Edit: title should say “NO” not “NOW”

I was diagnosed with pancreatic cancer in July of 2015, and classified Stage IV in October of that year. I underwent a distal pancratectomy and splenectomy followed by chemotherapy and radiation (with more chemo) over the following 18 months. I had no evidence of disease from January 2016 to April of 2018, when a recurrence was found on my liver. In September I had a liver resection and have been doing more chemo to try and wrap things up, and things seem to be going alright.

Through my journey I've tried adjunctive therapies which I feel were helpful with symptoms if nothing else. I've also worked hard to ease my fear of death and physical disability. I'm happy to talk about most anything! So please feel free to ask.

Proof

Edit Edit: OMG Thanks for the Platinum and Silver! This has been so incredible, you’re all amazing! My chemo has been merciful and I’m still here typing away! I’m seriously trying to address everyone’s questions because people seem to be really enjoying this, myself most of all. If you’ve shot me a DM those are my last priority RN and I might not get to you until tomorrow. <3

EDIT EDIT EDIT: STILL HERE STILL SLAMMING OUT REPLIES STILL SO GRATEFUL FOR MY NEW MEDALS!

Edit 4: I’ll still be around to respond, please feel free to reach out. This has been a blast, if you want to follow along with me I post most frequently on Instagram @joey_reubens

Comments: 1218 • Responses: 86  • Date: 

Alpinestarhero3139 karma

You're BEATING pancreatic cancer?

Fucking high five mate.

So all the things you wished you could do but never got round to doing, what are they and when will you do them?

Joey_Massa1204 karma

I like surviving, I try not to give myself too much credit. Haha.

Oh man, I’m doing pretty good on my bucket list, I’ve lived most of my life trying not to set expectations and just embrace the experiences I get. That being said, I really want to travel more, and I’m always trying to push my physical and mental comfort zones to make myself a bigger and better person. When will I do them? Right now. Start today, whatever it is, take that first step. Even if it’s only making a list of what I want to do.

StumpyWombat13945 karma

Dude. I am currently fighting a terminal cancer. I got really sick at one point and was given 2 months to live. Here I am a year later traveling and giving my all towards life. People need to do what they want now. You may never get a 2nd chance to travel, live big and love big so do it now anyway.!I’m so happy for you kicking ass.

Joey_Massa64 karma

Keep fighting the good fight friend! I hope you’re in the best place you can be physically and mentally! Feel free to reach out if you ever want a peer to chat with.

StumpyWombat1372 karma

Thank you. I greatly appreciate that :) I am currently running around Universal Studios in Florida having a fantastic time. Mentally I couldn’t be in a better place. I hate to say it but the big C sucks, but I’m so completely happy. More than I ever was before it. You’d never think it but smiling and living everyday like it could be your last, really makes you a much better soul.

I wish you many adventures :)

Joey_Massa28 karma

I’m glad to hear that! Here’s to more adventures for you as well compadre!

Avium1036 karma

...got another CT scan showing now evidence...

Was that supposed to be "no" or "new"? The answer will change my feelings on this post.

Joey_Massa632 karma

“No”! Hah. Thank you for the catch.

no_soup_4_u2377 karma

Glad you are beating the odds. I can sympathize, I have had breast cancer 3 times the last time at stage 4 with a spot on my liver. My type of breast cancer is very aggressive its called triple negative and It’s hereditary, my mother died from breast cancer. How are you dealing with the side affects of the chemo? Hope you live in a state where you can get medical marijuana it helped me a lot.

Joey_Massa256 karma

MMJ has been essential, I live in Seattle so I’ve got some good options ;)

MMJ is the most helpful thing, though mindfulness and meditation have also helped me accept my symptoms both acute and chronic from treatment.

Good luck to you and your journey with cancer!

xouba32 karma

First of all, huge congratulations on beating cancer. I've got too many close people die of it. I'm very happy for you and your family, which I'm sure has suffered a lot too.

Now the question: do you recommend any special technique or reading about meditation and/or mindfulness? I'm going through some rough times right now and could use any help.

Joey_Massa68 karma

As another commenter mentioned headspace is cool. I personally found Headspace to be a bit... "dilettante", their program let's you jump around to different foci and I found it hard to progress on "mindfulness"

I've started using Sam Harris's Waking Up app (I know he's intellectually dicey, don't worry, he also has some interesting opinions and has spent a -lot- of time studying secular Buddhism)

Free options are "Oak" which is a great app that I use for unguided Meditations or their loving kindness meditation. (not a huge fan of their "guided" meditation). There are also a host of podcasters who post guided Meditations, Tara Brach is my favorite of these.

PoorlyLitKiwi24 karma

I lost my grandpa to pancreatic cancer at the end of last year. He was given just a few months to live a couple years earlier, and was wasting away after the chemo killed his appetite. My grandparents had always been very against drugs, but he decided to give medical marijuana a try since nothing else was helping. It added so much time and quality to his life, and he was able to out back on much of the weight he lost. Truly incredible to see the impact it had. Here's hoping it gets legalized nationally soon

Joey_Massa5 karma

I’m so glad he was able to ease his symptoms! Sometimes I legitimately break down and cry when I’m feeling bad not because of how bad I feel, but how I can’t imagine how much more unbearable this would all be without medical marijuana.

