Sadly, I haven't been well enough to write a proper blog post that's up to my standards, but am functioning well enough to give a quick update.
It's been a 1,013 days since my original prostate cancer diagnosis, so I missed the magic milestone of 1,000 days to do something special. It's also been about 18 months since my neuroendocrine diagnosis, and everybody else I'm aware of that got a a neuroendocrine diagnosis in January 2020 has now passed. This includes a friend from work who was diagnosed with small cell lung cancer (basically neuroendocrine cancer of the lung) about a week after me. These deaths have cast a large dark cloud over my recent struggles.
In the weeks after Folfiri failed, I developed a severe pain in my left buttock and an MRI showed no spinal compression and offered no other explanation. I've since had two treatments with Lubrinectidin (approved last year for SCLC, being used for my neuroendocrine at the suggestion of Dr. Beltran) and while my liver enzymes have improved implying that this is working at some level, my leg pain has evolved and now affects my entire left leg. For a while it was also affecting my right leg.
My daily dose of oxycodone has tripled, I've started on gabapentin, and am currently increasing my dose of dexamethasone. Still, I have several hour periods where the pain in my leg breaks through it all and I'm left screaming and crying in pain. This interferes with sleep, and the side effect of most of these drugs is a foggy brain and a drunken body that staggers to the bathroom occasionally. Such short trips are enough to aggravate the pain. Sometimes I have trouble getting a stream started in the bathroom, leading to multiple trips to empty my bladder once. Welcome to my version of life in hell.
At this point fighting cancer is no longer my number one priority. I'm working with my oncologist (mostly his NP but she's going on vacation) to try to get the pain under control enough so I can tolerate additional MRIs, perhaps a lumbar puncture, any test that may help find the root cause of the pain. I'm desperate enough I've even suggested the idea of checking myself into a hospital so they can roll my bed from test to test instead of me having to take a long car ride each time.
I'm still on the waiting list for the DLL3 trial, but in my current condition I doubt I'd qualify. I certainly can't imagine riding into Dana Farber from rural MA for the daily blood draws that would be required at the start of the trial (first use in humans, so they want all the data about how long it stays in circulation, etc.)
I need to get this pain under control, preferably with less opioids and gabapentin so I can walk and drive safely. Then I can think about returning to my BHAG (all caps) or even a scaled down bhag (small letters, same idea, shorter distances). Until then, I'm basically either asleep, or laying on the couch trying to manage my pain if I'm not groaning, screaming, and crying though a major flare which has been happening on average at least once a day.
Once the pain reaches a certain critical point, my thoughts go dark and I honestly believe I've entered my final spiral and such emotional turmoil does not help get the pain back under control. We also upped my dose of clonazepam to try to stop or slow down this spiral, and so far it seems to be helping, but nothing has been a magic cure.
In summary, I'm in a really bad place right now, and I'm coping with the pain because I have no other choice, and not because I have any special powers of pain tolerance. I'll point to all the time I spend crying like a baby as proof.
Written by
tom67inMA
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So sorry for you pain. I don't really follow this site anymore since my husband passed, but I am sending you sincere good wishes for more peace and pain free days.
I’m so sorry to hear about the intractable pain. I hope they find a way to relieve it.
I like the idea of checking in to the hospital until they can figure it out. A friend of mine was in a similar situation and they did resolve it (different cancer/different pain) but having all the tools right there was the key.
While Dr. Myers was convinced that cannabis accelerated the growth of prostate cancer, it may also be more effective at controlling pain over long periods.
You want to consider it as an option to oxycodone.
I've tried it, but have two problems: for me, pain relief is on the other side of falling over stoned, and when it wears off I believe I get rebound pain.
Tom, I'm right there with you, small cell neuroendocrine, just further upstream...I also had trouble with canabis, but found vaping at a pre-combustion temp gave me pain benefits without the 'highly stoned' side effect. Everyone on this site is with you. Love you my Brother.
