Apparently my friend's cancer has spread: How can I help him?

Please remind him of a few things.
1) a radiation doctor is not a pancreas specialist. Other opinions and options should always be researched, esp if he is otherwise healthy!
2) there are many trials that are having success and people are living longer and longer with this disease. His plan and prognosis should come from Pancreatic centers of excellence; and be based on multiple opinions!

IIRC, he had really bad reactions to Folfirinox, and a partial response to Gem+Abrax. Along with surgery, he has received most of the basic, Standard of Care treatments, so advanced drugs and clinical trials should be on the mind soon.

If he's still responding (or was before surgery) to the GA, he should probably be back on that until he can find an appropriate trial. If cisplatin was not part of his GA routine, they could consider adding that, especially if he has relevant mutations like ATM. Other mutations like BRCA1, BRCA2, and PALB are targetable with PARP inhibitors. There are now several trials open with KRAS inhibitors, and since KRAS alterations drive a majority of pancreatic cancers, one of these might be appropriate for him.

The advanced treatments (immunotherapy and targeted therapy) tend to be a bit less harsh on the body than SoC treatments for PC, and being on one might enable him to take a little more care of himself. I know you're fighting your own cancer battle while taking care of him, and having been in the same boat (caring for my dad while fighting my own PC), I know how hard that is -- and I know that as much as you want to help, it might not be practical for you to basically fight two cancers at once.

If you haven't already done so, you should connect him with a case worker at PanCan (the Pancreatic Cancer Action Network, https://pancan.org/ ) to ask for advice and see what they can do to "manage" him. The Social Work department at his treating hospital should also be able to suggest something. PanCan is also good at helping find appropriate clinical trials. His treating institution in Virginia should also be able to help with that, but my experience is that when you ask any institution that question, they don't suggest or even know about any trials going on besides their own. My gut feeling, knowing that they were willing to do surgery on him just a few months after a CA19-9 reading of 33000, and are now talking about more "chemo" is that pancreatic cancer may not really be their specialty. With a CA19-9 reading of 10000 this soon after surgery, traditional SoC chemo is not likely to buy him 3 years. Most people cannot stay on Folfirinox or Abraxane more than a year due to neuropathy, drug resistance, or both.

(Remember I have zero medical training and those are just my perceptions based on some reading and a very small sample population. I also know your friend is a fighter and not just a statistic.)

Finally, I also realize that with him not being a US citizen there are more complications regarding reimbursement for his care. If PanCan or a veterans organization here can't find a solution but options exist back in England, he may have to consider that. It's his choice. You have earned your sainthood already.

@markymarkfl the radiation doc was the one who suggested possibly a different chemo not his oncologist...his oncologist is part of the pancreatic specialist team he was assigned to at the cancer center, so we're waiting to hear from him, the "official read" on the CT scan just hit mychart on Sat so hopefully we'll hear something from him tomorrow... the reason he didn't do the Folfirinox regimen was his port got infected and had to be removed, hence the gemzar/abraxane which could be administered via iv and it brought his CA19 down into normal range, but his veins basically were shot by time for surgery...and even at surgery his CA19 was around 30 i think. obviously the oral chemo they have him on with the radiation isn't helping....so who knows about that...as for the neuropathy yes he got that in his hands and a little in his foot but mostly his fingertips...as for care, he has a better shot of getting care here than in England.. and he has no close surviving family (closest i've been able to locate is a 2nd cousin who hasn't seen him since he was a kid, and lives in NJ and a third cousin in England who has never met him but only heard of that branch of the family) so really my hubby and i are closest thing to family he has...i'm hoping the doc will have some ideas since they do have several trials going on there as well as possibly the other options...i don't think they've done dna testing on him yet, so definitely worth asking about to see if he has any of those mutations etc.. i'm just highly concerned about his mental state atm...and tbh idk how to help him with that...imo he really needs to talk to a social work counselor etc but is very resistant to doing so who knows, but he will at least talk to the chaplain...so thats something..
i just wish there was something more i could do to help him... i know his doc was highly excited because they had caught it so early and was expecting such good results...so who knows...

@mommacandy ,

It's great that he's willing to talk with a chaplain. There's a valuable reality check in assessing one's own mortality and being able to make plans around it.

Without any other nearby relatives, finding a reason to live and fight may be difficult. I have a neighbor/classmate in a similar situation related to his liver. He's weighing the choice between one more medical intervention and letting nature take its course. 🙁

I think the chaplain may also help your friend realize how blessed he is to have access to the care you, your husband, and a nearby institution are providing him. If he's able to get into an appropriate trial and get some quality extension of life from it, maybe those around him can help steer him to examine "his purpose in life and why he's still here" which may reshape his outlook on life and plans for the future.

