Anyone have cancer with unknown primary?

Posted by rita8898 @rita8898, May 20, 2019

Anyone suffering from cancer with unknown primary?

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

@tobydrake7

Seems relevant to my situation. Do you know if the Mayo Clinic offers this treatment? I am being treated by a local oncology team here, in New Orleans. I am also being tested/treated at MD Anderson. I don’t see this treatment on offer by these institutions. ChatGPT lists a few places; Germany, Japan, etc.
see https://chat.openai.com/share/299f1bc3-12cf-427f-a27e-b00dc714ef86

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I’m in the UK. I know they do the latest PIPAC in Germany and Spain. I think here too. There may be trials in US and I have no idea what the Mayo do. Sorry I can’t be of any more help.

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@sambebb

I’m in the UK. I know they do the latest PIPAC in Germany and Spain. I think here too. There may be trials in US and I have no idea what the Mayo do. Sorry I can’t be of any more help.

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No worries. They are doing trials at City of Hope in CA.

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@tobydrake7

Seems relevant to my situation. Do you know if the Mayo Clinic offers this treatment? I am being treated by a local oncology team here, in New Orleans. I am also being tested/treated at MD Anderson. I don’t see this treatment on offer by these institutions. ChatGPT lists a few places; Germany, Japan, etc.
see https://chat.openai.com/share/299f1bc3-12cf-427f-a27e-b00dc714ef86

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@tobydrake7, the team of Dr. Amit Merchea performed the first PIPAC in the USA on Dec 4th, 2019 at Mayo Clinic Jacksonville, FL.

Pressurized intraperitoneal aerosol chemotherapy (PIPAC) is a promising and innovative method for treating peritoneal metastasis.

Here's a clinical trial that Dr. Merchea is conducting.
- A Safety to Evaluate the Safety and Effectiveness of Pressurized Intraperitoneal Aerosolized Chemotherapy in Ovarian, Uterine, Colorectal, and Gastric Cancer Patients https://www.mayo.edu/research/clinical-trials/cls-20517716

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@colleenyoung

@tobydrake7, the team of Dr. Amit Merchea performed the first PIPAC in the USA on Dec 4th, 2019 at Mayo Clinic Jacksonville, FL.

Pressurized intraperitoneal aerosol chemotherapy (PIPAC) is a promising and innovative method for treating peritoneal metastasis.

Here's a clinical trial that Dr. Merchea is conducting.
- A Safety to Evaluate the Safety and Effectiveness of Pressurized Intraperitoneal Aerosolized Chemotherapy in Ovarian, Uterine, Colorectal, and Gastric Cancer Patients https://www.mayo.edu/research/clinical-trials/cls-20517716

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Thank you!

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@colleenyoung

@tobydrake7, the team of Dr. Amit Merchea performed the first PIPAC in the USA on Dec 4th, 2019 at Mayo Clinic Jacksonville, FL.

Pressurized intraperitoneal aerosol chemotherapy (PIPAC) is a promising and innovative method for treating peritoneal metastasis.

Here's a clinical trial that Dr. Merchea is conducting.
- A Safety to Evaluate the Safety and Effectiveness of Pressurized Intraperitoneal Aerosolized Chemotherapy in Ovarian, Uterine, Colorectal, and Gastric Cancer Patients https://www.mayo.edu/research/clinical-trials/cls-20517716

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I filled out the online form to be considered for the clinical trial. Thanks again for this information.

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@tobydrake7

Seems relevant to my situation. Do you know if the Mayo Clinic offers this treatment? I am being treated by a local oncology team here, in New Orleans. I am also being tested/treated at MD Anderson. I don’t see this treatment on offer by these institutions. ChatGPT lists a few places; Germany, Japan, etc.
see https://chat.openai.com/share/299f1bc3-12cf-427f-a27e-b00dc714ef86

Jump to this post

Are you on clinical trial at MD Anderson?

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Not yet. I am doing chemotherapy first to see if that takes care of it. If not, HIPEC or PIPEC may be an option, with either MD Anderson and/or Mayo Clinic. We’ll see.

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Yes within the last month. The biopsy indicate renal cell carcinoma. However, the MRI shows no Tumors.

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@tom0329

Yes within the last month. The biopsy indicate renal cell carcinoma. However, the MRI shows no Tumors.

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Hi @tom0329, where was the biopsy taken from? Did you have a mass or tumor outside of the kidney?

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I've been diagnosed with Cancer unknown primary.
In January my dental hygienist found a small lump, at the time, in my left neck. After CT scans, biopsy it was confirmed carcinoma, highly undifferentiated. Pet scan showed tonsils and back of tongue being lit. Tonsillectomy was performed but negative for cancer. Had neck dissection to remove golf ball sized tumour from my neck. Histology is adenocarcinoma but pathology did not indicate primary.
I just started treatment-30 rounds of radiation and 3 rounds chemo/cisplatin.
My husband had throat cancer (voice box), fall 2022. He had a pet scan 11 months ago that was clean. Thencame thr devastating news. His cancer has returned and spread to both lungs with no option for surgery. We found this out 4 weeks ago. He has chemo/immunotherapy every 3 weeks. We are both going thru treatment.

Seems to me that scans should happen more frequently. In Canada, since Healthcare is free, this was detrimental.

Assume CUP cancers should do pet scans 3 months or 6 months? Anyone know the recommended guidelines? I would pay and travel to states if it means chance of catching it early/ living. My PET was in April.

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