I'm on 300 mg a day, and the moment I started had symptoms of facial paralysis. My right eye won't open all the way, and the left side of my mouth can't smile. It's a shame because even at this dose it seems to help with the pain.
When I had leg pain a while back, due to a small lesion at S1, 300 mg of Gabapentin wasn't enough so I asked for 600 mg & took that twice daily.
A few years ago when my wife was on chemo, she suffered from shingles pain. She is generally sensitive to normal doses of drugs & did not like 300 mg Gabapentin (drug head), so she moved to 100 mg, which she had to take hourly - so she was using 1,200 mg / day too. For breakthrough pain, she used a small dose of Hydrocodone.
I recently went to the dentist. He was working on one tooth that had chipped while I was in covid-captivity. He said: "That's odd, have you had any pain?" I hadn't. "You have an exposed nerve."
When I was about to leave, he said that I would probably feel pain when the injection wore off - "If it persists, you will need a root canal." Gee thanks! Sure enough, it persisted, but nothing that 600 mg Gabapentin can't handle.
Our situations were/are nothing like yours, but you might be able to get benefit from a much higher dose of Gabapentin.
Problem is I'm getting side effects from 100mg 3x daily. I'm sure if my body can adapt a higher dose would help. My doctor is currently focused on getting me to a place where more tests can be run, it seems he's thinking the cancer has got into my brain or spinal cord. I generally wouldn't want to know, but if it opens the door for very targeted treatment to fix the root cause of the pain it could buy me some quality time.
I hope you find some way to deal with or reduce the pain.It's times like these when I really try to see the big picture. I don't know what you believe but I believe in an afterlife.
Regardless, I firmly believe that it isn't the length of our life that defines us; it's how we live and what we do.
I agree it's more about how we live our days, but my options have mostly been reduced to social media and mobile gaming. If I don't wake up tomorrow I think I'd be okay with that.
You can make a wonderful impact via social media. I'm not sure about gaming BUT it can be relaxing and helped me escape when I first got the dire news.
Your fighting spirit is an inspiration. And I don't throw compliments around lightly.
And you remind us that for many this (SM + gaming) is a major lifestyle choice, but never for you based on your blogs. This must be a tremendous additional emotional burden for you, but these moments don't define you for me: You will always be an intelligent, thoughtful, honest and humorous fellow no matter your physical condition!
As for pain, the only thing that works for me is heat, and lots of it...but only when I am subjecting myself to it, sadly (Stabbing pain, meet stifling heat!...). My full body heat pad is a true pal.
I'm finding an ice pack on the back of the neck helps along with clonazepam. It seems when my pain reaches a certain level my emotional (over?) reaction causes things to spiral out of control and I go to an even darker place.
About gaming … you can Jack your gaming life into the next universe by getting yourself a “ oculus quest “ VR goggle. The ultra dramatic world those bring to you is literally jaw dropping and totally immersive to the point you feel you are in these new realities. Don’t get the oculus quest 2, there are bugs with those, get the original oculus quest, it’s affordable used off eBay but less affordable ( under $400 ) off Amazon, but a better , more reliable , source. Seriously , if you haven’t tried those it’s worth it and then some. Immersive VR is a well known and proven painkiller ….. It’s commonly used at UCSF Benioff Children’s Hospital in San Francisco and my wife promoted it for several years at medical conventions when she worked for UCSF S.F.. They are amazing. If you want more info, pm me and I’ll give you some hints , tips, game ( seated games ) suggestions.
I use mine almost daily and it’s a life changer, I can skip my Vicodin’s for hours while using one.
Just say’in ❤️❤️❤️
Google : virtual Reality goggles and pain relief ….. for plies of clinical application and all the medical centers using it now. It’s widespread ….
Unfortunately I need simple gaming I can do laying on my back in bed with my head dizzied by medication. Last night I was doing puzzles while waiting for my drugs to take effect while my wife slept next to me. If I could regularly sit up to game I'd dust off my PlayStation.
