My sister was just diagnosed with carcinoma of unknown primary. She started having symptoms the day after her 35th birthday. It took a month and a half to figure out what was going on (6 ER visits, primary care & pulmonologist). One ER told her she had gallstones, I took her to another the next day because I thought if she’s been in that much pain and sick for that long, her gallbladder should need to be removed quickly. Instead we were told she has a mass on her lung that was very concerning and could be cancer. Two different hospitals have tried to determine the primary with no luck so far. As of right now we know she has a spot on her lung, adrenal gland, thyroid, neck, spine, rib cage and hip bone. She had 2 weeks of radiation to try and help with some pain. She starts chemo Monday. We are also waiting for results from a Tempus test. I’ve been in contact with City of Hope (Cancer Centers of America) and we should be making a trip to them within the next two weeks.
I do as well. Diagnosed March 2021 with Neuroendocrine cancer of unknown origin, bone, brain and lung metastases. Several wonky characteristics make my cancer a conundrum , however, I get wonderful treatment at Mayo in Rochester, MN and Fairmont, MN. I have been through many therapies, each with some success as my wonderful docs continue to research. I am in good hands.
I do as well. Diagnosed March 2021 with Neuroendocrine cancer of unknown origin, bone, brain and lung metastases. Several wonky characteristics make my cancer a conundrum , however, I get wonderful treatment at Mayo in Rochester, MN and Fairmont, MN. I have been through many therapies, each with some success as my wonderful docs continue to research. I am in good hands.
As someone with a history of NETs (three surgeries for NETs in the duodenal bulb), I would like to invite you to the NETs discussion on Connect. Here is a link to the many discussions you will find there.
--Neuroendocrine Tumors https://connect.mayoclinic.org/group/neuroendocrine-tumors-nets/
You might be especially interested in this conversation,
--Lost with No Confirmation https://connect.mayoclinic.org/discussion/lost-with-no-confirmation/
You mention many areas where NETs have been found. How are you feeling? Would you share what treatments you have had?
I do as well. Diagnosed March 2021 with Neuroendocrine cancer of unknown origin, bone, brain and lung metastases. Several wonky characteristics make my cancer a conundrum , however, I get wonderful treatment at Mayo in Rochester, MN and Fairmont, MN. I have been through many therapies, each with some success as my wonderful docs continue to research. I am in good hands.
My husband had been diagnosed with metastasized cancer on spine, hip, ribs, and shoulder. After biopsi, it was determined to be Adenocarcinoma type. That was in March. Since then, he has had a pet scan, endoscopy of
complete GI track, endoscope of neck/throat. Now they are getting ready to say it is CUP, and start some type
of "shotgun treatment". He was walking 5 miles a day back in November, but is tired and week. He only walks
one mile a day now, and can a little work for short periods. God has given him extra doses of patience
(not of his own) . He is going to MD Anderson in Gilbert Arizona. Any input from those who have experienced this? Thanks!
As someone with a history of NETs (three surgeries for NETs in the duodenal bulb), I would like to invite you to the NETs discussion on Connect. Here is a link to the many discussions you will find there.
--Neuroendocrine Tumors https://connect.mayoclinic.org/group/neuroendocrine-tumors-nets/
You might be especially interested in this conversation,
--Lost with No Confirmation https://connect.mayoclinic.org/discussion/lost-with-no-confirmation/
You mention many areas where NETs have been found. How are you feeling? Would you share what treatments you have had?
Hello,
I feel great! I have never had symptoms of my cancer. I workout up to 5 times weekly, pushing myself to remain strong. I eat a healthy diet including 3 fruited and 3 vegetables per day, and limit my sugar intake.
I started with carboplatin, Etoposide, and Atezomizalab for 4 months. genetic testing showed my cancer positive for the HERS2 receptor- apparently a first in large cell poorly differentiated NET. So I started Enhertu. This drug cleared my body and bones in 4 cycles! I remained on it another 6 cycles, then developed lung inflammation. Doctors took me off the drug, I missed a treatment cycle, then resumed with Traztuzamab for a short time. Scans revealed progression again. I underwent radiation of a few areas, then whole brain radiation therapy in May 2022. I began Traztuzamab/carboplatin/Capecitabine, had to drop back to a lower dose due to hand and foot syndrome and GI distress. Not fun! My hands are still recovering from the Capecitabine. When this treatment also failed, I had more radiation and started IpiNivo (Ipilumimab/Nivolumab) in October 22. In January this year doctors decided to rechallenge with Enhertu at a lower dose, which provided some regression but still progression in other areas. A new genetic test and a look back at my first test showed the presence of EGFR, so I started Tagrisso May 19. My next scan is the end of June.
