Good morning. I am the Mentor for the Lung Cancer group. I do not have any form of mesothelioma. I have Multifocal Adenocarcinoma a form of NSCLC. Have you been diagnosed with this recently? Do you think that Prolia has caused it?
Good morning. I am the Mentor for the Lung Cancer group. I do not have any form of mesothelioma. I have Multifocal Adenocarcinoma a form of NSCLC. Have you been diagnosed with this recently? Do you think that Prolia has caused it?
There are 4 types of malignant mesothelioma:
– Pleural Mesothelioma: found in the chest cavity, on the surface of the lung and on the diaphragm,
– Peritoneal Mesothelioma: found in the abdomen on the surface of the omentum and visceral organs,
– Pericardial Mesothelioma: growing on the exterior surface of the pericardium, or lining of the heart
– Testicular Mesothelioma: noted as a thickening of the ducts and glands in the testes.
Do you know what type of mesothelioma your friend has?
Lisa, whether to have or not have chemotherapy is a difficult decision when standard treatment can only offer minimal extension of life. That is when quality and quantity must be aligned with the desires of the patient and the family. Sometimes there is a significant family event in the future like the marriage of a child or waiting for family members to return from abroad for which treatment can help add time. But the side effects can certainly affect quality of life to such a degree that some may opt out. That's what my dad did with treatment for colon cancer. He started on treatment, but the effects were not how he wanted to live his last months. The treatment didn't hasten his death, but he was much more comfortable with his decision to stop treatment.
Stimme, there are no natural protocols or integrative medicine that will cure mesothelioma. However there are some that can help ease symptoms.
Here's additional information: https://www.asbestos.com/treatment/alternative/ as well as the resource that Lisa recommended:
– Mesothelioma Applied Research Foundation https://www.curemeso.org/
He has biphasic pleural mesothelioma and is receiving immunotherapy and had a PleurX chest drain for a pleural effusion that has resolved. So far there are no side effects. The only issues are due to the mesothelioma.
I am not looking for alternative therapies. The research does not support anything other than integrative such as meditation, massage, and aroma therapy possibly. We are interested in what other patients have experienced with immunotherapy, disease progression with immunotherapy, and symptom management specifically severe cough. He is receiving excellent care at Mayo, but it would be nice to connect with other mesothelioma patients.
I am not looking for alternative therapies. The research does not support anything other than integrative such as meditation, massage, and aroma therapy possibly. We are interested in what other patients have experienced with immunotherapy, disease progression with immunotherapy, and symptom management specifically severe cough. He is receiving excellent care at Mayo, but it would be nice to connect with other mesothelioma patients.
Have your doctors talked to you about the clinical trial being conducted at Mayo for mesothelioma that includes stereotactic body radiation therapy (SBRT) with Immunotherapy? See more info here:
- SBRT with Immunotherapy for Mesothelioma https://www.mayo.edu/research/clinical-trials/cls-20514654
What treatments has he had? It sounds like a severe cough is a concerning side effect at the moment. How is it being managed?
Surgery wasn’t an option due to the pervasive nature when found. Radiation trial was discussed for a future date possibly. He has only had two immunotherapy treatments nivolumab and ipilimumab. The pleural effusion is resolved as I stated; however. I would like to understand others experience with immunotherapy. He has a cough associated with the disease that can be controlled, but also has a very violent product cough episodically that is very difficult to control. He has no pain but does have fatigue and weight loss associated with the disease.
Surgery wasn’t an option due to the pervasive nature when found. Radiation trial was discussed for a future date possibly. He has only had two immunotherapy treatments nivolumab and ipilimumab. The pleural effusion is resolved as I stated; however. I would like to understand others experience with immunotherapy. He has a cough associated with the disease that can be controlled, but also has a very violent product cough episodically that is very difficult to control. He has no pain but does have fatigue and weight loss associated with the disease.
There are a few discussions in the Lung Cancer group talking about immunotherapy. While not specific to mesothelioma, you may appreciate connecting with members living with lung cancer and other caregivers like @ta52@dutchw@cindylb@bentrivercarla@schmeeckle64@lisakuehl in these discussions:
Connect
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Good morning. I am the Mentor for the Lung Cancer group. I do not have any form of mesothelioma. I have Multifocal Adenocarcinoma a form of NSCLC. Have you been diagnosed with this recently? Do you think that Prolia has caused it?
No and no prolia did not cause mesothelioma. Asbestos exposure 50 years ago did when my husband was exposed.
I’ll leave the group.