I hope y’all got lots of time together, my grandfather passed away last year and I cherish every memory I have with him, though I always wish I had more.

thelegend271z12243 karma

It's ok if you don't want to answer, but how do you deal with fear of death??

Joey_Massa597 karma

Mostly by practicing stoic philosophy, which is a rabbit hole I can go down but won’t unless anyone is specifically curious.

Essentially the biggest help with stoic philosophy is the acceptance that death is something we all face, and that none of us live relatively long at all, so enjoy -any- experiences you can while you’re here and don’t worry so much about when or how it ends.

Mal_Fet69 karma

I just finished Meditations last month. What other Stoic writings do you recommend? What's your favorite?

Joey_Massa145 karma

From the classics, Seneca is my absolute favorite. He writes about the most diverse span of subjects and in the most depth (imo) he also tells jokes and I think it’s really cool that we can “read into” his relationship with Lucilius through his Letters.

For modern writers, Frankl’s “Man’s Search for Meaning” and Jim Stockdale’s “Courage Under Fire” are amazing. They’re both practical applications of stoic principles in trying situations (Internment camps and being a POW during Vietnam respectively) I am also a fan of Ryan Holiday’s “The Daily Stoic” I feel it’s a good “program” to try and practice regularly which is essential to stoicism.

bg-j389 karma

I need to check out Stockdale's writing. My only real knowledge of him is from being Perot's VP pick and the disastrous debate where he was roundly ridiculed. Just read a bit on his background and had no idea he lectured at Stanford for instance. Thanks for the recommendations!

eatonmoorcock20 karma

I put one of Stockdale's essays online so people could more easily access it. Enjoy.

Joey_Massa8 karma

Ooh! Thanks for sharing! He was an incredible American.

teapotsneedcosies17 karma

I'm curious as to how this has helped. I'm having a tough time emotionally at the moment. Finished treatment about 6 months ago, but the emotional weight/trauma of diagnosis and treatment is really hitting me now. And I also have NED

I get intellectually the stoic philosophy. But I'm not sure how it helps in the moment when you feel sad, scared etc.

Joey_Massa77 karma

So the “in the moment” work is where stoicism really comes into play. For me my practice of mindful meditation has been really crucial for progress here.

Here’s how it works for me, maybe my sharing will give you some insight. Last night I woke up at 3am in a full blown panic attack. After gaining some control I focused on “square breathing” which helps calm your body and mind (google it if you’re curious). I then reminded myself that tests don’t make me sick, they just give me information. Further, if my disease has returned, my worrying about it only harms me and my efforts to treat it effectively. The short answer is that it takes a -long- time of “forcing” yourself to examine the logic your mind is using. It can be helpful to start with small things, instead of trying to start with “Conquering my fear of death” think about how loosing your favorite shirt or nicknack might upset you. Did losing that item really harm you? Or was it’s (and your) existence in that state always going to be inpermanent, and that maybe it feels better to be grateful for the use you did get from it. Or, if you loose a relationship, you were alive and functional before that relationship, all that you’ve done is gain experience from that relationship, and now that it’s over have you really lost anything? Or just stopped having that particular experience/relationship. These anecdotes are my digression/interpretation from some of Seneca’s work.

I’d also suggest William B. Irvine’s “A Guide to the Good Life” as a great starting point. Most classic stoic writings were about as far from a “curriculum” as you can get (Epictetus and Musonius Rufus being exceptions) so it can be difficult to feel like you’re getting traction. I would take Irvine’s work with a grain of salt however as IMO he waters down some core stoic principles that are essential to its effectiveness as a practical philosophy. Also, Ryan Holidays works can be easier to digest.

teapotsneedcosies23 karma

Thank you so much for taking the time to write out that, and to help a fellow traveler.

I'm going to take the time to really try and digest your words and follow up some of your suggestions.

Peace to you .

Joey_Massa3 karma

Of course, I hope it aids you, feel free to reach out if you want. I’m all about supporting other survivors!

thelegend271z1211 karma

I'm seeing stoic philosophy everywhere lately. What books do you recommend as entry points?

Joey_Massa6 karma

Replied to the above comment, let me know if I can add anything for you!

Smulli364 karma

Check out r stoicism

Joey_Massa11 karma

Oh, I’m there on the regular. Trying to participate more and be a better stoic. :)

sssyjackson35 karma

Not OP, but cancer survivor here: Xanax.

And if all else fails, pretend it's not happening.

But I'm not sure I dealt with that in a healthy way. But if I was about to drop dead, I wanted to be happy, and gave no fucks whether I was mentally stable.

Joey_Massa14 karma

I’m super glad you shared this! Don’t let anyone shame you for getting yourself the care you need. It’s not much, but I’m proud of you.

LietenantPMitchell189 karma

I work in oncology clinical trials, have you been offered any other options beyond standard of care?

Joey_Massa205 karma

More or less, there are less than ~200 cases of Acinar cell carcinoma a year so there is no standard of care. I've had both of my resected tumors genomically analyzed and my Oncologist didn't find anything that would be helpful currently.

I'm something like 95% unlikely to be helped by immunotherapy.

takethebluepill111 karma

Sounds like you're doing a lot to help the science, even if it's hell to go through. I'm a stage 3 cancer patient with the BRCA-2 mutation so there is still not much known about the correlation. Hopefully, our troubles will help shed light on new pathways for future patients. I'm proud of you, man. You're an inspiration

Joey_Massa50 karma

Thank you so much. I just try to do what I can with the tools I have. I wish you the best of luck.

