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.
Hi Teresa,
I will briefly run through my history
I have been a career firefighter for 45 years. I retired 3 years ago and I am still involved with the fire dept as a certified fire and explosion investigator. I recognize this automatically puts me at a high rick for cancer.
In 2016 I had a mishapen mole on my left shoulder. PCP took a sample that came back + for melonoma. Sent to local "cancer" doc. Sentinal lymph node biopsy - took extended time for pathology to return -small spot, + melonoma. Believed to have been removed during LNB. The local doc wanter to remove lymph nodeds left side.
At that time I wanted a second opinion, I am familiar with the lasting effects of lymph node removal.
I am fortunate that I live an hour away from Fred Hutch and UW Medical Ctr
I meet with Dr. David Byrd and was told of large study of the simular type issue. Half had lymph nodes removed and half chose medical surveillance. He also indicated that lymph node removal was method of choice 5 years ago.
I chose Fred Hutch as my new provider and also chose medical surveillance.
For 5 and a half years I had multiple CT, ultra sounds and skin monitoring per year with decreasing frequency as time went on. Nothing ever showed up as out of the ordinary untill, on what was to be my last scan, something showed up on the CT scan in my liver. This was followed up with MRI, Biopsy. Biopsy came back as adenocarsonoma.
My oncologist believed this was not melonoma and also not the primary site of the cancer. Followed up with PET scan, endoscopy, sigmoidoscopy and additional MRI of left thigh(indicated on PET scan) I am awaiting results. From what I can read from the MRI is that nothing stands out. Strangely, it is seems counter intuotive to "want" something to show up. But I do.
I am waiting consult from last MRI. Prior the oncologist kind of charted a path toward chemo / raditaion. I will know more in a week.
As to your question, I have had no symptoms of anykind during this journey.
Not shuch a "brief" hx
Mike
Also, I am willing to share any/all of my reports.
Mike, I totally get your statement "Strangely, it is seems counter-intuitive to 'want' something to show up. But I do." My long search for a diagnosis has gotten exactly nowhere, so my feeling now is always "no news is bad news, and bad news would actually be good news". Really hope you find answers and treatments that work best for you. Take care and cheers.
UPDATE: I had my zoom call today with my Dr. All scans are clear outside my liver. Many areas have been eliminated. My care is being transferred to the UW / Fred Hutch Center for Advanced Minimally Invasive Liver Oncologic Therapy (CAMILOT) This group specifically deals with GI cancers. My melonoma issue is now considered complete. We are slowly peeling the onion to get to the source and deal with whatever comes next on my journey.
I will keep posting updates as they happen.
I wish all of you in the same situation the best of luck.
Seek the best of care possible. Don't take the "easy" route or settle for less than the best. As an example, I am 47 miles away from a top 10 cancer research center, it takes 3 hours travel time each way. ( Yes, I have come to hate Seattle traffic) I have local cancer resources (20 minutes away) and that is where I started. I want treatment at a research facility that sees thousands of patients, not hundreds. Always be an advocate for your care, ask questions, seek advice and even second opinions.
I so appreciate the update. You are wise to seek the best care possible even though you need to travel further as well as understanding the importance of advocating for yourself.
This is a journey, and it sounds like you are well on your way. I look forward to continuing to have updates.
UPDATE: I had my zoom call today with my Dr. All scans are clear outside my liver. Many areas have been eliminated. My care is being transferred to the UW / Fred Hutch Center for Advanced Minimally Invasive Liver Oncologic Therapy (CAMILOT) This group specifically deals with GI cancers. My melonoma issue is now considered complete. We are slowly peeling the onion to get to the source and deal with whatever comes next on my journey.
I will keep posting updates as they happen.
I wish all of you in the same situation the best of luck.
Seek the best of care possible. Don't take the "easy" route or settle for less than the best. As an example, I am 47 miles away from a top 10 cancer research center, it takes 3 hours travel time each way. ( Yes, I have come to hate Seattle traffic) I have local cancer resources (20 minutes away) and that is where I started. I want treatment at a research facility that sees thousands of patients, not hundreds. Always be an advocate for your care, ask questions, seek advice and even second opinions.
