Pancreatic Cancer with Mets to the Liver: Lost and wondering!

Posted by belana0165 @belana0165, Aug 25, 2023

Lost and Wondering Did We Do Everything? Is there anything else we can do?
We took my mother (who's in her 80s and worked in a foundry until she was 78 and up until a few moths ago was out playing bingo and visiting the local casino) in to the emergency department because she fell at 2300 and the ED is the only thing open. We thought dehydration and we would be home. ED doctor sees my sister and I speaking in the hall outside my mothers room and comes in and says " well you know she has cancer " What? –the expression on my siters face was heartbreaking not to mention the devastating news of cancer!!
She is admitted and the hospitalist comes in and asks us how much do we know about our mothers condition. We reply, not much other than what the ED doctor told us and that she had a US she had done last week that showed some spots on the liver and a MRI was done on Friday, but no results yet. The Hospitalist said that he would see if the results could be rushed and he would be back.
The entire time my sister and I are in a huge haze and nothing makes sense.
The hospitalist returns and first thing out of his mouth is " I'm sorry but I don't have any good news. Your mother has a large mass on her pancreas with mets to the liver. " He then proceeds to tell us that the prognosis is not good and surgery is not an option–but that he is not a oncologist but in his opinion there is nothing they can do for her, but again he states that he is ?not an oncologist " but will have one come see us. Wait, wait , wait–what just happened??My siter breaks down and I am just sitting there trying to process this information.
Oncologist comes in and tells us pretty much the same thing–I ask about surgery, chemo, radiation , anything all of which he feels will not prolong her life, Quality vs, quantity–we want both.
We were discharged a few days later with Hospice and here we are today–lost and feeling awful, wondering if we have done everything we can.

Interested in more discussions like this? Go to the Pancreatic Cancer Support Group.

@anindita

What are the ways to prevent or stop mets. I am feeling so helpless. My father 61 yr old was diagnosed with pancreatic adenocarcinoma in January 2023. He underwent 12 rounds of FOLFIRINOX before surgery and 2 rounds after surgery.
Undegone whipples in August 2023. Now there shows lesion in liver in March 2023. What to do further? What is the treatment? Can the lesions disappear from chemo?
Anything about immunotherapy?

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Hi @anindita, that is hard news to hear that the cancer has spread to your father's liver after chemo and surgery. I'm tagging a few members like @asingh90 @ro0891 @kathy2000 who have this experience with their family member.

Anindita, has further chemo been suggested for you father? What chemo combination has been recommended?

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@colleenyoung

Hi @anindita, that is hard news to hear that the cancer has spread to your father's liver after chemo and surgery. I'm tagging a few members like @asingh90 @ro0891 @kathy2000 who have this experience with their family member.

Anindita, has further chemo been suggested for you father? What chemo combination has been recommended?

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Yes. Gem+nab-pacli regimen

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@anindita

Yes. Gem+nab-pacli regimen

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Hello Anindita, I'm sorry to hear about your father. If it is only one lesion or a couple, they could potentially try radiation on that area of the liver. There are also a lot of minimally invasive techniques like Y90 or ablation to remove the lesion safely, as long as it is only one or a few lesions. The only downside of doing radiation or minimally invasive techniques is that they don't prevent new lesions from coming back on the liver or in other parts of the body as well. They only get rid of the disease on that particular spot. Chemo, on the other hand, could potentially kill the cancer cells all over the body and prevent it from spreading for as long as the chemo works for. Assuming your Dad is in otherwise good health and wants aggressive treatment, I would recommend you ask your doctors to do some interventional work on the liver to get rid of the new lesions and then do chemo under the new gem+nab regime right after. I also will add that it is super important that you do genetic testing on your father's tumor in order to see if it has any unique mutations or fusions that can be targeted by different types of medicines. Lastly, please make sure you are at a top cancer hospital, as they have all the latest techniques and options. Regular hospitals just give you the textbook answers and are generally much less aggressive with treatment. I wouldn't be surprised if you get pushback from your doctors advising you not to do the liver specific treatment because they'll say if the chemo works, it will kill the liver lesions, so what is the point of the liver intervention. The only downside of the liver intervention is that you don't have a lesion to measure if the chemo regime is working. If you start chemo when there is no visible cancer in the body, you don't know if the chemo is working. But on the other hand, if you don't do the liver intervention and the chemo doesn't work, you might lose the chance to do liver-specific treatment because you can't do that treatment if there are many lesions on the liver. If you want to be aggressive, tell them you still want to do the liver intervention and chemo after, and then see what happens. If the next chemo regime works well, then for the time being everything will be stable. Moreover, there are some doctors out there that claim they can test tumor cells in a lab to see which chemo has the best response to those cells. Most doctors say this is complete nonsense, while a few claim massive success with it. If you are interested, you can potentially try it out. I'm so sorry you are going through this and unfortunately, there is no "good" answer here. It all depends on how aggressive you want to be and how much your Dad can withstand in terms of side effects. I've been in your shoes and I know how tough it can be. I wish you all the best.