Far as I know …. Most sick hospitalized children that use them, use them “ laying “ down in bed. I was thinking more from the pain relief aspect than pure entertainment. There are many relaxation , travel and even social apps available .. the one called Tripp is very good at focused meditation and relaxation… it’s won awards as a meditation app. You can stream “ any “ media serving service , to the headset over wifi and watch the movies on what is perceived as an huge screen like IMAX .. curved or flat.
I’ve walked the streets in Paris and Mumbai, visited the pyramids and visited old childhood locations as well. All via the quest.
Trying to equate a two dimensional PlayStation to a three dimensional immersive VR simply isn’t possible. The extra dimension adds content that removes it from comparison.
The American pain society raves about the pain relief of 3D VR …. Says 2d games just don’t work.
Anyway, just a suggestion, seems like you have already made up your mind since it’s doesn’t sound like you have checked it out. I thought it might help you with pain relief like it has helped me.
I tend to be a laggard when adopting new technologies, and I'm not even in shape to get milk from the store, let alone contemplate buying new technology online. I do hear your pointsand am surprised to learn VR can be used laying down. As you can tell I know nothing about the technology.
Yayahahahaya I hear that big guy …you gotta do what works for you , that’s the name of that tune. Guess I’m kinda the same. Not a thing wrong with that. The only way I can get into a store to buy something is use my e-trike …. because adt has both crippled and zombized me yayahahahaya yayahahahaya. A little different details from you but kinda generally the same as well. At least both of us are “ still “ alive … still “ truck’in “ yayahahahaya ( crappy as it is. )
I hope you get some comfort dialed in there … everyone here is concerned about you warrior … hop back in here and let us all know when you get that pain managed … it’s just cringeworthy thinking about it.
Peace brother ❤️❤️❤️
E-trike electric moped
Hey Tom, I’m sorry you’re suffering so brutally .. I’m praying for you to break the chain of pains . 🙏❤️
Tom we’re truly sorry to hear you are in such pain. May they find something to alleviate it sooner rather than later. Please know we are thinking of you and hoping for better days ahead.
Shitte, I feel bad for you. I’ve followed your blogging and was hoping you could at least get back to the five k’s. I kept my gabapentin at 300mg too, and that really helps me sleep with no aching bone pain. For pee’ing at night, I decided it is not worth the risk to walk to the bathroom (only 12 feet or so, and I just use a bottle (roll out of bed, drop one knee to the ground, and do the pathetic 5 oz.). Hoping your misery loves company, as we all have a bit of it. We are all pulling for you.
My wife kept my father in law's walker, which allows trips to the toilet without the leg muscle stress of trying to balance. It's a stop gap solution for now.
Dang Tom …. I’m so sorry to hear … not much can be said except that I hope your pain management team gets you fixed pretty quick. My friend Bussman. ( Urang on this group ) lived 22 years after DX but suffered unspeakable horror along the way. He had a lot of stainless hardware supporting his spine and one extremely excruciating painful met that ate directly into his spinal chord caused him to have spot radiation on his spine that left him paralyzed from the waist down. He eventually rehabbed to walking again …. the pain from that met was unspeakable…. After the radiation, the pain was thankfully gone. Even with all that …. tho docs were able to remediate that pain eventually ..near the end , he had an implanted pain med pump and had additional fentanyl patches and fentanyl lollipops . Toward the end he was mobile and mostly comfortable in home hospice home care ….puttered in the yard …took walks ( hell I can’t even walk yayahahahaya) ….. it wasn’t bad.
The point being that your pain management team should be “ very “ capable of managing your pain for you …. That’s at least one good thing. I know It can’t come soon enough. Getting that out of the way is priority one.
I’m thinking positive vibes and hoping you catch a dang break Tom … you deserve some good news for a change.
Thank you Tom for sharing what’s really happening in your life. Sometimes I think we only share when we are feeling well. Living it. Impressive.
