Anyone have cancer with unknown primary?

Posted by rita8898 @rita8898, May 20, 2019

Anyone suffering from cancer with unknown primary?

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@gisellef

Hi:
You could try grating fresh turmeric root into food. It helped a family member with ovarian recurrence for a couple of weeks, enough to get her through the time between diagnosis and treatment.

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Thanks I will definitely buy some and get my parents to put it with their stir fry’s

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@dkoontz

I had my scan that detected the enlarged lymph nodes beginning of October 2022. I had over a dozen biopsies, along with many scan and scopes for several months. they didn't start my treatments until January 23, 2023, (almost 4 months). They also surgically removed a lymph node and sent it to a company call Tempus labs with the hope that they would help identify. it came back as 70% cervical. Everyone thought it was strong enough result to just treat for that.
I have finished my treatments and had my first scan with was clear. Do you know what the cell type is. In my case this help them go down paths of where that cell type can only be. Mine again was Squamous and would only be found in throat, cervix and anal/rectal. that provided areas to look and direction. To me that would be the biggest question.

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I don’t know but hoping to find out more information at his next specialist appointment.
I’m so happy that your results came back all clear that’s fantastic.

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@mpuap

Food suggestions. Blueberries for pterostilbene, watermelon and tomatoes for Lycopene, broccoli sprouts or lightly steamed broccoli for sulfurophane, apples with peal for Ursolic acid, fermented or cultured food like yogurt, kombucha etc for good gut microbes. Look into these online. Research is often tumor specific and academic only.

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Thanks will add them to my list too. I read walnuts and almonds are good options too. Next up is to find good recipes.

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@gisellef

Hi:
You could try grating fresh turmeric root into food. It helped a family member with ovarian recurrence for a couple of weeks, enough to get her through the time between diagnosis and treatment.

Jump to this post

Thanks I will put it on the shopping list. Anything else you can think of would be great too.

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Food suggestions. Blueberries for pterostilbene, watermelon and tomatoes for Lycopene, broccoli sprouts or lightly steamed broccoli for sulfurophane, apples with peal for Ursolic acid, fermented or cultured food like yogurt, kombucha etc for good gut microbes. Look into these online. Research is often tumor specific and academic only.

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@mattydlb

Sounds like you have found the best treatment plan for your recovery.
How many tests and how long all up do you think it took to find the right outcome?
I still think he needs more tests to hopefully find the primary source. Think next one he needs is a colonoscopy.
He has his second opinion specialist appointment on Friday.
Can you think of any questions that may need to be asked?
How long have you been having treatment for?
Thank you for your help and appreciate all your advice.

Jump to this post

I had my scan that detected the enlarged lymph nodes beginning of October 2022. I had over a dozen biopsies, along with many scan and scopes for several months. they didn't start my treatments until January 23, 2023, (almost 4 months). They also surgically removed a lymph node and sent it to a company call Tempus labs with the hope that they would help identify. it came back as 70% cervical. Everyone thought it was strong enough result to just treat for that.
I have finished my treatments and had my first scan with was clear. Do you know what the cell type is. In my case this help them go down paths of where that cell type can only be. Mine again was Squamous and would only be found in throat, cervix and anal/rectal. that provided areas to look and direction. To me that would be the biggest question.

REPLY
@mattydlb

Are there any cancer fighting foods to possibly help slow the development that any of you recommend to add to his diet that may have helped any of you?

Jump to this post

Hi:
You could try grating fresh turmeric root into food. It helped a family member with ovarian recurrence for a couple of weeks, enough to get her through the time between diagnosis and treatment.

REPLY

Are there any cancer fighting foods to possibly help slow the development that any of you recommend to add to his diet that may have helped any of you?

REPLY
@markymarkfl

Grail's "Galleri MCED" (Multi-cancer Early Detection) panel is a simple blood test you can get drawn for a self-pay of approximately $1000 US. It's not FDA approved for official diagnostic use, but does have their approval as a "Lab Developed Test." You can call Grail, speak with one of their physicians/reps, and likely get the test approved, without waiting for local docs or what your primary oncologist thinks.

They will send you a kit in the mail (US only?) which you can take to a local doctor/lab for the blood draw and return shipping to Grail, with results in about 2 weeks.

Although it completely failed to detect my pancreatic cancer recurrence before other methods (rising CA19-9 and MRI), I am only a sample of one, and they claim some reasonably good statistics for pinpointing the likely origin of cancer cells as well as their presence. Scroll down this link to the section about "88% Cancer Signal Origin Accuracy" at https://www.galleri.com/hcp/galleri-test-performance

There's a little more discussion in this Mayo Connect thread:
https://connect.mayoclinic.org/discussion/galleri-test/
Despite its imperfections, if I even suspected a possible cancer, I would consider this test. If I had evidence of cancer with unknown origin, and doctors in "wait-and-see" mode or having other difficulties identifying the origin, I would be first in line to get the test done and hopefully help them along.

With the caveats above, if anyone has a chance to use this test, please post replies in the forums here!

Thanks and best wishes.

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Interesting information, @markymarkfl.

REPLY

Grail's "Galleri MCED" (Multi-cancer Early Detection) panel is a simple blood test you can get drawn for a self-pay of approximately $1000 US. It's not FDA approved for official diagnostic use, but does have their approval as a "Lab Developed Test." You can call Grail, speak with one of their physicians/reps, and likely get the test approved, without waiting for local docs or what your primary oncologist thinks.

They will send you a kit in the mail (US only?) which you can take to a local doctor/lab for the blood draw and return shipping to Grail, with results in about 2 weeks.

Although it completely failed to detect my pancreatic cancer recurrence before other methods (rising CA19-9 and MRI), I am only a sample of one, and they claim some reasonably good statistics for pinpointing the likely origin of cancer cells as well as their presence. Scroll down this link to the section about "88% Cancer Signal Origin Accuracy" at https://www.galleri.com/hcp/galleri-test-performance

There's a little more discussion in this Mayo Connect thread:
https://connect.mayoclinic.org/discussion/galleri-test/
Despite its imperfections, if I even suspected a possible cancer, I would consider this test. If I had evidence of cancer with unknown origin, and doctors in "wait-and-see" mode or having other difficulties identifying the origin, I would be first in line to get the test done and hopefully help them along.

With the caveats above, if anyone has a chance to use this test, please post replies in the forums here!

Thanks and best wishes.

REPLY
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