It's a fairly good time to have cancer all things considered I suppose.

wernox18 karma

So its not the more common adenocarcinoma that attacks the "head" of the pancreas?

My father-in-law had an islet cell neuroendocrine tumor that was treated with the distal pancreatectomy/splenectomy about 8 years ago. He made it a couple of years before he was a 100% insulin dependent. Drove himself to the ER with a 1400 Blood sugar.

Joey_Massa7 karma

Correct, my type of pancreatic cancer is the rarest (to my knowledge) of pancreatic cancer.

Come_along_quietly117 karma

Nice. Beating pancreatic cancer! What’s next? A mountain lion while you’re out jogging?

Joey_Massa52 karma

Maybe a fast move and a quick stop. Ive never been a big risk taker but I do feel less afraid of the random ways my life might end.

babybopp4 karma

op, hijacking this to say to you.. my dad got pancreatic cancer and lived for 13 years after having his gall bladder, pancreas, half his stomach, intestines removed as the cancer had metastasized. in the end it was not even the cancer but an opportunistic infection that killed him. so you can live years...

Joey_Massa3 karma

That's what I'm going for! It ain't over until the skinny dude croaks.

pike130289 karma

What were your symptoms leading up to your diagnosis?

Joey_Massa139 karma

Most of them were not realized until after diagnosis but I'll digress. What literally got me diagnosed was that the mass on my pancreas had grown go the size of a softball and was palpable on my abdomen. It felt like a hard bump just under my rib cage.

In hind sight I had the typical GI issues (stool irregularities and stomach pain) as well as some severe back pain that had increased persistently, as well as loosing weight over the 6 months before diagnosis.

NYKWHY78 karma

[deleted]

Joey_Massa316 karma

Whenever I get testing, it helps me to remember that all the tests are doing is giving me a clearer picture of what’s going on. Whatever is happening is already happening, the tests are just helping me address it. I hope you get helpful results friend.

heylookmatt90 karma

This is really great advice for dealing with anything healthcare-related. I feel like some people are anxious about going to the doctor/dentist/whatever because of what they might find, but it can only give you a clearer picture and understanding of what's going on with your body/mind/whatever.

Joey_Massa39 karma

Exactly!

that_random_Italian20 karma

what tests did they do to catch it? I've felt like i have pancreatic issues based on my symptoms. Ive address them with 2 doctors. I've done blood work and CT scans and nothing has shown anything but a part of me is still worried i have something.

Joey_Massa19 karma

Both CT scans and blood work see how my disease is monitored/was discovered. PET CT scans can point out cancer more directly.

That being said, from my knowledge (not a bloody doctor, nowhere near an expert) CT and Blood work should be a pretty solid yes/no for you.

You could be experiencing acute pancreatitis, which you can help through diet mostly.

PROCRASTINATORRRR14 karma

We learned in medical school that often times pancreatic cancer is caught too late, happy to see this wasn't the case for you 😊

Do you mind sharing details of the surgery? Is your superior mesenteric artery still functional? I'm fascinated by this type of stuff

Joey_Massa13 karma

Technically speaking it was very much too late, ideally they’d have caught it as Stage I or even a precursor.

I’m not super clear on a lot of the technical details but I’m happy to try and answer specific questions. I’m pretty sure that artery is still functional, I don’t believe it had been infarcted yet. That being said, I did have a splenectomy because the vein that comes from your pancreas to your spleen -was- infarcted and my spleen as partially necrotic.

Jslimmons8 karma

Also live in Seattle :) Did you ever have any doctor visits with non-diagnosis early on? Like a blood test that came back normal? I've had an uncomfortable tightness for about 2 months now in my upper right quadrant of my abs (right on the edge of ribcage) that the doc initially thought was costochondritis after an X-ray and blood tests came back normal. But it doesn't' seem to be getting better. Anyway thanks for sharing your experiences here, and I'm glad to hear you're doing better, friend.

Joey_Massa20 karma

I went to my GP a few times to try and address symptoms that turned out to be from the cancer, so yes.

My suggestion would be to be patient. I know it's scary and unsettling, in a few other comments I talked about how I've been told cancer pain is "novel, persistent, and progressive", most cancers progress over years not weeks or months. So as I've said before, being your best advocate is the best you can do. Communicate with your doctor's, if these things persist or progress be sure to point out the time and differences been experiencing these things.

Hope that helps, feel free to DM me if you have more specific questions.

JohnnySmallHands5 karma

What kind of stool irregularities does PC cause?

Joey_Massa6 karma

Yellow/orange stool, diarrhea, fat in stools, mainly.

CockBlockDoge71 karma

Lost my grandfather to the same thing last June . He always talked about how food he used to love the taste of had become tasteless or even rotten smelling to him. Have you experienced anything like this?

Joey_Massa131 karma

Hm, tasteless yes, rotten not so much, though some things are more pungent like alliums (onions, garlic). My understanding is that different chemotherapies affect taste differently.

One of my weirdest symptoms is water feels “syrupy” and that makes me not want to drink it, which is lame because hydration is important.

You-and-whose-Army47 karma

Congrats, OP! How are you feeling today?