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Hello to the family suffering from
This sudden diagnosis. My daughter, who is 63, was recently diagnosed with Stage 4 pancan with 2lesions on her liver. She is undergoing chemo therapy, (surgery not an option for most pancans.) which slows down the growth of the tumor. Liver lesions are secondary to getting the cancerous tumor somewhat under control. I’m sure you are reading and learning all about this dreadful form of cancer. My daughter is responding well now, and we hope for at least five more years with her or for a cure to be developed before then. Lots of work being done in the research labs. Love your mother and live each day fully. Hugs to you all.

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@colleenyoung

Hi @anindita, that is hard news to hear that the cancer has spread to your father's liver after chemo and surgery. I'm tagging a few members like @asingh90 @ro0891 @kathy2000 who have this experience with their family member.

Anindita, has further chemo been suggested for you father? What chemo combination has been recommended?

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Hi @anindita

Our stage IV diagnosis was in Nov 2022. We have transitioned to a fully organic clean diet, sugars that do not affect blood sugar. Monk fruit sugar is now a staple in our home. We are working with an Integrative Health and Cancer coach in addition to chemotherapy. My husband said he no longer eats what his mind wants…he eats what his gut needs. He feels great and is able to excercise and do everything he once did.

Our journey started with folforinox (9 cycles), then folfiri due to neuropathy, capiri was started due to 5-FU shortage. Although he is feeling great the CA19-9 started to creep up and CT confirmed some growth in liver and lung. After 24 rounds we will begin gem/abraxane next week.

We also incorporate meditation, infrared sauna therapy.

We are trying it all!

Blessings @kathy2000

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@kathy2000

Hi @anindita

Our stage IV diagnosis was in Nov 2022. We have transitioned to a fully organic clean diet, sugars that do not affect blood sugar. Monk fruit sugar is now a staple in our home. We are working with an Integrative Health and Cancer coach in addition to chemotherapy. My husband said he no longer eats what his mind wants…he eats what his gut needs. He feels great and is able to excercise and do everything he once did.

Our journey started with folforinox (9 cycles), then folfiri due to neuropathy, capiri was started due to 5-FU shortage. Although he is feeling great the CA19-9 started to creep up and CT confirmed some growth in liver and lung. After 24 rounds we will begin gem/abraxane next week.

We also incorporate meditation, infrared sauna therapy.

We are trying it all!

Blessings @kathy2000

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Thank you so much @kathy2000 That was quite informative and helpful.

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@anindita

What are the ways to prevent or stop mets. I am feeling so helpless. My father 61 yr old was diagnosed with pancreatic adenocarcinoma in January 2023. He underwent 12 rounds of FOLFIRINOX before surgery and 2 rounds after surgery.
Undegone whipples in August 2023. Now there shows lesion in liver in March 2023. What to do further? What is the treatment? Can the lesions disappear from chemo?
Anything about immunotherapy?

Jump to this post

Apparently my BRCA2 mutation makes a big difference, as would other mutations. A support group called “pancan” will give you a free genetic panel if his doctors/insurance happened not to. They gave me one faster than I could get it otherwise.

I certainly hope chemo can remove my liver lesions, but I have been warned not to expect it. Every case is different, mine were extensive already when I was first diagnosed.

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@pdacbrca2

Apparently my BRCA2 mutation makes a big difference, as would other mutations. A support group called “pancan” will give you a free genetic panel if his doctors/insurance happened not to. They gave me one faster than I could get it otherwise.

I certainly hope chemo can remove my liver lesions, but I have been warned not to expect it. Every case is different, mine were extensive already when I was first diagnosed.

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What was your case exactly?

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@anindita

What was your case exactly?

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My PDAC was spotted “incidentally” during a scan of my kidney. It had already spread to my liver extensively, so it was stage IV by the time anyone knew about it.

I have a BRCA2 mutation, and apparently that is *very* fortunate, because they know how to treat it well. Chemo of gemcitabine+cisplatin stopped the tumor growth and shrunk it, and my CA19-9 dropped dramatically. Very soon now I’ll be switching to a “PARP inhibitor” for maintenance, already known to have good outcomes for my subgroup. I may join a trial that adds keytruda (which I don’t think is already known to be especially effective for my type of tumor, this is how we find out).

So the BRCA2 mutation, which has caused more cancers in my family, at least created a relatively treatable cancer in my pancreas. Today—I don’t think we had any idea at all how to treat it differently 10 years ago. The science *is* advancing.

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I am in similar situation to pdacbrca2. Diagnosed stage 4 Pdac 13 months ago, also brca 2 mutation…. 12.5 rounds of chemo and now in a clinical trial of a stage 1b drug and hoping it t will be as effective as the chemo was in shrinking tumours…

Tried to get the PARPi but it isn’t blessed in Australia and astra zeneca wouldn’t buy into providing on compassionate grounds! Quite disheartening! Hopefully the trial works or I assume back onto lore chemo

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