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.

@pacifcgirl60

My 61-year-old husband was diagnosed with carcinoma of unknow primary. When the enlarged lymph node was detected, it was determined due to the location near the aorta, they could not aspirate it to test, so they did a surgery. They could not remove the lymph node as "everything came with it", so they took a cutting and sent it for testing. After 3 months, they came back with carcinoma of unknown primary (CUP). He had one round of chemo and immunotherapy, but it made him very sick, and he opted not to continue. At our last meeting with the oncologist, he said the prognosis is terminal with 6 - 9 months. I don't know what to expect or signs to look for as the cancer progresses.
Has anyone gone through this? Has anyone tried ivermectin? I've been reading about this.

Thanks,

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@pacifcgirl60, there's a lot of information as well as misinformation circulating about ivermectin and its use as a treatment for cancer. It does not clear or cure cancer.

Ivermectin is used to treat river blindness (onchocerciasis), intestinal infection from threadworms (strongyloidiasis), and other kinds of worm infections. Ivermectin is an anthelmintic. It works by interfering with the nerve and muscle functions of worms, by paralyzing and killing them. (https://www.mayoclinic.org/drugs-supplements/ivermectin-oral-route/description/drg-20064397)

Researchers are studying Ivermectin to see if it may be used as an anti-cancer drug and early studies show promise. Please note that this research is in the early stages (mice studies) and has not yet been tested in human trials. Ivermectin is not a proven standard treatment for cancer.
Ivermectin and other dewormers (anthelmintics) like fenbendazole can cause irreparable liver damage.
- Liver damage from Fenbendazole https://pubmed.ncbi.nlm.nih.gov/38706451/

Important
It is NOT safe to take ivermectin used in veterinary medicine. Please talk to your doctor before taking any over-the-counter medications or supplements that claim to fight or cure cancer.

Here's a clear and well-written article about repurposed drugs being researched for cancer.

- Separating fact from fiction: repurposed drugs in cancer treatment https://www.anticancerfund.org/en/blog/separating-fact-fiction-repurposed-drugs-cancer-treatment

It must be so hard to see your husband so sick with the treatments that are meant to treat him. While it is understandable that he has chosen to stop chemo and immunotherapy, you don't want to lose him so soon. We face a similar situation with my dad. I'm sure you have many questions. How are YOU doing? How are you feeling about all the decisions?

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My 61-year-old husband was diagnosed with carcinoma of unknow primary. When the enlarged lymph node was detected, it was determined due to the location near the aorta, they could not aspirate it to test, so they did a surgery. They could not remove the lymph node as "everything came with it", so they took a cutting and sent it for testing. After 3 months, they came back with carcinoma of unknown primary (CUP). He had one round of chemo and immunotherapy, but it made him very sick, and he opted not to continue. At our last meeting with the oncologist, he said the prognosis is terminal with 6 - 9 months. I don't know what to expect or signs to look for as the cancer progresses.
Has anyone gone through this? Has anyone tried ivermectin? I've been reading about this.

Thanks,

REPLY
@amyb5

While that is true most often, my tumor biopsy came back as “unspecified”. It was evaluated by 3 different labs/pathologists. Until the next ca reoccurred, when the tumor was the same makeup, but the cells made more sense in that area, they couldn’t determine the primary. They took a systemic treatment approach; treating the organ & affected area.

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Thanks for the info. That must be so very frustrating.

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@californiazebra

@amdabrock1
I’m trying to understand the story. It seems if they’ve done a biopsy they would know the type of cancer. If they didn’t biopsy, how did they determine it’s cancer and not something benign? Or did they do a biopsy and it’s inconclusive as to type?What did scans show? Which areas are they planning to radiate? Maybe for radiation they don’t need to know what type of cancer??? Are there more case details you can share? It feels like we’re coming in at the end of the story.

I remember when they thought my brother had bone cancer because the issues were in his pelvis and spine, but after spinal tumors were removed and biopsied, they learned it was metastatic lung cancer. They then found two tumors in his lungs but he never had any respiratory symptoms. That’s when they started chemo and radiation. He was 45 and never smoked so we were all shocked. Point being it’s hard to know where the primary is without a biopsy.

Jump to this post

While that is true most often, my tumor biopsy came back as “unspecified”. It was evaluated by 3 different labs/pathologists. Until the next ca reoccurred, when the tumor was the same makeup, but the cells made more sense in that area, they couldn’t determine the primary. They took a systemic treatment approach; treating the organ & affected area.