In April I had a PET CT to see if my cancer may have somatistatins, and I do - another miracle in this mixed up cancer. This means Lutathera is an option for me.
I have learned that I must persevere through each of these. I take one therapy as long as I can knowing that gifted scientists and docs develop new treatments all along.
I have hard days, no doubt. 8 treatments in 27 months has been hard to reconcile. So I surrender to my faith.
I offer encouragement to everyone! Elli
Hello,
I feel great! I have never had symptoms of my cancer. I workout up to 5 times weekly, pushing myself to remain strong. I eat a healthy diet including 3 fruited and 3 vegetables per day, and limit my sugar intake.
I started with carboplatin, Etoposide, and Atezomizalab for 4 months. genetic testing showed my cancer positive for the HERS2 receptor- apparently a first in large cell poorly differentiated NET. So I started Enhertu. This drug cleared my body and bones in 4 cycles! I remained on it another 6 cycles, then developed lung inflammation. Doctors took me off the drug, I missed a treatment cycle, then resumed with Traztuzamab for a short time. Scans revealed progression again. I underwent radiation of a few areas, then whole brain radiation therapy in May 2022. I began Traztuzamab/carboplatin/Capecitabine, had to drop back to a lower dose due to hand and foot syndrome and GI distress. Not fun! My hands are still recovering from the Capecitabine. When this treatment also failed, I had more radiation and started IpiNivo (Ipilumimab/Nivolumab) in October 22. In January this year doctors decided to rechallenge with Enhertu at a lower dose, which provided some regression but still progression in other areas. A new genetic test and a look back at my first test showed the presence of EGFR, so I started Tagrisso May 19. My next scan is the end of June.
In April I had a PET CT to see if my cancer may have somatistatins, and I do - another miracle in this mixed up cancer. This means Lutathera is an option for me.
I have learned that I must persevere through each of these. I take one therapy as long as I can knowing that gifted scientists and docs develop new treatments all along.
I have hard days, no doubt. 8 treatments in 27 months has been hard to reconcile. So I surrender to my faith.
I offer encouragement to everyone! Elli
I appreciate your post, @elliwiemers. I do admire your persistence and healthy lifestyle as you have dealt with some difficult health issues. Like you, I have had three surgeries for NETs, but have never had any symptoms. That seems to be true for many of us with NETs.
As you have not mentioned PRRT, I'm guessing that was not a recommended treatment for your type of NETs?
My husband had been diagnosed with metastasized cancer on spine, hip, ribs, and shoulder. After biopsi, it was determined to be Adenocarcinoma type. That was in March. Since then, he has had a pet scan, endoscopy of
complete GI track, endoscope of neck/throat. Now they are getting ready to say it is CUP, and start some type
of "shotgun treatment". He was walking 5 miles a day back in November, but is tired and week. He only walks
one mile a day now, and can a little work for short periods. God has given him extra doses of patience
(not of his own) . He is going to MD Anderson in Gilbert Arizona. Any input from those who have experienced this? Thanks!
Hello @ford68travel and welcome to Mayo Connect. It does sound like you and your husband have had quite a journey as he is dealing with some serious health issues.
If you are comfortable sharing more, what type of symptoms was he experiencing when the metastasized cancer was diagnosed?
Hello @ford68travel and welcome to Mayo Connect. It does sound like you and your husband have had quite a journey as he is dealing with some serious health issues.
If you are comfortable sharing more, what type of symptoms was he experiencing when the metastasized cancer was diagnosed?
He was having some back pain. He was feeling weak and tired. They did a simple x-ray, and saw several spots. The next day he had a cat scan. Then a bone scan and on April 17th the Pet scan. Wondering if Mayo can test the biopsy further, to see if it reveals any info on the primary.
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My sister was just diagnosed with carcinoma of unknown primary. She started having symptoms the day after her 35th birthday. It took a month and a half to figure out what was going on (6 ER visits, primary care & pulmonologist). One ER told her she had gallstones, I took her to another the next day because I thought if she’s been in that much pain and sick for that long, her gallbladder should need to be removed quickly. Instead we were told she has a mass on her lung that was very concerning and could be cancer. Two different hospitals have tried to determine the primary with no luck so far. As of right now we know she has a spot on her lung, adrenal gland, thyroid, neck, spine, rib cage and hip bone. She had 2 weeks of radiation to try and help with some pain. She starts chemo Monday. We are also waiting for results from a Tempus test. I’ve been in contact with City of Hope (Cancer Centers of America) and we should be making a trip to them within the next two weeks.