Joey_Massa82 karma

Im feeling pretty darn fantastic. I'm getting chemo as we speak so I'll feel tired and Flu-ey for the next week or so but I'll take what can get :)

rikkirikkiparmparm15 karma

How much longer do you have to do chemo? Do you have any plans for what you'll do once you're done?

Joey_Massa63 karma

My last treatment for this round will be on the 19th. My wife and I live on a boat in Seattle and I’m currently planning a trip to the San Juan Islands for my parents and us. I’ve also got some other big plans in the works but that’s a story for another AMA.

rikkirikkiparmparm11 karma

Wait, doesn't chemo make you really nauseated? Wouldn't living on a boat make that worse?

Joey_Massa51 karma

Well, we're moored on a lake, so it's a gentle rock at most, plus I don't really get seasick.

Also, I use a metric ton of medical marijuana and other anti-nausea prescriptions which keep everything under control for the most part.

CryptTheWarchild14 karma

Not everyone gets seasick.

Joey_Massa23 karma

Correct, I've never gotten seasick. Though I've heard that eventually everyone does experience seasickness. If that's the case, I've got plenty of practice in the whole expulsion and nausea department. 😂

samb81134 karma

When is the next time we can split a case of Busch light like back in college?

Seriously though, just knowing how long you’ve been through this is, as well as beating the odds has been truly inspirational.

Joey_Massa54 karma

Oh Lordy, the missing chunk of my liver says mayhaps never. I’ll keep you company and smoke my fair share of joints though!

Thank you, I’m just doing what I can to make it by in the best way I can, if I can aid other people along the way then that’s pretty incredible.

Joey_Massa20 karma

Oh Lordy, the missing chunk of my liver says mayhaps never. I’ll keep you company and smoke my fair share of joints though!

Thank you, I’m just doing what I can to make it by in the best way I can, if I can aid other people along the way then that’s pretty incredible.

kiol2179 karma

Man that missing chunk likes to repeat itself

Joey_Massa23 karma

Yeah, IDK what happened there, blame it on the hospital WiFi.

Joey_Massa15 karma

Oh Lordy, the missing chunk of my liver says mayhaps never. I’ll keep you company and smoke my fair share of joints though!

Thank you, I’m just doing what I can to make it by in the best way I can, if I can aid other people along the way then that’s pretty incredible.

Joey_Massa15 karma

Oh Lordy, the missing chunk of my liver says mayhaps never. I’ll keep you company and smoke my fair share of joints though!

Thank you, I’m just doing what I can to make it by in the best way I can, if I can aid other people along the way then that’s pretty incredible.

Joey_Massa15 karma

Oh Lordy, the missing chunk of my liver says mayhaps never. I’ll keep you company and smoke my fair share of joints though!

Thank you, I’m just doing what I can to make it by in the best way I can, if I can aid other people along the way then that’s pretty incredible.

artistonduty25 karma

Happy for you! That is great news. What is something you want to tell us that has nothing to do with what you are going through?

Joey_Massa77 karma

If you’re facing an issue, even if it feels overwhelming (like, it’s literally killing you), if you can take a step back from the feelings it gives you, you can turn mountains into mole hills. We all have a “biggest battle” in our life and we can all make that as over, or underwhelming as we want, it may not be as hard or easy for you as others, but you can get there.

That, and if you’re finding that you’re surrounded by friends who are unhelpful or even hurtful, -you- need to take ownership of maintaining contact with those people. I’m a strong believer that we’re the average of the 3-5 people we associate with most, if you want to be a better person, be one, and associate with people you look up to, not who you want to look up to you. (Sorry if the verbiage here is a mess, I’ve got a lot of questions I’m trying to get to!)

oooriole0925 karma

That’s absolutely fantastic. What was the best thing(s) that people said to you as you were going through your journey? What encouraged you? I always feel like I can never say enough to people who are going through the same thing.

Joey_Massa60 karma

Oh! It actually just happened this weekend. A friend I made recently literally just thanked me for the time I spend with him and that he can only imagine how valuable my time is. No one had thanked me for my time previously, and I am vividly aware of the fact that time is my most precious asset.

Encouraging things are: people who care enough to ask, people who make an action they perceive as offensive to me and caring enough to apologize (making a comment on my weight without realizing I’m on chemo for example), days when I can go to the gym, snuggling with friends when I feel crummy, kisses from my doodle, how hard my wife works for me, and how much she cares about me. Honestly, waking up in the morning. Proactively, meditation and practicing stoic philosophy.

a_kindness_of_ravens19 karma

Asking as someone who has had to give this diagnosis, what can we do better to inform and support you? How can medical providers make this easier, gentler, and give you what you need?

Joey_Massa9 karma

Boy these have been the hardest questions but the ones I want to be most helpful for. To me it’s always felt like my oncologist tries to give me what’s absolutely necessary, while encouraging me to ask my own questions, but he tends to not share some kinds of details unless he’s asked, like prognosis, and whatnot. Honestly this feels hard to answer in part -because- my oncologist is so good to me.

Some of the second opinions did a poorer job. At the research hospital I went to I feel like I was just another cog in their scheme, which makes sense but wasn’t a good fit for me. I also saw a younger doctor who told me “there’s no standard of care for your disease, come back in 3 months for a follow up CT” I have no kind words for his methods.

Really, one of the biggest differences is that my relationship and interactions with my oncologist seem genuine, it feels to me, and makes sense, that oncologists would create a degree of separation from their patients, but the “chemistry” I have with my doctor means almost as much to me as his treatment plans.

