My name is Sam. I live in wales in the uk. I was diagnosed with CUP the first week of February. I’m 54 with a 12 year old daughter that I gave birth to at 42. Only 1 and she’s a joy! We are in a rare group and the pathology is crucial although in so many cases they often never find the primary as someone says in a post, our immune system already killed it off but sadly after spreading. I have adonacarsenoma. Forgive poor spelling. It’s in my lymph nodes in pelvis and outer lining of stomach. They are treating me with chemo (4rounds) palliative and attacking it as if it is a gynaecology cancer (which I actually believe it is- was at the dr surgery all the time for over a year with elevated CA125 but they kept missing it and then the rash around torso in September- told was menopause. 😔 which it obviously wasn’t. I have double dose chemo paclitaxol and carboplatin. I’ve only done one round and next Tuesday I’ll go for the second. I’m eating a diet of cancer starving foods and take a lot of supplements plus IV vit C because I have to be able to tell my child that I did everything I could. She knows I have cancer but not how serious it is. As a Christian, I trust the Lord completely and despite the horrific experience of it all, know His blessings in abundance. He knows mine and my family’s future and that keeps me. Thanks for letting me be a part of your group and I’m so sad about the dear lady of 44. Praise God too for the wonder of 6/7 years on for the lady’s husband with CUP. We may be far away physically but we are close in our similar circumstances.
I too have CUP also in my lymph nodes in pelvis. My cell type is squamous though. I have just finished my 4th cycle of chemo paclitaxol and carboplatin along with bevacizumab (avistin). After my 3rd scan I showed NED. I will be on the avistin for a total of 2 years as maintenance to keep everything at bay.
Be hopeful, I was where you were just a few months ago. I pray for you that this regimen works for you as well.
My daughter age 44 was diagnosed in January with cancer. She has been treated with chemo for 6 treatments. The cancer is in her liver, Legions on her bone and seems to be spreading. She is very weak and unable to walk any distance. After many test the doctors at Mayo are not able to find the origin. Any help is appreciated. RR
@rita8898, have you heard of RGCC testing? Do your own research, but from what I understand, it can provide origin along with other helpful information.
Hi @rita8898, welcome to Connect. I'd like to introduce you to @cindylb whose husband also has cancer of unknown primary. It can be such a frustrating diagnosis.
While we wait for others to join the conversation, can you tell us a bit more about your situation? Where is the cancer located? What treatments, if any, have you had?
My name is Sam. I live in wales in the uk. I was diagnosed with CUP the first week of February. I’m 54 with a 12 year old daughter that I gave birth to at 42. Only 1 and she’s a joy! We are in a rare group and the pathology is crucial although in so many cases they often never find the primary as someone says in a post, our immune system already killed it off but sadly after spreading. I have adonacarsenoma. Forgive poor spelling. It’s in my lymph nodes in pelvis and outer lining of stomach. They are treating me with chemo (4rounds) palliative and attacking it as if it is a gynaecology cancer (which I actually believe it is- was at the dr surgery all the time for over a year with elevated CA125 but they kept missing it and then the rash around torso in September- told was menopause. 😔 which it obviously wasn’t. I have double dose chemo paclitaxol and carboplatin. I’ve only done one round and next Tuesday I’ll go for the second. I’m eating a diet of cancer starving foods and take a lot of supplements plus IV vit C because I have to be able to tell my child that I did everything I could. She knows I have cancer but not how serious it is. As a Christian, I trust the Lord completely and despite the horrific experience of it all, know His blessings in abundance. He knows mine and my family’s future and that keeps me. Thanks for letting me be a part of your group and I’m so sad about the dear lady of 44. Praise God too for the wonder of 6/7 years on for the lady’s husband with CUP. We may be far away physically but we are close in our similar circumstances.
Thanks for responding. Yes, I’ve finished radiation and chemo. As of now I’m not having immunotherapy as the last 2 PET scans showed no activity. I did chemo( cisplatin) and radiation at the same time. It really did a number on me so to speak. Unfortunately, I’m dealing with lymphedema in my hand and arm with pain on my chest and right side. Hopefully I’ll get relief soon!
@janiebill, I can understand your concern about finding the primary. You can have squamous cell carcinoma on any part of your body. Chemo and radiation together is standard treatment for metastatic SCC regardless of where it started.
Thanks for responding. Yes, I’ve finished radiation and chemo. As of now I’m not having immunotherapy as the last 2 PET scans showed no activity. I did chemo( cisplatin) and radiation at the same time. It really did a number on me so to speak. Unfortunately, I’m dealing with lymphedema in my hand and arm with pain on my chest and right side. Hopefully I’ll get relief soon!
My tumor is of questionable primary origin. Questionable in that Onc thinks it is yet Dermatologist says no. Nevertheless, squamous cells were found so treatment was necessary yet I can’t help but be concerned that a primary has yet to be located. This is for Metastatic cSSC. Chemo ( Cisplatin) and radiation together.