Through it all, you’ve provided outstanding narrative and analysis. I believe you will continue to do so, through the fall, where we expect another fall picture out at your country place, with the beautiful background, and a smile on your face.
I want to express my sorrow and understanding about your pain, but the words escape me. Only thoughts of hope, and wishes that you find relief and be able to escape the grip of the effects of this insidious disease we all share. So I'm letting you know you're on my mind, and how I hope to send positive energy your way, anything that could help you my fellow warrior!
Hi Tom, Really sorry for what you are going thru.2 years ago ,about a month after I finished 25 sessions of RT I had an excruciating pain which started in my left thigh down to my leg. I couldn't sit ,I couldn't lie. I barely could stand. the only position I could eat was like a dog...Went to the ER three times until my MO ordered an MRI which found I had slipped disk which was pressing a nerve. The only thing that really helped me was a physiotherapist who specialized in sport injuries + NSAID.
Hi Tom,Wishing for pain management, QOL and restful sleep then once under control BHAG! Your idea of getting admitted for proper diagnostic testing is good. MRIs can't always identify the immediate source of your pain however, advanced scanning techniques may shed some light. Best of luck for improvement yesterday!
So sorry to hear about this latest turn of events, Tom. Praying for you to find something to help with your pain. And praying for your wife to be able to help you get through this ordeal.
My thoughts are with you. And pray that they find you some relief in your pain , it’s no way to live but please remain positive in the hope that they will find a solution xx
Hi Tom, I can’t believe you are suffering like that and they can’t find a reason. It is unacceptable. More testing needs to be done to figure out the cause. It might not even be cancer related. Praying you get some relief very soon
My heart goes out to you…living with constant pain sounds like torture. I take 1200 mg of gabapentin every day for spinal stenosis and it is a godsend to me. I hope it provides you some relief.
There's nothing God can not do if you believe. Think positive and consider yourself healed in the mighty name of Jesus. I have you in my prayers. Head up warrior!
Sorry, but I'm not a believer. I appreciate the prayers of others (so please feel free to keep praying) but personally I lean towards buddhism and shun the idea of deities that could have stopped my suffering long ago. Religion generally pisses me off these days.
When oxycontin is supplemented with Ibuprofen and tylenol a clear benefit in the management of chronic cancer pain resulted due to enhanced analgesia and a reduction in concomitant narcotics use. Do your own due diligence. God Bless You Tom.
Tom , I always look forward to see your progress. Hope your doctor's can find the relief you need and when you do take a trip to Windam in your Mustang. Prayers are coming your way. Bob
Oh d*mn!! So sad to hear of that insane amount of pain that you're experiencing . My sincerest hopes for some relief for you Brother. I can't even imagine how I'd fare under your circumstances.
Tom,Damnit Man. There has to be a better way. I agree with you and a couple others. If you hv Medicare, or decent private insurance. Dial 911. Get ti a hospital. No one receives any awards for manliness of gutting it out with pain. It is 2021. They will get you into a pain free slumber. Pharmacology for pain is available by IV. No award. No trophy. They will get you into a happy zone and maybe a same day scan to find where the pain is originating. So sorry Brother. Thanks for reaching out to all of us.
Hate your update. Not even Seven Stooges could relieve that pain. Hope you can get some relief and get a laugh or 2 in soon.
Pain relief
So sorry to hear about your very painful condition. It has to be very difficult for your wife and family too. As others have suggested, it might be time to press harder on the medical establishment for an effective treatment. Would a pain management clinic or practice help, if your oncologist or urologist can't?
Oh Tom, so sad to hear that your situation has gotten so dire. You have been such a help and inspiration to me over the last 18 months. I hope you find some relief soon my friend. My thoughts and prayers are with you 🙏 DD.
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. My sincerest hopes for some relief for you Brother. I can't even imagine how I'd fare under your circumstances.
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