Good morning, @kr60cup I just noticed that you’ve been a member for almost 6 years but this is your first time with a reply! So let me officially welcome you to the forum!
You were diagnosed with cancer of unknown primary 7 years ago this month. I’m curious to know if the primary source ever discovered? Have you been treated and now in remission?
The primary has never been found. I was treated 2017-2019 with surgery, radiation, and immunotherapy. I have been scanned and tested on a regular basis. The last 3 years I have just had annual test because I had no active cancer. This spring(2024) my brain MRI showed 2 new spots. Those were treated with radiation. Biopsy and surgery were not an option. I also had 2 basil skin cancers and those were treated. I now have cancer in lymph node below esophagus. A biopsy was taken but still unknown cancer. The node is in a location that is not safe for radiation or surgery so no treatment at this time.
@sheridonaldson, I'm so sorry to hear of the unexpected loss of your sweetheart. I know these first days after loss are busy and one moves by putting one foot in front of the other. I hope that you have many around you, supporting you and sharing the tasks that have to be done. When and if you need to connect with others, please know that there is also this support group:
- Loss & Grief https://connect.mayoclinic.org/group/loss-grief/
@colleenyoung, thank you so much! It has been a particularly rough week for some reason. But I made it through. I am meeting with a grief counselor the end of this month and will update the forum on how it goes. Again, thankyouthankyouthankyou!
An update: just finished 30 radiation sessions on my neck alongside 3 chemo sessions (day 1, 15, 30). Had neck dissection previously.
I had reached out for second opinion and the pathology
results changed. Still unknown primary but instead of adenocarcinoma, it is small cell neuroendocrine carcinoma involving the lymph node. The 'differential diagnosis ' is metastic small cell carcinoma of the lung'.
I'll get more chemo in a few weeks with a etoposide and cisplatin. 3xweek every 3 weeks repeated 4x. My husband and I are now on the same 3 week chemo rotation.
Anyone know if cool cap works on this type/combo?
Hairloss is pretty low on my concern but everything is worth asking.
An update: just finished 30 radiation sessions on my neck alongside 3 chemo sessions (day 1, 15, 30). Had neck dissection previously.
I had reached out for second opinion and the pathology
results changed. Still unknown primary but instead of adenocarcinoma, it is small cell neuroendocrine carcinoma involving the lymph node. The 'differential diagnosis ' is metastic small cell carcinoma of the lung'.
I'll get more chemo in a few weeks with a etoposide and cisplatin. 3xweek every 3 weeks repeated 4x. My husband and I are now on the same 3 week chemo rotation.
Anyone know if cool cap works on this type/combo?
Hairloss is pretty low on my concern but everything is worth asking.
There is also a monthly meeting on Zoom led by a Mayo Clinic social worker that you can participate in. Neuroendocrine Cancer Zebras meet monthly on the first Thursday every month from 5:30 to 7:00 p.m. Eastern time. See info for the Sept meeting here: https://connect.mayoclinic.org/event/neuroendocrine-cancer-support-group-meeting-16/
An update: just finished 30 radiation sessions on my neck alongside 3 chemo sessions (day 1, 15, 30). Had neck dissection previously.
I had reached out for second opinion and the pathology
results changed. Still unknown primary but instead of adenocarcinoma, it is small cell neuroendocrine carcinoma involving the lymph node. The 'differential diagnosis ' is metastic small cell carcinoma of the lung'.
I'll get more chemo in a few weeks with a etoposide and cisplatin. 3xweek every 3 weeks repeated 4x. My husband and I are now on the same 3 week chemo rotation.
Anyone know if cool cap works on this type/combo?
Hairloss is pretty low on my concern but everything is worth asking.
I would like to join @colleenyoung in welcoming you to Mayo Connect and also in inviting you to join our NETs support group. I see that Colleen gave you some links to the group where I am a member and mentor. I'm sure the other members of the NETs group would be interested in having you share your experience. You will find them to be a very supportive and encouraging group of patients with NETs.
I was diagnosed with NETs over 20 years ago and I understand that this is a rare type of cancer and can be confusing. Will you take a look at the NETs support group?
@colleenyoung, thank you so much! It has been a particularly rough week for some reason. But I made it through. I am meeting with a grief counselor the end of this month and will update the forum on how it goes. Again, thankyouthankyouthankyou!
Good morning everyone--
My meeting with a grief counselor was good. We weren't able to get into too much depth but I will be meeting with her again next week, after the funeral. I hope that the funeral will bring everyone together and give us all some peace. It is not an exaggeration to say that he was loved by everyone who knew him, and he is missed so much.
