Yes appointment went well. He said this does not respond chemo so offered an hormone injection given once a month and then reevaluate tumors in 3 months. He said no cures but this injection might stop spread and possibly shrink them. Also getting a referral for second opinion.
I am very new to my diagnosis of neuroendocrine pancreatic cancer stage 4. My primary tumor is in the tail of the pancreas with other tumors in the liver and lymph nodes. Does anyone have information on this type of cancer? I see the oncologist tomorrow.
Please do not let this news of liver lesions take you down! I had them all over my liver when diagnosed in 2021. A combination of chemo, surgery, prayer, eating well, staying engaged, and thinking positively has gotten me to a place of minimal disease.
This can be viewed as a chronic condition if one can get it under control quickly. I was stage IV so it took a bit!
Also there is much going on if we can continue to support research funding. I have consulted with multiple SPECIALISTS in this field and learn something new each time.
The most important “rabbit hole” you can go down is one related to your personal gene mutations so that target therapies might be used. Chemo variants/radiation/immunotherapy may work for some but not for others.
Be sure to get second opinions and stay connected via their clinic portals.
I have met with John’s Hopkins, Honor Health and now Cedars Sinai. Each had unique and interesting suggestions or confirmed that I was on the right path.
Also-do not let anyone tell you that stage Iv is inoperable. Always get 2nd opinions. I am here because I did!!!
God bless all who are challenged by this disease.
Thank you very much for this encouraging info this morning
right now my husband is being treated with a chemotherapy that is for both his pancreatic tumor and liver lesions
Onivyde 50 mg for an hour and a half at the clinic ,then he comes home with a chemo pump with Fluorouracil 900 mg for 46 hours
I think they will increase the dose if he tolerates this well, he just started this treatment last week and it's every other week
Praying it works✝️🛐
Please do not let this news of liver lesions take you down! I had them all over my liver when diagnosed in 2021. A combination of chemo, surgery, prayer, eating well, staying engaged, and thinking positively has gotten me to a place of minimal disease.
This can be viewed as a chronic condition if one can get it under control quickly. I was stage IV so it took a bit!
Also there is much going on if we can continue to support research funding. I have consulted with multiple SPECIALISTS in this field and learn something new each time.
The most important “rabbit hole” you can go down is one related to your personal gene mutations so that target therapies might be used. Chemo variants/radiation/immunotherapy may work for some but not for others.
Be sure to get second opinions and stay connected via their clinic portals.
I have met with John’s Hopkins, Honor Health and now Cedars Sinai. Each had unique and interesting suggestions or confirmed that I was on the right path.
Also-do not let anyone tell you that stage Iv is inoperable. Always get 2nd opinions. I am here because I did!!!
God bless all who are challenged by this disease.
I have mucinous pancreas cancer on the tail & I had 2 lesions on my liver. I have been receiving chemo for the past 16 months. During this time, one of my liver lesions kept getting smaller and disappeared. My oncologist presented my case during a web chat about tumors and possible treatments. All the doctors felt I was a good candidate for radioembolization of my liver lesion. This procedure uses very, very tiny glass beads that have radioactive isotopes attached to them. The beads are then placed in a blood vessel near your groin & the beads are placed in the blood vessel that is feeding the lesion. Before this procedure, they map the blood vessels so none of the isotopes end up in the lungs or else where. I had Dr. Sarah White at Froedert Hospital in Milwaukee, Wi. I was told this procedure was usually done for liver cancer patients. I had this done on Feb. 9, I was awake during the procedure but had been given meds to relax me. I was told the main side effect would be feeling very tired & I was very tired most of February! You also need to keep drinking lots of fluids to flush out the liver. Fortunately this only affected 15% of my liver & it's supposed to regenerate. I'm having a CT on Thursday, so Dr. White can see what if anything happened to the liver lesion and I will be seeing her on March 12, to hear the results. I was told the FDA had approved this procedure 6 months ago but they have been using this for over 20 years. My husband & I were blown away when this was explained to us. We are hopeful to see positive results.
I will know tomorrow when we have our appt
I'll ask about ablation for liver lesions
The ablation treatment was just a mention from an OR nurse that works at the Brigham and she had seen it done
We will see if our oncologist just recommends Chemo
And you are so right we are all trying to find hope to keep pancreatic pts alive
As one person said and I love it.."let's make this a chronic disease"
The chemo regimen that he will be on is
ONIVYDE
FLUOROURACIL 900 mg for 46 hours
I think they may increase the dose if he tolerates these doses, we hope he does
We are all stuck in this boat and we have to stay afloat!! Keep rowing everyone!!