@janiebill, I can understand your concern about finding the primary. You can have squamous cell carcinoma on any part of your body. Chemo and radiation together is standard treatment for metastatic SCC regardless of where it started.
My tumor is of questionable primary origin. Questionable in that Onc thinks it is yet Dermatologist says no. Nevertheless, squamous cells were found so treatment was necessary yet I can’t help but be concerned that a primary has yet to be located. This is for Metastatic cSSC. Chemo ( Cisplatin) and radiation together.
@tobydrake7, it can be disconcerting to have cancer with an unknown primary. It sounds like they are treating your cancer with a regimen typically used for stomach and/or colon cancer. What regimen are you on? How often and how are you doing?
I am on chemotherapy for eight cycles, and I’ve just completed my second treatment. The chemo side effects are manageable, but are unpleasant mostly just feel yucky.
I currently have cancer of unknown primary. Cancerous cells were found in my omentum. Started chemotherapy for gastric/colon cancer last week. Further genetic testing is being done, but no results that would point to a primary yet.
@tobydrake7, it can be disconcerting to have cancer with an unknown primary. It sounds like they are treating your cancer with a regimen typically used for stomach and/or colon cancer. What regimen are you on? How often and how are you doing?
I currently have cancer of unknown primary. Cancerous cells were found in my omentum. Started chemotherapy for gastric/colon cancer last week. Further genetic testing is being done, but no results that would point to a primary yet.
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I too have CUP also in my lymph nodes in pelvis. My cell type is squamous though. I have just finished my 4th cycle of chemo paclitaxol and carboplatin along with bevacizumab (avistin). After my 3rd scan I showed NED. I will be on the avistin for a total of 2 years as maintenance to keep everything at bay.
Be hopeful, I was where you were just a few months ago. I pray for you that this regimen works for you as well.
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1 Reaction@rita8898, have you heard of RGCC testing? Do your own research, but from what I understand, it can provide origin along with other helpful information.
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Helpful -
Hug
1 ReactionMy name is Sam. I live in wales in the uk. I was diagnosed with CUP the first week of February. I’m 54 with a 12 year old daughter that I gave birth to at 42. Only 1 and she’s a joy! We are in a rare group and the pathology is crucial although in so many cases they often never find the primary as someone says in a post, our immune system already killed it off but sadly after spreading. I have adonacarsenoma. Forgive poor spelling. It’s in my lymph nodes in pelvis and outer lining of stomach. They are treating me with chemo (4rounds) palliative and attacking it as if it is a gynaecology cancer (which I actually believe it is- was at the dr surgery all the time for over a year with elevated CA125 but they kept missing it and then the rash around torso in September- told was menopause. 😔 which it obviously wasn’t. I have double dose chemo paclitaxol and carboplatin. I’ve only done one round and next Tuesday I’ll go for the second. I’m eating a diet of cancer starving foods and take a lot of supplements plus IV vit C because I have to be able to tell my child that I did everything I could. She knows I have cancer but not how serious it is. As a Christian, I trust the Lord completely and despite the horrific experience of it all, know His blessings in abundance. He knows mine and my family’s future and that keeps me. Thanks for letting me be a part of your group and I’m so sad about the dear lady of 44. Praise God too for the wonder of 6/7 years on for the lady’s husband with CUP. We may be far away physically but we are close in our similar circumstances.
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Hug
4 ReactionsBut to answer your question…. I feel good!😊
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3 ReactionsThanks for responding. Yes, I’ve finished radiation and chemo. As of now I’m not having immunotherapy as the last 2 PET scans showed no activity. I did chemo( cisplatin) and radiation at the same time. It really did a number on me so to speak. Unfortunately, I’m dealing with lymphedema in my hand and arm with pain on my chest and right side. Hopefully I’ll get relief soon!
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Like -
Helpful -
Hug
1 Reaction@janiebill, I can understand your concern about finding the primary. You can have squamous cell carcinoma on any part of your body. Chemo and radiation together is standard treatment for metastatic SCC regardless of where it started.
Are you finished treatment? How are you doing?
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Helpful -
Hug
1 ReactionMy tumor is of questionable primary origin. Questionable in that Onc thinks it is yet Dermatologist says no. Nevertheless, squamous cells were found so treatment was necessary yet I can’t help but be concerned that a primary has yet to be located. This is for Metastatic cSSC. Chemo ( Cisplatin) and radiation together.
I am on chemotherapy for eight cycles, and I’ve just completed my second treatment. The chemo side effects are manageable, but are unpleasant mostly just feel yucky.
I have a PET scan scheduled for next week.
-
Like -
Helpful -
Hug
1 Reaction@tobydrake7, it can be disconcerting to have cancer with an unknown primary. It sounds like they are treating your cancer with a regimen typically used for stomach and/or colon cancer. What regimen are you on? How often and how are you doing?
-
Like -
Helpful -
Hug
1 ReactionI currently have cancer of unknown primary. Cancerous cells were found in my omentum. Started chemotherapy for gastric/colon cancer last week. Further genetic testing is being done, but no results that would point to a primary yet.