Diagnosed with High-Grade Urothelial Cell Carcinoma - ANYONE?

Posted by so1frustrated @so1frustrated, May 17, 2021

Looking for someone who is/has gone through HGUCC of the renal pelvis willing to share your experience, treatments, etc. Basically similar to high-grade bladder cancer from what I can discern.

Interested in more discussions like this? Go to the Bladder Cancer Support Group.

When I was diagnosed, my first & second opinion Drs wanted cysplatin & gemcytabine chemo . The Dr I chose did a PET scan & no Mets were there. Since there were no Mets the chemo was started.
3 weeks after chemo I went through a radical nephrectomy. Dr said he got all the cancer that he could see. 4 weeks later I insisted on a scan . A lymph node out of the field of surgery was found to have grown twice its original size. Now they want to do immunotherapy . I want to add some natural supplements & treatments. Does anyone have any suggestions

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My husband was diagnosed with T1 High grade bladder cancer in 2020. He has been in a clinical trial for almost 3 years. So far no reoccurance but have been told the cancer will probably come back somewhere. We are trying to put off bladder removal as long as possible. Hoping to find others dealing with this to see what is working for them

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@mamabear2

My husband was diagnosed with T1 High grade bladder cancer in 2020. He has been in a clinical trial for almost 3 years. So far no reoccurance but have been told the cancer will probably come back somewhere. We are trying to put off bladder removal as long as possible. Hoping to find others dealing with this to see what is working for them

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I had stage II bladder cancer in 2022 and was told best approach after being cancer free was still bladder removal. I declined and am using the mechanism the I believe got me cancer free.

https://scholar.google.com/scholar?q=bladder+cancer+curcumin&hl=en&as_sdt=0&as_vis=1&oi=scholart
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@mamabear2

My husband was diagnosed with T1 High grade bladder cancer in 2020. He has been in a clinical trial for almost 3 years. So far no reoccurance but have been told the cancer will probably come back somewhere. We are trying to put off bladder removal as long as possible. Hoping to find others dealing with this to see what is working for them

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My husband had HG noninvasive bladder cancer and went through two Turbts each followed by two rounds of BCG. Bladder was clear after second round. Not considering removal unless cancer returns and is invasive.He is taking vitamins including curcumin.

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@ljashton

My husband had HG noninvasive bladder cancer and went through two Turbts each followed by two rounds of BCG. Bladder was clear after second round. Not considering removal unless cancer returns and is invasive.He is taking vitamins including curcumin.

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Thanks for your reply. Clinical trial won't let him take curcumin with keytruda. Maybe will start when trial is done.

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Can you please tell me where you get your curcumin and what brand you use? I have tried locally with no success. Thanks 😊

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@mamabear2

Thanks for your reply. Clinical trial won't let him take curcumin with keytruda. Maybe will start when trial is done.

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Good luck with clinical trails. Hope you have read about the many likely side effects that may be fatal from keytruda.

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@talltxlady

Can you please tell me where you get your curcumin and what brand you use? I have tried locally with no success. Thanks 😊

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I get my curcumin online because iy is readily available. My choiceof many brands is GNC, but have also used others. I order 1000 mg 95% curcuminoids with black pepper extract. It is water soluble, so doesn't stay in your body long. enhances blood thinners and may inhibit iron absorption if taken at same time. Otherwise can be taken many times a day.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5664031
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@donsunlover

I get my curcumin online because iy is readily available. My choiceof many brands is GNC, but have also used others. I order 1000 mg 95% curcuminoids with black pepper extract. It is water soluble, so doesn't stay in your body long. enhances blood thinners and may inhibit iron absorption if taken at same time. Otherwise can be taken many times a day.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5664031

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Thank you Don

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@donsunlover

Good luck with clinical trails. Hope you have read about the many likely side effects that may be fatal from keytruda.

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everything has risks. didn't go into lightly. he came through with little side effects. didn't want bladder out. been 9 months since last keytruda. He's been great!
wish more research/ funding was available for bladder cancer to find ways to deal with this awful cancer. not much has changed in 30 years. He's been on mostly plant based diet for years. I definitely believe in clean diet and supplements but clinical trial was best option at the time.

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