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
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?
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.
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?
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.
So sorry to hear of your sisters illness. I started with lung carcinoid cancer. Had upper lobe of lung removed in 2012. Doctors figured carcinoid was gone and sent me on my way. My pulmonoligist saw me annually to check my lung function and I am on oxygen, but other than that no problem with cancer or so they thought. A PET scan is the only way to really tell what is going on.
My mom is 82. She was just diagnosed with a new cancer unknown primary. She has beat cancer (3) times already. She had breast cancer (once in each breast) the second time was Triple Negative. She tried chemo but stopped after one treatment it made her to sick. After the breast cancer she developed lung cancer (a very tiny tumor) despite being a non-smoker. She had surgery for the lung cancer and all was clear. She did do lumpectomy for both breast cancers and radiation therapy. This has all been since 2015.
She now has a 4.0 cm mass in her para-aortic region. The lymph node/tumor was biopsied and came back as Cancer with unknown primary diagnosis. They suspect metastasis from either the ovary, kidney or peritoneal.
She refuses to do chemotherapy at her age and she has stage 3 kidney disease as well. The oncologist has said it is probably stage 3 or 4. The cancer was poorly differentiated which I understand to be a bad thing. It is better to be well differentiated (please correct me if I'm wrong). Does anyone know how fast these things grow. It is impossible to understand how we are supposed to live with this. Since chemotherapy was the only available option and she declined we don't know if that means she will live 6 months or a few years. The recommendation was to do another scan in a few months to see how things are. She is asymptomatic as of now except for being easily tired and her appetite is not great. She has anemia so we don't know it's the cancer or anemia making her tired.
I'm sorry for writing a book here but I' super frustrated and worried. I'm not ready to lose my mom yet.
@srobinet , my heart really goes out to you. That is an awful lot for your mom and you to go through. I'm not any kind of expert, but, unfortunately, my understanding of "differentiated" is the same as yours - poorly differentiated means the cells look less like the surrounding tissue and so the tumor is probably more aggressive. Living with uncertainty is frustrating, worrying, tiring and just no fun - this I know from my own experience. And I can understand your mom's not wanting to go through chemo. I am supposed to be taking a chemo drug daily for my ET (essential thrombocythemia). But the drug was making me feel worse, not better, and really messing with many aspects of my quality of life. So, I'm taking the risks associated with untreated ET. I've also had several relatives in situations similar to what your mom is in, and they declined chemo also. My only suggestion is to ask for another scan within six to eight weeks, and not "a few months" - eight weeks should be long enough, I think, for doctors to figure out the probable growth rate of your mom's tumor. Not sure if there are any "cancer marker" or other blood tests that could be done, but you might want to press your mom's care team for any such tests, if they will help you find answers to your concerns. Big hugs to you and your mom, and I wish you the best.
My mom is 82. She was just diagnosed with a new cancer unknown primary. She has beat cancer (3) times already. She had breast cancer (once in each breast) the second time was Triple Negative. She tried chemo but stopped after one treatment it made her to sick. After the breast cancer she developed lung cancer (a very tiny tumor) despite being a non-smoker. She had surgery for the lung cancer and all was clear. She did do lumpectomy for both breast cancers and radiation therapy. This has all been since 2015.
She now has a 4.0 cm mass in her para-aortic region. The lymph node/tumor was biopsied and came back as Cancer with unknown primary diagnosis. They suspect metastasis from either the ovary, kidney or peritoneal.
She refuses to do chemotherapy at her age and she has stage 3 kidney disease as well. The oncologist has said it is probably stage 3 or 4. The cancer was poorly differentiated which I understand to be a bad thing. It is better to be well differentiated (please correct me if I'm wrong). Does anyone know how fast these things grow. It is impossible to understand how we are supposed to live with this. Since chemotherapy was the only available option and she declined we don't know if that means she will live 6 months or a few years. The recommendation was to do another scan in a few months to see how things are. She is asymptomatic as of now except for being easily tired and her appetite is not great. She has anemia so we don't know it's the cancer or anemia making her tired.
I'm sorry for writing a book here but I' super frustrated and worried. I'm not ready to lose my mom yet.
Hello @srobinet and welcome to the Cancer support group on Mayo Connect. As @tomlinaz said earlier, my heart goes out to you as well. This is a difficult place for you and your mom. At your mom's age it is understandable that she would not want to go through chemotherapy.
Getting a second opinion from a well-known cancer center is one thought that came to mind. A major cancer center is often located in a multi-disciplinary or research-oriented medical facility like a university medical school or other large medical center like Mayo Clinic.
If your mom is agreeable to getting a second opinion, I'm wondering if there is a major cancer center in your area?
Hello @srobinet and welcome to the Cancer support group on Mayo Connect. As @tomlinaz said earlier, my heart goes out to you as well. This is a difficult place for you and your mom. At your mom's age it is understandable that she would not want to go through chemotherapy.