I'm extremely grateful that @stageivsurvivor not only chose to fight, but has made cancer advocacy a huge part of his post-retirement life. That has given me immense hope and motivation to keep fighting, as well as hoping I can inspire others to do the same. My fight and the blessings of my family, friends, care providers, and God have given me more life (+ quality of life) than imagined since my Stage IV recurrence was detected 1.5 years ago and have gotten me to a point where an upcoming clinical trial might extend that even more.

Your friend definitely seems to be "beyond the Standard of Care" and in the territory of needing access to a clinical trial. I hope some of the resources mentioned earlier can help navigate that for him while you and his chaplain and anyone else can keep his spirits and motivation up. I continue praying for you both.

I think it was @gamaryanne who once mentioned a support group or PanCan convention in her area. It sounded like a really encouraging and uplifting environment. If there's something like that in your area, it may benefit your friend to connect in-person with others in similar circumstances.

so he threw this out at me yesterday when i was talking to him ...he informed me he doesn't want any more chemo.. if there's other options that won't make him so sick he might be willing to consider them but he isn't interested in something that will extend his life but make him miserable for what remains of it, he'd rather be comfortable ...he doesn't want to spend his remaining time "puking his guts up and sitting on a toilet when he's too weak to walk across a room without a walker".
He also told me that he had prayed when we first found out about me having cancer and mine being so extensive (for those of you who don't know mine is stage 3c metastatic ovarian) that if one of us had to be taken, let it be him since i still have my husband and kids etc and he has no one... i swear i cried when i heard that but still, this is my best friend... and i know in John 15:13 it says "Greater love hath no man than this, that a man lay down his life for his friends" and i get in his mind it was the only way he knew to try to help me...but geez...so in his mind, this finding of the spots on the liver have been an answer to his prayer... i'm just overwhelmed i guess... we were so hopeful since we were told it hadn't spread outside the pancreas before his surgery, then the surgeon says well it was in two lymph nodes near the pancreas but we got those out as well and we're pretty confident we got it all...but we ant you to do radiation etc just in case of microcells that might have escaped etc... so we were looking at him coming home after radiation and spending time rebuilding his homestead...

As @gamaryanne and @markymarkfl suggest, clinical trials should be explored. If he is being treated at a comprehensive cancer center, surgical tumor tissue was likely sent for molecular profiling using Next Generation Sequencing. It is used to determine if somatic (spontaneous/sporadic) mutations and actionable biomarkers exist that can be matched to a clinical trial. If none are found, there is another category of trials using small molecule drugs targeting various cell functions that all patients are potentially eligible for.

In 2012 It was detected seven days after my Whipple that I had metastatic disease to the liver. So cure was no longer attainable by the Whipple. I was single and had responsibilities for caring for a house, paying a mortgage, and in the middle of a very contentious legal battle with a home construction contractor who I had to counter-sue. It was constant stress, aggregation and anxiety as the legal costs were $238K plus having to higher another contractor to correct mistakes and finish the job costing $110k. It took 5 years, seven months and $348K to win the case for which I received payment covering legal fees and the court judgment.

I was now fighting two major battles simultaneously. I took a few deep breaths, meditated and cleared my head and then set about formulating an action plan to deal with all the adversity and challenges. I wasn’t going to let my investment in going through Whipple surgery and post surgical treatment go in vain. The decision was made…this set-back would be dealt with. First I advocated for more aggressive chemo, then genetic testing was done detecting a mutation. That was helpful in searching for a clinical trial that took 14 months to find.

Treatment was every 15 days requiring commuting by train and subway requiring a 4 hour 20 minute train, subway and walking commute. I had this same daily commute as I worked all through my chemo treatment that was given at the same place I worked in clinical cancer research. My care team never told me what my estimated survival was. I never asked and they never volunteered. Years I got the courage to ask and was told 12 months with chemo.

When my chemo started, convention wisdom was cure was not possible by chemo and I was initially put on palliative care. That’s when I started my advocacy to change who patients are perceived and treated. Not only did I achieve No Evidence of Disease at the end of 24 months of chemo, I enrolled in a trial for maintenance monotherapy which is an oral tablet with no debilitating side effects. I am a 12 year survivor that is thriving. I feel as good as I did before onset of illness and thriving.

everything is not easy in life. I learned to deal with adversity and the challenges I faced. I didn’t fear treatments which were well managed by my care team with anti-emetics and anti-diahhreals that I took proactively rather than waiting for the onset of symptoms.This approach made it easier getting through treatment.

Hopefully you can convince your friend to do a reset on his outlook and understand this set-back can be overcome.There are options. I remember walking to the medical center from the subway every day for my work as well as chemo. I encountered people also going to the medical center who were in horrific accidents, patients that were quadriplegic or had lost limbs, were bling or suffering from ALS. I would look at them and think…they did give up. I had it better than them and I had stage IV pancreatic cancer. Those patients inspired me with hope and a will to live.I learned to practice gratitude and thankful for everyone on my care team and every day opening my eyes, getting out of bed and being productive.