Please let me know if I can answer anything further, I’m so grateful for the work you do and want to help in any way I can.

LDHarv19 karma

Firstly, wow and well done! So pleased for you and keep fighting. Is there anywhere we can donate towards treatment or anything like that?

You look quite young - how old were you when you was diagnosed? I found this via instragram as I was searching as I’m currently having a really bad health anxiety worry about pancreatic cancer. My GP’s have said it’s nothing to worry about, my family have and many people online as well have said it’s nothing to worry about (abdomal pain/discomfort left side, some mid/upper back discomfort and acid reflux - about 7 weeks now). However, your reply above saying not to worry unless it was “progressive, novel and persistent” that actually helped me a lot tonight (as my symptoms are on/off and vary) - so even though you didn’t mean it, you really helped a health anxiety sufferer tonight. Thank you so much.

God bless, keep smashing it and let us know if we can help.

Joey_Massa24 karma

There is a place you could donate but I won't share it here as that's not why I'm here.

I was 25 when I was diagnosed. My oncologist says my cancer likely developed in my youth/teens. I'm glad my experience has been helpful. I think you got the point, just be the best advocate you can be for yourself! If you get -really- frustrated and your GP is not being effective, sometimes getting a second opinion can be helpful, just don't let it become a rabbit hole you can't stop going down. If that all checks out.

I hope you're well physically and that nothing weighs on your mind too heavily.

fbgm051618 karma

Having been diagnosed with stage 4 cancer, typically a very bleak prognosis, what gave you the strength and motivation to fight?

Joey_Massa11 karma

I really appreciate the other comments here but will ad my two cents as well.

I if you want to call it strength and motivation, I think in my case it comes from a few sources. Firstly while I’m a American white dude, I haven’t had the easiest upbringing, experiencing homelessness among other things, so I’ve always faced challenges to my personal progress. My father helped me learn that challenges are how we grow, and addressing them in a way that doesn’t degrade you as a person is the only way to be successful when facing those challenges, wether you literally win or lose, live or die. We all die, we all suffer, we all have choices to make, it’s the differences we can make in our own lives and in other that matter IMO. That’s my motivation & strength, I know as long as I am on this planet, interacting with my fellow human beings in a positive manner, that I’m doing the absolute best I can. Some day I’ll leave this planet/plane/existent and either poof or go on to what’s next in the meantime, right now is all I’m guaranteed, so even if all I get right now is a mouth full of chemo vomit, that experience is unique to me and my existence here, so I should embrace it as what it is, more experience & sensation.

Someone mentioned not feeling brave or strong, I agree with that. I didn’t have any option in this, I just have to keep making my way as best I can, especially when I feel tired, beaten down, like crying, and like giving up. To me, this is what being human is all about, not the bad times, not the good times, just the times and what we can do with them.

Definitely still working on loving acceptance of my chemo vomits though.

Lenz1218 karma

Weird question i know, but do you know if samples from your rare tumor may be available for researchers?

I would love to get my hands on it, could provide some key clues on the role of Acinar cells trans-differentiation in the healthy pancreas.

Joey_Massa16 karma

It should be, if you shoot me a DM we can talk further! I’d love to help in any way I can.

Mal_Fet17 karma

My dad just finished treatment. His case is far less serious than yours, but I never know how to talk to him about it. Like what to say, what to ask. What have you heard way too much of from friends and loved ones? What do you want to hear from them?

Joey_Massa27 karma

That’s a tough one as it’s highly individual. What I will say is that for me, a lot of time people think it’s helpful to avoid talking about cancer. Sometimes that’s true, but most of the time cancer is the biggest thing I’ve got going on, and no one wants to talk to me about it. Consider maybe you don’t like your job, maybe even it’s extremely hard to relate to but I bet it’s helpful to blow off steam even if you’re a rocket scientist and your best friend is a janitor.

In short, ask questions, be there, be open, listen. Offering a way you can help also makes a big difference. When you’re facing the kind of adversity that cancer causes it can be difficult to even know what to ask for. So it’s so amazing when someone says “can I bring over food tomorrow?” Or “can I come over and watch Netflix while you nap tomorrow?” Or receiving a card in the mail.

TheVishual211312 karma

5 year survival rate is what like 1 percent? I hope you keep it up. My mother died of stage iv pancreatic last year and it's nice to see people win.

Joey_Massa7 karma

At least 5 times that! I’m sorry for your loss friend. I’m on reddit fairly often if you want to chat.

tricksovertreats11 karma

The 1 year survival rate of this type of cancer is 24% and 5% for 5 years. You seem to be beating the odds and I wonder what crazy adventure you have in mind to celebrate life and say Fuck Cancer?

Joey_Massa12 karma

Oh yeah, a few. Set some reminders for later this year if you’re really curious. I’ll be sharing my experiences on reddit.

killyourmusic10 karma

My mother died from pancreatic cancer on Saturday, February 2nd. We only found out she had cancer on Monday, January 28th. She was dead five days later.

How have you been able to survive?