Oh, no please don't leave the group! As I said I don't have cancer caused by asbestos. I thought that perhaps you were thinking otherwise.
Maybe someone else can answer your question here?
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1 ReactionSo far there has been no information on his form of cancer. I will wait to see.
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1 ReactionHere is a link to a post that Colleen posted
@stimme, I moved your message to the Lung Cancer group (https://connect.mayoclinic.org/group/lung-cancer/) so that you can connect with other members with experience with pleural mesothelioma, like @lisakuehl and @richm.
There are 4 types of malignant mesothelioma:
– Pleural Mesothelioma: found in the chest cavity, on the surface of the lung and on the diaphragm,
– Peritoneal Mesothelioma: found in the abdomen on the surface of the omentum and visceral organs,
– Pericardial Mesothelioma: growing on the exterior surface of the pericardium, or lining of the heart
– Testicular Mesothelioma: noted as a thickening of the ducts and glands in the testes.
Do you know what type of mesothelioma your friend has?
You might also be interested in this discussion:
– SMART protocol for mesothelioma https://connect.mayoclinic.org/discussion/smart-protocol-for-mesothelioma/
Lisa, whether to have or not have chemotherapy is a difficult decision when standard treatment can only offer minimal extension of life. That is when quality and quantity must be aligned with the desires of the patient and the family. Sometimes there is a significant family event in the future like the marriage of a child or waiting for family members to return from abroad for which treatment can help add time. But the side effects can certainly affect quality of life to such a degree that some may opt out. That's what my dad did with treatment for colon cancer. He started on treatment, but the effects were not how he wanted to live his last months. The treatment didn't hasten his death, but he was much more comfortable with his decision to stop treatment.
Stimme, there are no natural protocols or integrative medicine that will cure mesothelioma. However there are some that can help ease symptoms.
Here's additional information: https://www.asbestos.com/treatment/alternative/ as well as the resource that Lisa recommended:
– Mesothelioma Applied Research Foundation https://www.curemeso.org/
Is this what you are looking for?
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1 ReactionHe has biphasic pleural mesothelioma and is receiving immunotherapy and had a PleurX chest drain for a pleural effusion that has resolved. So far there are no side effects. The only issues are due to the mesothelioma.
I am not looking for alternative therapies. The research does not support anything other than integrative such as meditation, massage, and aroma therapy possibly. We are interested in what other patients have experienced with immunotherapy, disease progression with immunotherapy, and symptom management specifically severe cough. He is receiving excellent care at Mayo, but it would be nice to connect with other mesothelioma patients.
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Hug
1 Reaction@texasmimi, I'd like to add my welcome. So glad to hear that he is getting care at Mayo Clinic.
You might be interested in this discussion with @richm @natalietenzin and others
SMART protocol for mesothelioma https://connect.mayoclinic.org/discussion/smart-protocol-for-mesothelioma/
Have your doctors talked to you about the clinical trial being conducted at Mayo for mesothelioma that includes stereotactic body radiation therapy (SBRT) with Immunotherapy? See more info here:
- SBRT with Immunotherapy for Mesothelioma https://www.mayo.edu/research/clinical-trials/cls-20514654
What treatments has he had? It sounds like a severe cough is a concerning side effect at the moment. How is it being managed?
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Like -
Helpful -
Hug
1 ReactionSurgery wasn’t an option due to the pervasive nature when found. Radiation trial was discussed for a future date possibly. He has only had two immunotherapy treatments nivolumab and ipilimumab. The pleural effusion is resolved as I stated; however. I would like to understand others experience with immunotherapy. He has a cough associated with the disease that can be controlled, but also has a very violent product cough episodically that is very difficult to control. He has no pain but does have fatigue and weight loss associated with the disease.
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Like -
Helpful -
Hug
1 ReactionThere are a few discussions in the Lung Cancer group talking about immunotherapy. While not specific to mesothelioma, you may appreciate connecting with members living with lung cancer and other caregivers like @ta52 @dutchw @cindylb @bentrivercarla @schmeeckle64 @lisakuehl in these discussions:
- Started immunotherapy maintenance: What side effects can I expect? https://connect.mayoclinic.org/discussion/keytrudaalimta-maintenance-side-effect/
- Going Beyond Standard Immunotherapy https://connect.mayoclinic.org/discussion/going-beyond-standard-immunotherapy/
- Has anyone has the Opdivo (nivolumab) / Yervoy (ipilimumab) protocol?https://connect.mayoclinic.org/discussion/opdivo-yervoy-combination/
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