Good morning everyone. I was diagnosed with cancer, unknown primary in May of 2022. I was originally treated with avastin, irinotecan, leucovorin, oxaliplatin, 5-fluorouracil and several medications to lessen side effects, including zofran (my second-best friend--more on my best friend later). This continued, every two weeks, until November 2022. At that time, the irinotecan and oxaliplatin were removed and I was on what was considered maintenance therapy. Then, earlier this summer, one of my tumors started growing, so irinotecan was added to my every-two-week routine. Three weeks ago, Opdivo, an immunotherapy was added. It has been quite a journey to say the least.
I have been very lucky regarding side effects. The worst of them is fatigue...nausea has been neutralized with zofran and prochlorperazine maleate (usually zofran does the trick though), constipation with lactulose, diarrhea with immodium. The only thing that touches the fatigue is exercise, which has been hard to come by. My best friend has Huntington's disease and has just moved into a long-term care facility that is about 90 minutes away from where I live. I miss him terribly. But still being able to work helps. I look forward to sharing more here.
I have a zoom call next week to go over the last MRI and discuss the path from here.
I feel fortunate to have this level of care close to me. Many do not. I am very confident in my care team.
I have a zoom call next week to go over the last MRI and discuss the path from here.
I feel fortunate to have this level of care close to me. Many do not. I am very confident in my care team.
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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.
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.
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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.
Mike, I totally get your statement "Strangely, it is seems counter-intuitive to 'want' something to show up. But I do." My long search for a diagnosis has gotten exactly nowhere, so my feeling now is always "no news is bad news, and bad news would actually be good news". Really hope you find answers and treatments that work best for you. Take care and cheers.
-
Like -
Helpful -
Hug
3 ReactionsHello @mikeh35,
I so appreciate the update. You are wise to seek the best care possible even though you need to travel further as well as understanding the importance of advocating for yourself.
This is a journey, and it sounds like you are well on your way. I look forward to continuing to have updates.
-
Like -
Helpful -
Hug
1 ReactionUPDATE: I had my zoom call today with my Dr. All scans are clear outside my liver. Many areas have been eliminated. My care is being transferred to the UW / Fred Hutch Center for Advanced Minimally Invasive Liver Oncologic Therapy (CAMILOT) This group specifically deals with GI cancers. My melonoma issue is now considered complete. We are slowly peeling the onion to get to the source and deal with whatever comes next on my journey.
I will keep posting updates as they happen.
I wish all of you in the same situation the best of luck.
Seek the best of care possible. Don't take the "easy" route or settle for less than the best. As an example, I am 47 miles away from a top 10 cancer research center, it takes 3 hours travel time each way. ( Yes, I have come to hate Seattle traffic) I have local cancer resources (20 minutes away) and that is where I started. I want treatment at a research facility that sees thousands of patients, not hundreds. Always be an advocate for your care, ask questions, seek advice and even second opinions.
-
Like -
Helpful -
Hug
5 ReactionsGood morning everyone. I was diagnosed with cancer, unknown primary in May of 2022. I was originally treated with avastin, irinotecan, leucovorin, oxaliplatin, 5-fluorouracil and several medications to lessen side effects, including zofran (my second-best friend--more on my best friend later). This continued, every two weeks, until November 2022. At that time, the irinotecan and oxaliplatin were removed and I was on what was considered maintenance therapy. Then, earlier this summer, one of my tumors started growing, so irinotecan was added to my every-two-week routine. Three weeks ago, Opdivo, an immunotherapy was added. It has been quite a journey to say the least.
I have been very lucky regarding side effects. The worst of them is fatigue...nausea has been neutralized with zofran and prochlorperazine maleate (usually zofran does the trick though), constipation with lactulose, diarrhea with immodium. The only thing that touches the fatigue is exercise, which has been hard to come by. My best friend has Huntington's disease and has just moved into a long-term care facility that is about 90 minutes away from where I live. I miss him terribly. But still being able to work helps. I look forward to sharing more here.
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Helpful -
Hug
4 ReactionsI hope you get some more information from your Zoom call next week, @mikeh35. Will you post updates as it's convenient for you?
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Helpful -
Hug
1 ReactionI have a zoom call next week to go over the last MRI and discuss the path from here.
I feel fortunate to have this level of care close to me. Many do not. I am very confident in my care team.
-
Like -
Helpful -
Hug
3 Reactions