REPLY
@californiazebra

Glad they did a biopsy. I’m not familiar with those terms. Sorry to hear about the PET scan results. I’m glad they believe the genetic testing will reveal the type of cancer. The waiting is always so hard. Hang in there. Prayers for you.

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Hello, It´s tumor markers.

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@crusoe89

I went to emergency in November 2023 and did the biopsy in December. And then was diagnosed with CUP in December 2023. Although they tried ultrasound, MRI and PET scan after, no primary can be found still and they told me no pint to find that. I did the chemo and immunotherapy right away. After 16 chemos, I was on immunotherapy for around 6 months. Now they asked me to start new chemo again because the lymph nodes are getting bigger again. The swollen lymph nodes are several areas. This is very frustrating since no targeted medicine could be taken and stage 4 is not curable too. I would like to hear more suggestions if you know of anybody having similar situations.

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@crusoe89, did you decide to start the new chemo? Are you being seen at a large cancer center?

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@amdabrock1

The biopsy just says " positive for keratin and CAM 5.2, negative for LCA, SOX10, TTF-1, p40, CD68, S100 and HMB45. The carcinoma is described as poorly differentiated. The pet scan revealed 8 places around my body where cancer is present. Oncology says they have to do genetic testing to find out what it is and where it started if possible.

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Glad they did a biopsy. I’m not familiar with those terms. Sorry to hear about the PET scan results. I’m glad they believe the genetic testing will reveal the type of cancer. The waiting is always so hard. Hang in there. Prayers for you.

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@californiazebra

@amdabrock1
I’m trying to understand the story. It seems if they’ve done a biopsy they would know the type of cancer. If they didn’t biopsy, how did they determine it’s cancer and not something benign? Or did they do a biopsy and it’s inconclusive as to type?What did scans show? Which areas are they planning to radiate? Maybe for radiation they don’t need to know what type of cancer??? Are there more case details you can share? It feels like we’re coming in at the end of the story.

I remember when they thought my brother had bone cancer because the issues were in his pelvis and spine, but after spinal tumors were removed and biopsied, they learned it was metastatic lung cancer. They then found two tumors in his lungs but he never had any respiratory symptoms. That’s when they started chemo and radiation. He was 45 and never smoked so we were all shocked. Point being it’s hard to know where the primary is without a biopsy.

Jump to this post

The biopsy just says " positive for keratin and CAM 5.2, negative for LCA, SOX10, TTF-1, p40, CD68, S100 and HMB45. The carcinoma is described as poorly differentiated. The pet scan revealed 8 places around my body where cancer is present. Oncology says they have to do genetic testing to find out what it is and where it started if possible.

REPLY
@amdabrock1

I have three main areas of more than casual pain. the largest of them is the right hip. Next is on the right side of my neck. and finally, the one that hurts when I walk, the left hip.

Jump to this post

@amdabrock1
I’m trying to understand the story. It seems if they’ve done a biopsy they would know the type of cancer. If they didn’t biopsy, how did they determine it’s cancer and not something benign? Or did they do a biopsy and it’s inconclusive as to type?What did scans show? Which areas are they planning to radiate? Maybe for radiation they don’t need to know what type of cancer??? Are there more case details you can share? It feels like we’re coming in at the end of the story.

I remember when they thought my brother had bone cancer because the issues were in his pelvis and spine, but after spinal tumors were removed and biopsied, they learned it was metastatic lung cancer. They then found two tumors in his lungs but he never had any respiratory symptoms. That’s when they started chemo and radiation. He was 45 and never smoked so we were all shocked. Point being it’s hard to know where the primary is without a biopsy.

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@colleenyoung

@amdabrock1, I moved your question about cancer of unknown primary, treatments and how successful are they to this existing discussion:

- Anyone have cancer with unknown primary? https://connect.mayoclinic.org/discussion/rennie/

I did this so you can click the link to read previous posts and connect with members like @maryannecrawford @mbkcanada @amyb5 @rita8898 @crusoe89 @umeshghimire @cindylb and many others who have experience wth cancers with unknown primaries.

Genetic testing will hopefully give your oncology team more information to choose treatment that will be the most effective.

What part of your body will they start radiation treatment on?

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I have three main areas of more than casual pain. the largest of them is the right hip. Next is on the right side of my neck. and finally, the one that hurts when I walk, the left hip.

REPLY
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