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.
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.
I appreciate the additional information you shared about your cancer journey. You have very thoughtfully chosen doctors and have looked at treatments that are best suited for you. Being an advocate for your health care is so important and you are doing that.
It sounds like you need to get some more information about this spot on your liver. I'm guessing that blood tests have been done to determine liver functioning.
Keep posting as you have questions. Will you post again when you have more information from your oncologist?
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.
Yes, I have an adenocarsonoma in my liver - Currently still looking.
Hx of melonoma - 6 years ago - shoulder /sentinal lymph node (super small and removed via biopsey - medical supervision since. All scans clear untill ...
a spot showed up 5 months ago in my liver.
Multiple MTI -PET -Endoscopy sigmoid oscopy
It sounds like you have an unknown primary as well. Were you having any symptoms prior to the spot showing up on your liver? Has a biopsy been suggested or has your medical team decided to wait and watch?
Yes, I have an adenocarsonoma in my liver - Currently still looking.
Hx of melonoma - 6 years ago - shoulder /sentinal lymph node (super small and removed via biopsey - medical supervision since. All scans clear untill ...
a spot showed up 5 months ago in my liver.
Multiple MTI -PET -Endoscopy sigmoid oscopy
Are there any cancer fighting foods to possibly help slow the development that any of you recommend to add to his diet that may have helped any of you?
@mattydlb@gisellef@mpuap, with regards to food and cancer, you may be interested in these Mayo Clinic recorded webinars, expert blogs, and related discussions:
Hi:
You could try grating fresh turmeric root into food. It helped a family member with ovarian recurrence for a couple of weeks, enough to get her through the time between diagnosis and treatment.
I had my scan that detected the enlarged lymph nodes beginning of October 2022. I had over a dozen biopsies, along with many scan and scopes for several months. they didn't start my treatments until January 23, 2023, (almost 4 months). They also surgically removed a lymph node and sent it to a company call Tempus labs with the hope that they would help identify. it came back as 70% cervical. Everyone thought it was strong enough result to just treat for that.
I have finished my treatments and had my first scan with was clear. Do you know what the cell type is. In my case this help them go down paths of where that cell type can only be. Mine again was Squamous and would only be found in throat, cervix and anal/rectal. that provided areas to look and direction. To me that would be the biggest question.
I don’t know but hoping to find out more information at his next specialist appointment.
I’m so happy that your results came back all clear that’s fantastic.
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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.
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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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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@mikeh35
I appreciate the additional information you shared about your cancer journey. You have very thoughtfully chosen doctors and have looked at treatments that are best suited for you. Being an advocate for your health care is so important and you are doing that.
It sounds like you need to get some more information about this spot on your liver. I'm guessing that blood tests have been done to determine liver functioning.
Keep posting as you have questions. Will you post again when you have more information from your oncologist?
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.
-
Like -
Helpful -
Hug
1 ReactionHello @mikeh35 and welcome to Mayo Connect.
It sounds like you have an unknown primary as well. Were you having any symptoms prior to the spot showing up on your liver? Has a biopsy been suggested or has your medical team decided to wait and watch?
Yes, I have an adenocarsonoma in my liver - Currently still looking.
Hx of melonoma - 6 years ago - shoulder /sentinal lymph node (super small and removed via biopsey - medical supervision since. All scans clear untill ...
a spot showed up 5 months ago in my liver.
Multiple MTI -PET -Endoscopy sigmoid oscopy
@mattydlb @gisellef @mpuap, with regards to food and cancer, you may be interested in these Mayo Clinic recorded webinars, expert blogs, and related discussions:
Webinars
- Cancer-Fighting Foods https://connect.mayoclinic.org/event/cancer-fighting-foods/
- Disease Fighting Foods https://connect.mayoclinic.org/event/disease-fighting-foods/
Blogs
- Choosing Whole Foods for a Healthier You
https://connect.mayoclinic.org/blog/weight-management-1/newsfeed-post/choosing-whole-foods-for-a-healthier-you/
- Cancer and nutrition
https://connect.mayoclinic.org/blog/podcasts/newsfeed-post/cancer-and-nutrition/
Discussion
Healthy diets for cancer patients
https://connect.mayoclinic.org/discussion/healthy-diets-for-cancer-patients/
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2 ReactionsThanks I will definitely buy some and get my parents to put it with their stir fry’s
I don’t know but hoping to find out more information at his next specialist appointment.
I’m so happy that your results came back all clear that’s fantastic.
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