Thank you so much for that info, @bceg1969 . I can't say that I'm surprised. Pancan is so aggressive and so elusive that if there's even a suspicion of more than one lesion, a lot of possibilities are suddenly not available. Sorry that you're stuck in this boat too, but at least we're all rowing together and working together. Which chemo regimen will you be using? I hope all goes well!
Is there any way you can provide more info? I have to be honest--all of us with pancreatic cancer, in one way or another, are digging deep to find hope and possibilities. The strength of this board is in its crowdsourcing. We share what we learn with each other, and we individually take that info and proceed from there. If you have information from MassGeneral Brigham that could be useful to all of us, please do share. The things you mention offer a new avenue for me to explore, so I would really appreciate knowing more about the treatments, the drugs, which patients might qualify, etc. Thanks in advance for anything you can provide!
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Yes appointment went well. He said this does not respond chemo so offered an hormone injection given once a month and then reevaluate tumors in 3 months. He said no cures but this injection might stop spread and possibly shrink them. Also getting a referral for second opinion.
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1 Reaction@justme54, welcome. How did your appointment go with the oncologist? Did you discuss treatment options? How are you doing?
Thank you very much for this encouraging info this morning
right now my husband is being treated with a chemotherapy that is for both his pancreatic tumor and liver lesions
Onivyde 50 mg for an hour and a half at the clinic ,then he comes home with a chemo pump with Fluorouracil 900 mg for 46 hours
I think they will increase the dose if he tolerates this well, he just started this treatment last week and it's every other week
Praying it works✝️🛐
-
Like -
Helpful -
Hug
1 ReactionPlease do not let this news of liver lesions take you down! I had them all over my liver when diagnosed in 2021. A combination of chemo, surgery, prayer, eating well, staying engaged, and thinking positively has gotten me to a place of minimal disease.
This can be viewed as a chronic condition if one can get it under control quickly. I was stage IV so it took a bit!
Also there is much going on if we can continue to support research funding. I have consulted with multiple SPECIALISTS in this field and learn something new each time.
The most important “rabbit hole” you can go down is one related to your personal gene mutations so that target therapies might be used. Chemo variants/radiation/immunotherapy may work for some but not for others.
Be sure to get second opinions and stay connected via their clinic portals.
I have met with John’s Hopkins, Honor Health and now Cedars Sinai. Each had unique and interesting suggestions or confirmed that I was on the right path.
Also-do not let anyone tell you that stage Iv is inoperable. Always get 2nd opinions. I am here because I did!!!
God bless all who are challenged by this disease.
-
Like -
Helpful -
Hug
6 ReactionsI have mucinous pancreas cancer on the tail & I had 2 lesions on my liver. I have been receiving chemo for the past 16 months. During this time, one of my liver lesions kept getting smaller and disappeared. My oncologist presented my case during a web chat about tumors and possible treatments. All the doctors felt I was a good candidate for radioembolization of my liver lesion. This procedure uses very, very tiny glass beads that have radioactive isotopes attached to them. The beads are then placed in a blood vessel near your groin & the beads are placed in the blood vessel that is feeding the lesion. Before this procedure, they map the blood vessels so none of the isotopes end up in the lungs or else where. I had Dr. Sarah White at Froedert Hospital in Milwaukee, Wi. I was told this procedure was usually done for liver cancer patients. I had this done on Feb. 9, I was awake during the procedure but had been given meds to relax me. I was told the main side effect would be feeling very tired & I was very tired most of February! You also need to keep drinking lots of fluids to flush out the liver. Fortunately this only affected 15% of my liver & it's supposed to regenerate. I'm having a CT on Thursday, so Dr. White can see what if anything happened to the liver lesion and I will be seeing her on March 12, to hear the results. I was told the FDA had approved this procedure 6 months ago but they have been using this for over 20 years. My husband & I were blown away when this was explained to us. We are hopeful to see positive results.
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Helpful -
Hug
9 ReactionsMy oncology team said they will doo ablation if the lesions are dissolved with the chemo he is getting now
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1 ReactionDo chemotherapy and ablation concurrently. And ask about immune therapy - do you have any actionable mutations?
The chemo regimen that he will be on is
ONIVYDE
FLUOROURACIL 900 mg for 46 hours
I think they may increase the dose if he tolerates these doses, we hope he does
We are all stuck in this boat and we have to stay afloat!! Keep rowing everyone!!
-
Like -
Helpful -
Hug
1 ReactionThank you so much for that info, @bceg1969 . I can't say that I'm surprised. Pancan is so aggressive and so elusive that if there's even a suspicion of more than one lesion, a lot of possibilities are suddenly not available. Sorry that you're stuck in this boat too, but at least we're all rowing together and working together. Which chemo regimen will you be using? I hope all goes well!
Ablation is used for a lesion not several
My oncologist is just using chemo for now