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BCG delayed again, WORRIED.

1 year 8 months ago #53063 by Jay
During my first 6 week BCG treatment, I was delayed 2 months after the 1st week because of a BCG shortage. Sara.Anne came to the rescue, told me it shouldn't make a difference, now, over 2 years afterwards, all is well. Jay

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1 year 8 months ago - 1 year 8 months ago #53056 by Sean T
I had a wait too (I forget how long). I too was worried but the folks on this forum assured me my wait was in the normal range and a second opinion confirmed that. But every story and person is different. If you think you are being told to wait too long don't wait, get a second or third opinion.

08/16/16 - TURBT - 1 tumor, T1HG, 7.5 cm x 7.5 cm x 1.8 cm, non-invasive papillary.
BCG treatments (15 rounds total - last March, 2018). As of latest cysto, Sept. 12, 2018 - cancer free!

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1 year 9 months ago #52942 by Jack R
Ray,

I have been a frequent bleeder, as the initial symptom, with BCG treatments, and sometimes for no understood reason. At one point I had to have a bladder bleed cauterized so I would stop bleeding and could continue with BCG. My doctors all claim that it is better to wait than use BCG while blood is present. Dr. Lamm also recommends holding BCG treatments if there is blood; Dr Lamm expects side effects to occur and accepts delays as part of the BCG protocol..

Still, I just want to get on with the program. I don't want to wait. I want to hit the cancer as hard as possible. I get so worked up at waiting.

I am slowly learning to be more patient.

I hope they find an answer for your bleeding and can address the issue of treatment.

Best
Jack

What's with this Bleeding ? 6/2015
DX: HG Papillary & CIS
3 Years and 30 BCG/BCG+Inf
T0 CIS comes back.
BC clear as of 5/17 !
RCC found in my one (only) kidney 10/17
Begin Chemo; Cisplatin and Gemzar
8/18 begin Chemo , round 3
Begin year 4 with cis T0

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1 year 9 months ago #52940 by Alan
That is puzzling as usually the TURB site is healed after 6 weeks with your 3rd dated 1.19.17. I remember passing a clot after my second TURB however, that was at about 14-17 days post so I am perplexed. A 6 week wait is pretty normal time frame so you are somewhat on schedule at the same time you do want to find out why you are throwing clots. I know this isn't exactly what you want to hear but, MSK is considered one of the best so I am assuming they will figure things out. Any other speculation on my part is simply not useful except to say keep us posted and we are here for you.

DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.

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1 year 9 months ago #52939 by raya
Another setback. Had my first BCG session last 3-3-17 Friday. No issues, no pain no sickness. Passed some scab looking material on Sunday, still no pain or issues. Wednesday morning passed a large bright blood clot (Q tip size) that dissipated slowly in the toilet bowl. Passed several more small specks of bright red clots Wednesday and Thursday. Just spoke with the Dr at Sloan Kettering and they are delaying Friday's BCG. I have to go on Tuesday for a cystoscopy to see why I still have blood nearly 8 weeks after TURBT. Dr said they want to see if "Everything is alright". Starting and stopping treatment can't be good at all.

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1 year 9 months ago - 1 year 9 months ago #52868 by Alan
Ray,

I had to wait 6 weeks after my second TURB to be sure I was healed. You should have time to let this work but, I am glad you are on top of it. Another observation is that BCG also works better on high grade tumors which is what you have.

DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.

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