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?
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.
@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!
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.
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?
Good morning everyone,
It is time for an update. I am still on maintenance chemo although at my last CT scan, there was very slight growth in some of my...well, growths. Still feeling pretty good physically, but emotionally, I am sad because my sweetheart, who was doing well, unexpectedly died this past weekend. I was very fortunate to have spent time with him the day before and to have been close by (his nursing home was 90 minutes from where I live because although he was mentally still cognizant, he no longer could perform any of his ADLs, and there were no facilities that could take care of him in my community). I am very lucky that: 1) we met 12 years ago; and 2) had the time and adventures together that we had! Quality over quantity...
Thanks for reading this far. Remember, cancer is tough but we are tougher.
Sheri
@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/
Thank you @lizfuller for sharing this. It is very helpful.
Aside from my chemo and radiation plan , I've been told 'time will tell' approach which I cannot accept. And plan to travel to US for more frequent tests such as you did. Pathologists are indicating possible gi etc.
The lab is Tempus, correct?
Your earlier pathology wasn't sent to Tempus. It was after it appeared in lungs and this confirmed 'primary site' ?
Best of luck with your upcoming systemic treatment.
Connect
Connect
Like
Helpful
Hug
Hello @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?
-
Like -
Helpful -
Hug
2 Reactions@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
-
Like -
Helpful -
Hug
2 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.
-
Like -
Helpful -
Hug
1 Reaction@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!
-
Like -
Helpful -
Hug
4 ReactionsGood morning @kr60cup! Thank you so much for sharing. I was diagnosed in May 2022 and this gives me a lot of hope.
-
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.
-
Like -
Helpful -
Hug
5 ReactionsGood 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?
-
Like -
Helpful -
Hug
2 ReactionsYes, I was diagnosed in July of 2017 with CUP.
-
Like -
Helpful -
Hug
1 Reaction@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/
Sending you a virtual hug.
-
Like -
Helpful -
Hug
5 Reactionsyes. good luck with your hunt.