Joey_Massa8 karma

TBH, I can’t say for sure. I’ve spoken about the treatments I’ve gone through suggested by my oncologist as well as adjunctive therapies I’ve added after consulting my doctor. Please check those comments out and LMK if you have more questions. I’m so sorry for your loss, I hope it’s as easy as it can be for you and please reach out to me privately if you want to talk to someone, I’m not dead but I’ve been pretty close to it for a while and am happy to help in any way I can.

imnidiot9 karma

Thats amazing! You dont hear many pancreatic survivor stories! I had a Whipple to remove a pre-cancerious cyst on my pancreas in May of 2018. Hope you continue to recover and stay cancer free!

How are you coping with the diet after the pancratectomy? The modified diet I had to get used to was tough, cant imagine what a total would be like. Though they do say it is different for everyone.

Joey_Massa6 karma

It was tough after surgery especially but I take enzymes and can eat most things these days, though somethings are much more obviously upsetting to my GI tract... haha

Thank you for sharing your question and kind thoughts.

Ketoriginal6 karma

[deleted]

Joey_Massa5 karma

Nah, he had plenty of free agency back then. Not my monkey, not my circus. Thank you, also. :D

cammykiki6 karma

Amazing, congrats! My mom had a stomach ache, went to the doctor, next thing u know we’re being told she has pancreatic cancer and only has 6 mos to live..and sure enough she passed 6 mos to the day.

Which one intervention do you feel contributed most to your success? Were you in any clinical trials? Was your chemo a standard treatment or did your MD try something innovative?

Joey_Massa3 karma

I think that my medical cannabis usage has been a huge factor, I’ve spoken to it at length in a few comments here. Important to note that this is just my opinion, and I used medical marijuana -in conjunction- with recommended treatments, not instead of.

There is no standard care for my cancer as it is so rare, so my MD did indeed make a “custom” treatment for me, it’s essentially similar to the way they treat some other GI cancers. He used empirical evidence from Acinar cell studies, his own empirical experience, and genomic analysis of my tumors to create my treatment regimens.

I haven’t undergone any trials yet, but if/when my disease progresses I will very much be going down routes that seem helpful.

ohlalameow5 karma

Damn dude that's fucking awesome!!!! My dad just got a clear scan after beating Stage II, and we thought that was insane. Here's to a full, happy, healthy life!!!

Will you have to do maintenance chemo for life? Or will you eventually get to get off of it?

Joey_Massa6 karma

I'm not sure, my oncogist and I are going to discuss my next steps at my next appointment. I will live with this disease or its effects for the rest of my life though, so the short answer is only time will tell. I tend to be rather persistent though, so I'm still betting on me.

hyssna5 karma

It's amazing to read that you are cancer free! My father died of pantreatic cancer when I was 11, back in 2001, keep on fighting! I wish he could have lived longer, but I'm happy to see treatments are going forward.

What your biggest worry was when getting the diagnosis?

Joey_Massa8 karma

The pain it would cause those who cared about me. Still is. I deal with pain and disruption to my life fairly well, I have trouble knowing that I impact people who care about me negatively though. So, thinking about my wife or parents feeling existential distress over my death is one of my biggest struggles.

Ross66614 karma

What was your first thought after being told there's no evidence of cancer?

Joey_Massa3 karma

HOLY SHIT

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Joey_Massa8 karma

Guppy19853 karma

Congratulations, so pleased for you!

My Dad has recently been diagnosed with stage 4 pancreatic cancer, which has spread to two small dots on his liver as well. Are there any particular treatments that you found worked in your case? He has been on the first round of chemo which didn't work unfortunately, so might be trying a different type. Do you know which type worked for you? We were also told that immunotherapy only has a 5% chance of working, and I'm really scared that he will have a different outcome to you. Any help or advice you can give would be hugely appreciated, many thanks!

Joey_Massa8 karma

My first chemo regimen was GFLIE and I'm currently on FOLFOX, his oncologist should have more info on those.

Things that I did IN ADDITION to treatment (not INSTEAD OF) are: taking full extraction Cannabis oil up to a gram a day (look up RSO Protocol, and please reach out directly if you have questions) which could have an effect on the cancer, but in the very least is the most effective way I control my symptoms. I've also been experimenting with putting my body into fasting/ketogenic States (having doctor supervision is especially vital here) keto has actually been really helpful for dealing with energy levels. I'm also a big fan of turmeric both in it's natural form used in teas and foods, as well as theracumin or cucermin w/ piperine or other additives that aid bioavailability.

On a less physical/liter level, coming to terms with my diagnosis and accepting it's likely outcome has been tremendously helpful for my mental state. I've already beaten that drum a bit here so I won't expand too much more but if I can support you or your father in any way please DM me I'd be glad to help.

CunnedStunt3 karma

How rare is it to survive Stage 4 Pancreatic cancer? I had heard that most people who get diagnosed with Stage 4 have very low survival rate.

Joey_Massa5 karma

Acinar cell specifically is harder to quantify as it’s so rare, but it’s 5 year mortality rate is definitely higher than 90%..

4Someonesmom3 karma

Do you have a GoFundMe account? My stepfather, one of my most very favorite people, has been gone for 7 years now. He was an amazing man til the end. Very brave, would tell us he was bulletproof, I called him Super Man. He adopted the "Fuck It" mentality and wanted to do everything! His biggest dream was to have a motorcycle, rode when he was younger. My mom wouldn't let him buy one because they were dangerous. One of the greatest memories EVER is the day he unwrapped a leather jacket and a key with a Harley keychain. When asked what it was for, my husband and I led him out to the driveway. It was a beautiful moment and worth every penny.