Getting a second opinion from a well-known cancer center is one thought that came to mind. A major cancer center is often located in a multi-disciplinary or research-oriented medical facility like a university medical school or other large medical center like Mayo Clinic.
If your mom is agreeable to getting a second opinion, I'm wondering if there is a major cancer center in your area?
Thanks for your kind words. Her tumor markers were not all that elevated so they were of no help. She is being seen at the USA Mitchell Cancer Institute out of Mobile, AL. Travel is tiring for her and she would not want to go out of state unless possibly Florida. I really think she has made her peace with this. It's hard to see her not do the things she once did. She gets tired very easily. we are changing her iron vitamins to something stronger in hopes that will help. It is impossible to know what is making her so tired (it's either the anemia or the cancer of a combination of both). Please keep us in your prayers.
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Thanks for sharing your experiences. After all this it is great to hear that you still have your faith.
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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?
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.
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2 ReactionsAre NET Adenocarcinoma? His back biopsy showed Adenocarcinoma. I am not what kind of Pet scan he had. We can check tomorrow at his appointment.
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1 ReactionThat is a good question to ask your husband's doctor, @ford68travel. Will you post an update as you learn more about your husband's treatment?
So sorry to hear of your sisters illness. I started with lung carcinoid cancer. Had upper lobe of lung removed in 2012. Doctors figured carcinoid was gone and sent me on my way. My pulmonoligist saw me annually to check my lung function and I am on oxygen, but other than that no problem with cancer or so they thought. A PET scan is the only way to really tell what is going on.
My mom is 82. She was just diagnosed with a new cancer unknown primary. She has beat cancer (3) times already. She had breast cancer (once in each breast) the second time was Triple Negative. She tried chemo but stopped after one treatment it made her to sick. After the breast cancer she developed lung cancer (a very tiny tumor) despite being a non-smoker. She had surgery for the lung cancer and all was clear. She did do lumpectomy for both breast cancers and radiation therapy. This has all been since 2015.
She now has a 4.0 cm mass in her para-aortic region. The lymph node/tumor was biopsied and came back as Cancer with unknown primary diagnosis. They suspect metastasis from either the ovary, kidney or peritoneal.
She refuses to do chemotherapy at her age and she has stage 3 kidney disease as well. The oncologist has said it is probably stage 3 or 4. The cancer was poorly differentiated which I understand to be a bad thing. It is better to be well differentiated (please correct me if I'm wrong). Does anyone know how fast these things grow. It is impossible to understand how we are supposed to live with this. Since chemotherapy was the only available option and she declined we don't know if that means she will live 6 months or a few years. The recommendation was to do another scan in a few months to see how things are. She is asymptomatic as of now except for being easily tired and her appetite is not great. She has anemia so we don't know it's the cancer or anemia making her tired.
I'm sorry for writing a book here but I' super frustrated and worried. I'm not ready to lose my mom yet.
@srobinet , my heart really goes out to you. That is an awful lot for your mom and you to go through. I'm not any kind of expert, but, unfortunately, my understanding of "differentiated" is the same as yours - poorly differentiated means the cells look less like the surrounding tissue and so the tumor is probably more aggressive. Living with uncertainty is frustrating, worrying, tiring and just no fun - this I know from my own experience. And I can understand your mom's not wanting to go through chemo. I am supposed to be taking a chemo drug daily for my ET (essential thrombocythemia). But the drug was making me feel worse, not better, and really messing with many aspects of my quality of life. So, I'm taking the risks associated with untreated ET. I've also had several relatives in situations similar to what your mom is in, and they declined chemo also. My only suggestion is to ask for another scan within six to eight weeks, and not "a few months" - eight weeks should be long enough, I think, for doctors to figure out the probable growth rate of your mom's tumor. Not sure if there are any "cancer marker" or other blood tests that could be done, but you might want to press your mom's care team for any such tests, if they will help you find answers to your concerns. Big hugs to you and your mom, and I wish you the best.
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1 ReactionHello @srobinet and welcome to the Cancer support group on Mayo Connect. As @tomlinaz said earlier, my heart goes out to you as well. This is a difficult place for you and your mom. At your mom's age it is understandable that she would not want to go through chemotherapy.
Getting a second opinion from a well-known cancer center is one thought that came to mind. A major cancer center is often located in a multi-disciplinary or research-oriented medical facility like a university medical school or other large medical center like Mayo Clinic.
If your mom is agreeable to getting a second opinion, I'm wondering if there is a major cancer center in your area?
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Helpful -
Hug
1 ReactionThanks for your kind words. Her tumor markers were not all that elevated so they were of no help. She is being seen at the USA Mitchell Cancer Institute out of Mobile, AL. Travel is tiring for her and she would not want to go out of state unless possibly Florida. I really think she has made her peace with this. It's hard to see her not do the things she once did. She gets tired very easily. we are changing her iron vitamins to something stronger in hopes that will help. It is impossible to know what is making her so tired (it's either the anemia or the cancer of a combination of both). Please keep us in your prayers.
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Helpful -
Hug
3 Reactions