One never knows how strong they are until strong is the only option.

So well said.

I just pressed the "Like," "Helpful," and "Hug" buttons on @stageivsurvivor 's post above, and would hit the "Thank you" and "High-5" buttons as well if the forum software offered them.

I'll save the spiritual aspects for another time/thread or my profile page, but my experience of working a stressful full-time job along with a post-Whipple chemo commute was similar to @stageivsurvivor 's, and similar to @mommacandy 's in being piled on top of the primary caretaker job for my dad (an hour away) during his simultaneous battle with mesothelioma.

I wanted to add here some info that might be helpful in finding clinical trials. Our understanding of cancer genetics (personal/germline and tumor/somatic) have led to a number of "tumor-agnostic" treatments -- they're less concerned about the organ/origin of the tumor than they are about mutations in any type of tumor that might be targetable by a specific agent or delivery method. The BRCA1/2 and PALB mutations being targetable by PARP inhibitors are a prime example of that.

The KRAS mutation family (especially G12C and G12D) are a driver of most pancreatic cancers. The rapid expansion of trials related to these (and the RAS pathway in general) offers new hope.

Unfortunately, searching based only on mutations sometimes limits patients/caregivers and healthcare providers to looking only for trials that target a specific mutation, to the exclusion of many other possibly helpful trials.

More comprehensive blood/tissue and genetic/IHC testing can may reveal other conditions that are targetable by other treatments, such as anti-cancer vaccines, TILs (Tumor Infiltrating Lymphocytes), CAR T-cells, CAR NK-cells and more. These are often based on engineering/customizing a stem cell to target some other property of the tumor cells (such as expression of CEA, Claudin 18.2, TROP2, etc). These trials are harder to find by the average layman searching the NCT site and even for some specialist MD's not aware of developments outside their own network.

First I would make sure you have connected with a case worker / advocate at PanCan.org; they can help with a lot of the trial searches and pay for some types of blood/tissue testing as part of their "Know Your Tumor" program.

Next I would inquire about getting ALL the advanced testing (Next-Gen Sequencing and IHC) you can have done on tissue and blood so anyone helping you knows what they can search for. PanCan.org can arrange to pay for a lot of the testing at Tempus Labs if your doctor orders it. Again, ask your doctor for EVERY test under the sun that can be done in one shot. That will help you evaluate all your choices in parallel rather than a long, serial whack-a-mole approach.

Some of the appropriate trials may not register with the people at PanCan.org, so you could also register with cancercommons.org ; they also offer help with trial searches. Both will want to collect all the relevant testing info you can provide to help them narrow down what's most relevant.

If you get the testing done at Tempus, they also provide a list of trials they can find related to your test results. If location is an issue, as it often is, they have a network of sites which can open a "Time Trial" (as they call it) where certain cancer centers closer to you can open a 1-person trial just for you, piggy-backing on the ongoing trials from another site in their network.

Those are the most "generic" and widely available, consumer-friendly sources I know of, but they are often not aware of newly developing trials at single-center sites. You would do well to contact the centers of excellence directly since they might "see the connection" between a trial they have open and the specific disease/condition that outside searchers might not see. They might also know of trials that are about to open but don't yet appear on the public websites.

Direct contact by phone, email and website (plus doctor referral if you can get one) with the centers of excellence would also help. The biggest "clinical trial machines" seem to be:
- MD Anderson
- Johns Hopkins
- Mayo Clinic
- Memorial Sloan Kettering
- City of Hope
Hopkins is probably a good first choice for you based on proximity to Virginia.

Other networks might have trials open at locations that don't show up near you on a national search. For example, US Oncology Network and Sarah Cannon Research Center have corporate HQ in Texas and Tennessee, respectively, but have remote sites in many parts of the country where a trial not listed might still be available.

Finally, there are various laws with nuances that might help. Florida had passed a "right to try" law before the US federal government added their own. Tangential to that, the US FDA also created an "expanded access" program. All are intended to make potentially live-saving drugs, treatments and devices available to patients with no other realistic option. They are in a sort of "compassionate use" category which waives some of the legal restrictions on access. It doesn't guarantee that anyone will provide them or pay for them, but removes hurdles from using something you might have access to. There may still be hurdles to clear with the IRB at the institution providing your care, but even the IRB might not be aware of how these laws can simplify the process for them. Given the complexity of navigating these channels in a timely manner, I recommend reaching out to the larger centers mentioned above. They usually have more awareness of trial options and processes than smaller centers or even highly motivated patients can navigate.

I hope this is helpful to you or to someone. It's a lot, but so is the beast we face.