I would love to help you do everything that you want to do, in any way I can. You're amazing. FUCK CANCER!

Joey_Massa5 karma

I appreciate everything you shared so much. I do have a GoFundMe, but I’m not here to share that, I appreciate your desire to contribute but I came here to give information and support, not to receive contributions. Again, thank you for your kind thoughts and words.

Poppintool3 karma

Glad to hear things are looking good and wishing you both a speedy recovery and no more cancer!!! On the physical side, are there any long term side effects of the treatments/ surgeries you’ve undergone or will you be able to live like you did before? Also, on the mental/ emotional side, has this experience changed how you view, live or approach day to day life in general?

Joey_Massa14 karma

My surgeries have definitely impaired my ability to digest food and therefore my energy levels even when I’m at my best. Both of my tumors which were excised were also wrapped up in nerves so I have a lot of pain/sensation changes in my abdomen. My immune system has definitely been impaired by all the chemo/radiation we’ve been blasting it with.

Mentally and emotionally the first two years were really tough. I worked hard to meditate regularly and practice philosophy and both of those have helped me shift my perspective on mortality and fear of death. In a way it’s helped me focus more on what’s important to me personally, what actually hurts me personally, and the ways I can actually affect the things I control in my life.

So in general day to day, I just try to be grateful for what I do have, and thankful for the experiences I get even when they’re trying. Perhaps most importantly aware that we’re all rather mortal and none of us have long, so enjoy it while it lasts. Even if “it” wasn’t what you were hoping.

Crono_Aurion3 karma

What is the weirdest side effect to chemotherapy that you've experienced thus far?

If you could give advice to someone who thinks they might have symptoms/telltale signs of cancer (other than don't trust WebMD), what would that advice be?

Joey_Massa38 karma

Weirdest symptom... probably peripheral neuropathy. Essentially some platinum based chemotherapies damage your nerve endings when they get cold. So for a few days after chemo if I touch something cold it feels -super- cold and something like a icy-hot type cold. Or, if I drink or eat something cold it feels like swallowing something sharp.

My advice to someone who thinks they have symptoms is 1) don’t panic, there are so many other things that could be going on. 2) Cancer symptoms are “progressive, novel, and persistent” so if it’s not those, you probably don’t need to worry. And 3) you are your only advocate. I experienced increasing back pain for over a year before I was diagnosed because of a palpable mass. I saw my primary care doctor 2-3 times for the back pain and he essentially said, you’re tall and your back is going to hurt, sorry. In short, if you are having progressive, novel, and persistent symptoms, then you also need to be persistent in getting the testing you need.

Don’t WebMD yourself into a panic though.

mesopotamius6 karma

Did you go back to your primary care doc to be like "I told you so!"

Joey_Massa18 karma

Haha no, but I’ve definitely fantasized about it. I’ve got better stuff to do TBH.

mesopotamius12 karma

It might be worth calling his office at least, so he gets an apparently well-needed reminder to actually listen to his patients.

Joey_Massa14 karma

I personally feel that he actually did a pretty decent job. It would’ve been cool to be diagnosed a few months earlier, but a GP’s role is to be a barrier of entry in some ways. I can see how folks would feel differently. Personally, IDK why we don’t all get a CT every 5-10 years, obviously I’m no expert but i feel like you could get a decent ROI on catching things earlier.

mesopotamius7 karma

Besides the dose of radiation a CT scan gives you, false positives are a real thing in medicine. Everyone has something medically weird about them, but most of the time it's totally benign. So regular scans for everyone would result in a lot of unnecessary surgeries to remove benign cysts and the like.

Joey_Massa5 karma

For sure, like I said no expert. That being said, benign cysts are totally a thing it’s good to know you have because they can cause problems even if they’re not malignant and can definitely become malignant.

Really, my point is that it seems we’ve started to find that some preventative testing and investment in catching things earlier can have better outcomes in both health and fiscal impact, so maybe we should look at expanding those options. That’s all I’m really trying to say.

Joey_Massa4 karma

Totally, again, my personal feeling is that he actually did to a decent job of listening to me, and pushed back on the 25 year old who thought he might have cancer just enough. He did help me get diagnosed after all, and my case is totally an odd-ball.

I understand your feeling that it could have been addressed sooner though, in my case nothing’s perfect and I’m pretty satisfied with the quality of care I’ve received through treatment.

splashatttack2 karma

I'm a patient of Stage 3 Rectal Cancer and am going through chemotherapy myself.

Do you have any advice for someone who is earlier in their own treatment journey?

How do you deal with the side effects? I'm on FOLFOX right now

Joey_Massa5 karma

Don’t be afraid to ask for help, lean into it in fact. Just like always the worst someone can do is say no, and the best is that you might get help you didn’t even know you needed. Myself included! Don’t let yourself feel guilty for silly things related to your treatment, no one is, or should be, judging you on that.

Medical cannabis has been the most helpful thing. I’m also a big fan of ginger for nausea. Is there a symptom that’s affecting you in particular?

TaxTheBourgeoisie2 karma

Just CT? Did they give you contrast? Or a PET/CT with an injection of FDG?

Joey_Massa2 karma

I get PET/CT’s when they want to confirm that something is indeed cancer, or if something looks like it’s borderline. I’ve had two so far. They’re more expensive and a more intensive test so we don’t do them unless it’s going to make a decent difference in knowledge. I can digress further but it starts to get pretty technical and I’ve got a lot of questions to get to. Hope this helps, feel free to ask more specifics if you’d like.