Good morning everyone--
My meeting with a grief counselor was good. We weren't able to get into too much depth but I will be meeting with her again next week, after the funeral. I hope that the funeral will bring everyone together and give us all some peace. It is not an exaggeration to say that he was loved by everyone who knew him, and he is missed so much.
Cancer update--physically I am still doing ok. Still having chemotherapy and immunotherapy every two weeks and it has slowed the progression down. Hoping that the slowdown continues
--I am several months away from retirement and want to enjoy as much of it as possible 🙂
Cancer update--physically I am still doing ok. Still having chemotherapy and immunotherapy every two weeks and it has slowed the progression down. Hoping that the slowdown continues
--I am several months away from retirement and want to enjoy as much of it as possible 🙂
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Good morning, @kr60cup I just noticed that you’ve been a member for almost 6 years but this is your first time with a reply! So let me officially welcome you to the forum!
You were diagnosed with cancer of unknown primary 7 years ago this month. I’m curious to know if the primary source ever discovered? Have you been treated and now in remission?
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Like -
Helpful -
Hug
2 ReactionsThe primary has never been found. I was treated 2017-2019 with surgery, radiation, and immunotherapy. I have been scanned and tested on a regular basis. The last 3 years I have just had annual test because I had no active cancer. This spring(2024) my brain MRI showed 2 new spots. Those were treated with radiation. Biopsy and surgery were not an option. I also had 2 basil skin cancers and those were treated. I now have cancer in lymph node below esophagus. A biopsy was taken but still unknown cancer. The node is in a location that is not safe for radiation or surgery so no treatment at this time.
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Helpful -
Hug
5 ReactionsGood morning @kr60cup! Thank you so much for sharing. I was diagnosed in May 2022 and this gives me a lot of hope.
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2 Reactions@colleenyoung, thank you so much! It has been a particularly rough week for some reason. But I made it through. I am meeting with a grief counselor the end of this month and will update the forum on how it goes. Again, thankyouthankyouthankyou!
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Helpful -
Hug
4 ReactionsAn update: just finished 30 radiation sessions on my neck alongside 3 chemo sessions (day 1, 15, 30). Had neck dissection previously.
I had reached out for second opinion and the pathology
results changed. Still unknown primary but instead of adenocarcinoma, it is small cell neuroendocrine carcinoma involving the lymph node. The 'differential diagnosis ' is metastic small cell carcinoma of the lung'.
I'll get more chemo in a few weeks with a etoposide and cisplatin. 3xweek every 3 weeks repeated 4x. My husband and I are now on the same 3 week chemo rotation.
Anyone know if cool cap works on this type/combo?
Hairloss is pretty low on my concern but everything is worth asking.
Sounds like for a CUP it's an aggressive type.
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1 Reaction@mbkcanada, you may wish to join the discussions in the Neuroendocrine Tumor (NETs) support group here: https://connect.mayoclinic.org/group/neuroendocrine-tumors-nets/
There is also a monthly meeting on Zoom led by a Mayo Clinic social worker that you can participate in. Neuroendocrine Cancer Zebras meet monthly on the first Thursday every month from 5:30 to 7:00 p.m. Eastern time. See info for the Sept meeting here: https://connect.mayoclinic.org/event/neuroendocrine-cancer-support-group-meeting-16/
Lastly, here are discussions on cold caps: https://connect.mayoclinic.org/search/?search=cold+cap
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2 ReactionsHello @mbkcanada,
I would like to join @colleenyoung in welcoming you to Mayo Connect and also in inviting you to join our NETs support group. I see that Colleen gave you some links to the group where I am a member and mentor. I'm sure the other members of the NETs group would be interested in having you share your experience. You will find them to be a very supportive and encouraging group of patients with NETs.
I was diagnosed with NETs over 20 years ago and I understand that this is a rare type of cancer and can be confusing. Will you take a look at the NETs support group?
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Like -
Helpful -
Hug
2 ReactionsGood morning everyone--
My meeting with a grief counselor was good. We weren't able to get into too much depth but I will be meeting with her again next week, after the funeral. I hope that the funeral will bring everyone together and give us all some peace. It is not an exaggeration to say that he was loved by everyone who knew him, and he is missed so much.
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Like -
Helpful -
Hug
3 ReactionsCancer update--physically I am still doing ok. Still having chemotherapy and immunotherapy every two weeks and it has slowed the progression down. Hoping that the slowdown continues
--I am several months away from retirement and want to enjoy as much of it as possible 🙂
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Helpful -
Hug
3 ReactionsI found this article very helpful, especially the reminder to be mindful:
https://newscenter.mayo.edu/2024/08/13/7-strategies-to-build-resiliency/
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