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?
Lutathera is PRRT. Large cell poorly differentiated NET is not known to have the presence of somatistatins - it was another miracle, along with the HERS2+ discovery from last year. I am sooo happy to have it as an option.
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.
I appreciate the added information about your husband's health issues. You ask an interesting question about Mayo testing the biopsy. The best way to find out if that is possible would be to contact Mayo Clinic through their appointment department. Here is a link that you can use to see about an appointment, http://mayocl.in/1mtmR63.
If you look at all the discussions in the NETs group, you will undoubtedly find others that will inform you of treatment options that others have used. Here is a link to all of the discussions, https://connect.mayoclinic.org/group/neuroendocrine-tumors-nets/
Finding the primary is a problem for some people who have NETs. As you probably already know, NETs can produce very small lesions that are not visible on many of the traditional scans. One of the most effective scans to locate NETs is the 68 Gallium Dotatate PET scan. Here is information about this specific scan for NETs: https://connect.mayoclinic.org/discussion/68ga-dotatate-positron-emission-tomography-pet-now-at-mayo-clinic/
Has your husband had this scan?
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 @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.
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,
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?
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
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!
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?
Connect
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Helpful
Hug
Lutathera is PRRT. Large cell poorly differentiated NET is not known to have the presence of somatistatins - it was another miracle, along with the HERS2+ discovery from last year. I am sooo happy to have it as an option.
-
Like -
Helpful -
Hug
2 ReactionsHello again @ford68travel
I appreciate the added information about your husband's health issues. You ask an interesting question about Mayo testing the biopsy. The best way to find out if that is possible would be to contact Mayo Clinic through their appointment department. Here is a link that you can use to see about an appointment, http://mayocl.in/1mtmR63.
I would also encourage you to post in the NETs discussion group on Connect. One discussion group that might be of interest to you would be the following: https://connect.mayoclinic.org/discussion/net-in-the-spine.
If you look at all the discussions in the NETs group, you will undoubtedly find others that will inform you of treatment options that others have used. Here is a link to all of the discussions, https://connect.mayoclinic.org/group/neuroendocrine-tumors-nets/
Finding the primary is a problem for some people who have NETs. As you probably already know, NETs can produce very small lesions that are not visible on many of the traditional scans. One of the most effective scans to locate NETs is the 68 Gallium Dotatate PET scan. Here is information about this specific scan for NETs:
https://connect.mayoclinic.org/discussion/68ga-dotatate-positron-emission-tomography-pet-now-at-mayo-clinic/
Has your husband had this scan?
Thanks for sharing your experiences. After all this it is great to hear that you still have your faith.
-
Like -
Helpful -
Hug
2 ReactionsHe 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 ReactionHello @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?
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?
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
-
Like -
Helpful -
Hug
4 ReactionsMy 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 ReactionA 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
-
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?