SFanatic2 karma

Oh shit you have Now Disease? That sounds pretty serious, I'm really sorry OP.

Joey_Massa2 karma

You get a now, and you get a now! Everybody gets Now Disease! Sorry you’re being downvoted. I think your rhetorical joke is funny <3

StickyMarmalade2 karma

How did having cancer affect your ability to star in Mad Men?

Joey_Massa4 karma

I've had to downgrade my aspirations to being a Mad Lad

ACNordstrom112 karma

What's your favorite kind of cheese?

Joey_Massa3 karma

Sharp cheddars, anything that’s got those salty umami crystals... um. As a seattlite, I’ve gotta recommend Beecher’s Reserve.

paradajz6662 karma

Are you aware that you beat cancer on a place where the mortality rate is the highest? When I hear pancreatic cancer I already say: "oh the poor soul won't survive". Respect my friend I am really happy for you. I wish you all the best in life! And fuck cancer!!

P.S. Sorry for my bad english.

Joey_Massa5 karma

I'm well aware of how incredibly lucky I am. Thank you :)

bigbrycm2 karma

Now you evidence of the disease? Or no evidence?

Joey_Massa2 karma

No, haha. Edited. Sorry about the autocorrect, posted on mobile.

UltracrepadarianMan2 karma

What has your diet been like the past few years? What has changed the most regarding diet before you were diagnosed with cancer?

Joey_Massa3 karma

I’ve been practicing a few different things: vegetarianism, veganism, whole30, paleo, keto inducing diets. The most helpful was keto and I’m hoping to try more after I’m done with this round.

The biggest change has been just trying to be more conscious of what I’m eating, both for my health and for the health of our planet, and it’s hard because I’m pretty poor (being on SSDI) and live in Seattle (which is important to me for my treatment options, and my wife’s career) but I’ve also been trying to be really conscious of the meat I’m consuming and where it comes from. I grew up on a farm and for a long time most of the meat we ate my family either raised or hunted, so it’s important to me to reconnect with my food as much as I can.

msiekkinen1 karma

Can you eat food or on feeding tube?

Joey_Massa2 karma

I can eat thank goodness. I do have to take digestive enzymes because my Pancreatic function is impaired. (IDK why my phone keeps capitalizing pancreatic, sorry)

GrungyGardener1 karma

Congratulations on beating it. Keep a close eye on it however, pancreatic cancer is a bitch.
Sad Story Ahead:
My mom was diagnosed with Stage 4 Pancreatic cancer in September 2017, they only found it because the tumor pushed up against a liver duct and she turned yellow. My mom was very stubborn and didn't want to do chemo (after seeing my Grandmother struggle through it for bone cancer) but decided to the Whipple Procedure in October 2017. -My mom liked to boast it was the closest thing to being an autopsy someone alive could go through- The surgery took most of her pancreas, her stomach, some of her intestines, and some other things within 6 inches of the tumor.
She was still losing weight after the surgery because going through something like that really changes your body, but she wasn't as sick as she was before. She started going to the gym, lost about 150lbs, was selling her handmade crafts. My mom had be doing okay again. November 15th 2018, she got the All Clear! No signs of cancer. But she kept telling me that she was feeling sick again like she had when the cancer was around.
December 24th, 2018 she goes into the ER because her legs are swelling, she can't move from the weakness, and she hasn't been able to eat. A week later. she gets a totally different sentence from the All Clear nearly a month before. "Your Pancreatic cancer is back, and it's metastatic to basically everything in your abdomen." The Doctor I spoke to didn't want to give her any kind of timeline, he kept urging her to just try chemo, even though a second opinion told her she was much too weak and it would kill her. Second opinion gave her Three Months to live, the Pancreatic cancer was aggressive and multiplying substantially.

My mom died a month after she went into the hospital, January 24th, 2019 at 1 in the morning.
It happened so fast. Always trust your gut (badumtis) instinct when it comes to your body.

Do you have friends and family who are a support for you?

Joey_Massa2 karma

Yeah, I feel I have a pretty decent understanding of the disease, I get scans every three months as it stands and do my best to pursue the most effective treatment options available.

I do have friends and family that support me. My first round of treatment was pretty different as my support structure (outside of family) melted down around me, but this time around I've made an effort to only pursue friendships that make -me- a better person and by result, I've surrounded myself with people who are all incredible and so supportive. (and probably better people than I am at that)

vonvincent1 karma

Happy for your positive results. Did you use any Cannabis in your treatment? Especially during chemo? A childhood friend recently got diagnosed and I'm looking for ways to help him through chemo.

Joey_Massa2 karma

Yup! I've got a few comments addressing my marijuana usage. Let me know if you can't find them, or want more info.

Bommie201 karma

What's the top thing on your bucket list now that you're cancer free?

Joey_Massa2 karma

Answered other places: being present here and now, and being a Good person.

error_331 karma

what does the pain feel like? Did you ever have acute pancreatitis? if it is just pancreatitis pain I feel for you

Joey_Massa2 karma

I'm not sure if I ever had panceatitis, but some of my early symptoms would make sense for that, just never got it verified.

The pain was pretty hard to differentiate from the actual back pain I was experiencing. The biggest difference was that the pain progressed in intensity.