@holdingon2abba, what treatment options were available for you?
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1 ReactionI do as well. Diagnosed March 2021 with Neuroendocrine cancer of unknown origin, bone, brain and lung metastases. Several wonky characteristics make my cancer a conundrum , however, I get wonderful treatment at Mayo in Rochester, MN and Fairmont, MN. I have been through many therapies, each with some success as my wonderful docs continue to research. I am in good hands.
-
Like -
Helpful -
Hug
1 ReactionHello @elliwiemers,
As someone with a history of NETs (three surgeries for NETs in the duodenal bulb), I would like to invite you to the NETs discussion on Connect. Here is a link to the many discussions you will find there.
--Neuroendocrine Tumors
https://connect.mayoclinic.org/group/neuroendocrine-tumors-nets/
You might be especially interested in this conversation,
--Lost with No Confirmation
https://connect.mayoclinic.org/discussion/lost-with-no-confirmation/
You mention many areas where NETs have been found. How are you feeling? Would you share what treatments you have had?
A fellow cancer patient. I have neuroendocrine cancer. Diagnosed 3 months ago, but like most it took years to put a name to all my symptoms
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Hug
1 ReactionMy husband had been diagnosed with metastasized cancer on spine, hip, ribs, and shoulder. After biopsi, it was determined to be Adenocarcinoma type. That was in March. Since then, he has had a pet scan, endoscopy of
complete GI track, endoscope of neck/throat. Now they are getting ready to say it is CUP, and start some type
of "shotgun treatment". He was walking 5 miles a day back in November, but is tired and week. He only walks
one mile a day now, and can a little work for short periods. God has given him extra doses of patience
(not of his own) . He is going to MD Anderson in Gilbert Arizona. Any input from those who have experienced this? Thanks!
-
Like -
Helpful -
Hug
1 ReactionHello,
I feel great! I have never had symptoms of my cancer. I workout up to 5 times weekly, pushing myself to remain strong. I eat a healthy diet including 3 fruited and 3 vegetables per day, and limit my sugar intake.
I started with carboplatin, Etoposide, and Atezomizalab for 4 months. genetic testing showed my cancer positive for the HERS2 receptor- apparently a first in large cell poorly differentiated NET. So I started Enhertu. This drug cleared my body and bones in 4 cycles! I remained on it another 6 cycles, then developed lung inflammation. Doctors took me off the drug, I missed a treatment cycle, then resumed with Traztuzamab for a short time. Scans revealed progression again. I underwent radiation of a few areas, then whole brain radiation therapy in May 2022. I began Traztuzamab/carboplatin/Capecitabine, had to drop back to a lower dose due to hand and foot syndrome and GI distress. Not fun! My hands are still recovering from the Capecitabine. When this treatment also failed, I had more radiation and started IpiNivo (Ipilumimab/Nivolumab) in October 22. In January this year doctors decided to rechallenge with Enhertu at a lower dose, which provided some regression but still progression in other areas. A new genetic test and a look back at my first test showed the presence of EGFR, so I started Tagrisso May 19. My next scan is the end of June.
In April I had a PET CT to see if my cancer may have somatistatins, and I do - another miracle in this mixed up cancer. This means Lutathera is an option for me.
I have learned that I must persevere through each of these. I take one therapy as long as I can knowing that gifted scientists and docs develop new treatments all along.
I have hard days, no doubt. 8 treatments in 27 months has been hard to reconcile. So I surrender to my faith.
I offer encouragement to everyone! Elli
-
Like -
Helpful -
Hug
4 ReactionsI appreciate your post, @elliwiemers. I do admire your persistence and healthy lifestyle as you have dealt with some difficult health issues. Like you, I have had three surgeries for NETs, but have never had any symptoms. That seems to be true for many of us with NETs.
As you have not mentioned PRRT, I'm guessing that was not a recommended treatment for your type of NETs?
Hello @ford68travel and welcome to Mayo Connect. It does sound like you and your husband have had quite a journey as he is dealing with some serious health issues.
If you are comfortable sharing more, what type of symptoms was he experiencing when the metastasized cancer was diagnosed?
He was having some back pain. He was feeling weak and tired. They did a simple x-ray, and saw several spots. The next day he had a cat scan. Then a bone scan and on April 17th the Pet scan. Wondering if Mayo can test the biopsy further, to see if it reveals any info on the primary.
-
Like -
Helpful -
Hug
1 Reaction