone. My name is Chris.
@quahog my husband is going to the VA tomorrow for his TURBT. Don't know much right now as far a type or stage. I'm glad you got through it well. I'll be praying for your continued healing and health. Just joined this group yesterday. So hello to everyone. My name is Chris.
@dallio Hope your husband has great results. They probably won’t have a definitive diagnosis of the tumor right away but the doc should have an opinion after the procedure. This forum is a very good resource and answers a lot of questions that all new patients have. Glad you found it. Good luck to you both.
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.
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.... Welcome to Connect Bladder Cancer Chris. Not that you ever wanted to need to learn more about this topic. There is a lot of good information available here with a little searching. My husband was diagnosed in 2019 and has dealt with a highly aggressive tumor which was resistant to BCG maintenance treatment. His being muscle invasive he was started on a chemo regimen about a month after initial surgery. Those were every 3 weeks. The BCG infusions were weekly to start for 6 weeks then went to a less frequent maintenance schedule. Because his kept recurring he tried Keytruda Immunotherapy also with no luck. He now has a neobladder after radical cystectomy but is cancer free after that massive surgery. I hope your husband's surgery goes well and his recovery is rapid. Just knowing the results and making a treatment plan will help to relieve your stress.
@dallio.... Welcome to Connect Bladder Cancer Chris. Not that you ever wanted to need to learn more about this topic. There is a lot of good information available here with a little searching. My husband was diagnosed in 2019 and has dealt with a highly aggressive tumor which was resistant to BCG maintenance treatment. His being muscle invasive he was started on a chemo regimen about a month after initial surgery. Those were every 3 weeks. The BCG infusions were weekly to start for 6 weeks then went to a less frequent maintenance schedule. Because his kept recurring he tried Keytruda Immunotherapy also with no luck. He now has a neobladder after radical cystectomy but is cancer free after that massive surgery. I hope your husband's surgery goes well and his recovery is rapid. Just knowing the results and making a treatment plan will help to relieve your stress.
@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?
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 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.
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@jlopez7868
Thank you. This side effect I had was very rare and I am sure you will do fine with your treatments. I was just upset as my Urologist and the Nurses never told me this could happen. I found out about it on Inspire a support group for bladder cancer. You should check that site out also.
Just an update, after initial round of six with no early issues except for the normal burning and urgency then flu like symptoms after the 5th snd 6th instillations. My first maintenance treatments continued to give me more issues including hematuria, body aches, headaches, nausea and fatigue. I had my second maintenance treatments ending three weeks ago and side effects worsened. My GP believes that I had an autoimmune event causing reactive arthritis in my hip and knee. I think I’ve had my last BCG treatment but it has kept me NED for over a year so I’m still an advocate for the treatment if you can tolerate it. The evidence for its prevention of tumor reoccurrence is very strong so I wouldn’t forego it even for non muscle invasive high grade tumors. Often even low grade patients get some BCG treatment.
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3 Reactions@quahog my husband is going to the VA tomorrow for his TURBT. Don't know much right now as far a type or stage. I'm glad you got through it well. I'll be praying for your continued healing and health. Just joined this group yesterday. So hello to everyone. My name is Chris.
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2 ReactionsIt is very encouraging that you haven't had a recurrence in over a year due to BCG. I'm glad to hear it and may the success continue.
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1 Reaction@dallio
I hope your husband does well with the TURBT and wishing him good luck.
@dallio Hope your husband has great results. They probably won’t have a definitive diagnosis of the tumor right away but the doc should have an opinion after the procedure. This forum is a very good resource and answers a lot of questions that all new patients have. Glad you found it. Good luck to you both.
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.... Welcome to Connect Bladder Cancer Chris. Not that you ever wanted to need to learn more about this topic. There is a lot of good information available here with a little searching. My husband was diagnosed in 2019 and has dealt with a highly aggressive tumor which was resistant to BCG maintenance treatment. His being muscle invasive he was started on a chemo regimen about a month after initial surgery. Those were every 3 weeks. The BCG infusions were weekly to start for 6 weeks then went to a less frequent maintenance schedule. Because his kept recurring he tried Keytruda Immunotherapy also with no luck. He now has a neobladder after radical cystectomy but is cancer free after that massive surgery. I hope your husband's surgery goes well and his recovery is rapid. Just knowing the results and making a treatment plan will help to relieve your stress.
-
Like -
Helpful -
Hug
1 Reaction@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.