pain management

[db1966]

I’m curious what fellow warriors daily pain management looks like. In the past 8-12 weeks the increase in pain is noticeable. Previously I was walking daily and able to work. Now it’s a quick walk with the dogs in the morning and that’s all I can manage. Aleve did help but now I’m using hydrocodone to ease the pain but that only lasts for 4-5 hours. As per my post over the weekend I’m due to start Pluvicto in January but until then this is new territory for me after 7 years 😢 yes I do like to post pics of my dogs to lighten up everyone’s day. He is very sensitive and lays right next to me when I sleep during the day. Dogs do know!!

[6357axbz]

They do 👍

[Zengal79]

Dogs definitely know. My guy controlled his pain with NSAIDs and marijuana until blood counts started tanking. No more NSAIDs with the low counts. That was a real bummer! He found NSAIDs the most effective. Then, for several months he got by with small dose 2mg hydromorphone every 4-6 hours. The smallest dose of extended release morphine 15mg twice a day was his sweet spot for the duration and fortunately never had to increase. He credited the marijuana gummies with keeping him off opiates and then low dose for so long.

I might suggest getting a palliative care doctor. That helped my guy a lot with finding the right med combo. Best wishes to you in your journey.

[db1966 in reply to Zengal79]

thank you for this. I do have a palliative care doctor who I’m due to see again on the 28th. So far he is suggesting tramadol or hydrocodone only. Haven’t looked at marijuana gummie but will do. Thanks 🙏👌

[HopingForTheBest1 in reply to db1966]

I was occasionally using Tramadol 50mg, but when I took it before bed it kept me up all night. My MO switched me to Morphine 15mg. Definitely works better for me.

[gsun in reply to HopingForTheBest1]

That's interesting. I take a Tramadol (sometimes two) in the evening so I can sleep with pain. It helps me sleep.

[Kaliber]

cute dog , thanks for posting a picture of your QOL buddy.

I have a lot of skeletal joint Mets issues LOTS. I have a lot of “ discomforts “ ( doncha just love the way this word is tossed around about pain yayahahahaya). I take norco 10s ( Vicodin ) four times a day , and I have dilaudid 4s for when there is breakthrough pain. I started on Vicodin 5s then after three years , switched to 10s. I’m nearly immobilized via ADT SEs and a massive skeletal met load / damage …. Those pain meds are vital to my daily comfort.

😁😁😁

[db1966 in reply to Kaliber]

thanks Kaliber. Have you considered CBD, Delta 8 or Full spectrum THC. I’m researching at the minute. Either way hats off to you as that’s a lot of Mets to deal with. ADT SES ?

[Kaliber in reply to db1966]

I’ve been a long term ( licensed) hydroponic grower-provider for a large central California medical cannabis co-op and have considerable experience with those products you mentioned and dozens of others….. before recreational was legalized and growing became pointless . Although there are people on the group that say THC has no pain relieving benefits, I’m not one of those because it does work for me.

either way I cannot use Cannabis or any product with THC in it because I’m drug tested randomly and periodically , often several times a month . my healthcare provider is Kaiser and they make you sign a contract to agree not to use a whole range of different kinds of drugs , THC first on the list. This in order to get your opiate prescriptions. THC is totally out of the question for me probably for the rest of my life.

❤️❤️❤️

[db1966 in reply to Kaliber]

I did not know that. I’m with Kaiser also 😯

[Hidden in reply to Kaliber]

kaliber, I am sorry you have to deal with so much pain. You seem to be quite knowledgeable with Cannabis and THC. I read there is a certain mixture that is specific for cancer, can help with pain and I thought I read stops tumors but that may be wrong. I read so darn much, I’m on overload these days. Thanking you in advance, Kaliber!

[dockam in reply to Kaliber]

Oh dang Bruddah, I didn't realize that you had so much "discomforts" that required all those meds. That you travel with the GI issues and on those opiates makes your QoL Outings even more Impressive, you are such a Bad*ss.

Luv ya Bruddah

Wayne's World scene

[Kaliber in reply to dockam]

❤️❤️❤️

[dockam in reply to Kaliber]

💙💙💙

[babychi]

I use hydromorphone (Dilaudid) 2mg when I need it. Nothing takes pain away quickly like this drug does, for me.

[Kaliber in reply to babychi]

I get 4s and when I need them , those work very well.

[nobaday]

I used NSAID Indomethicin and it worked well for about a year

.After T9 surgery ( recurrent T9 spinal compression ) and C3 surgery to support C3 erosion I went on T3/ codein but resulted in bad constipation. So switched to Tylenol extra strength up to 1g every 8 hours and hydomorphone up to 50mg per day combined extended release/ quick acting. Now on hydomrphonr extended release 9mg 3 x per day and Methadone 4mg 3x per day as I switch from hydromrphone to methadone. Seems to be working a bit better with methadone but get a bit of nausea and some fatigue. Not sure what others experience with side effects on hydromrphone and/ or methadone??

[db1966 in reply to nobaday]

thanks. How are you functioning on a day to day basis. ?

[nobaday in reply to db1966]

A good question. A year ago I was going skiing , working in the family ski business, playing in goal in soccer as my balance too wobbly to play out of goal, and feeling my QOL pretty good.

Now I’m semi immobile relying on others to drive me around and wondering when my pain will stay below 2 so I don’t have to think about it or have to lie/ sit down to rest. The only soccer is watching the World Cup. The only ski business work is online purchasing and unpacking and tagging a handful of boxes until my shoulders start hurting.

But I’m on a Lu177 trial and have had 2 infusions so far without having to travel and pay tens of thousands of dollars for the travel treatment. So I’m optimistic that in 6 months time I can be playing back in goal in soccer, doing some spring skiing and being able to go travelling with my wife and play golf with my grownup boys.

You are only like 56 so hopefully you will find some pain meds so pain does not affect your QOL. You also have Lu177 treatment soon which could zap/ decrease size of your Mets and hopefully decrease your pain. And have your QOL back.

[tayninhtom]

I have done my best to avoid taking aspirin or Aleve. When the joint and muscle pain hit me, I have found that the daily dozen exercises plus leg strengthening exercises that are available on the Internet relieve the pain for the day. Like you, I walk in the morning. However the isometric exercises are necessary to offset the impact of the cancer drugs.

[db1966 in reply to tayninhtom]

at the moment any excessive exercising causes further pain so exercising is out. Frustrating as I played a lot of squash and golf until last year.

[andrew61]

4 hourly Oxycodone and ibuprofen. Twice daily dexamethasone.

[Newyork6264]

Oxycodone as needed. Usually every 3-5 hours during day. Not needed at night as well as long release Methodone.

[Linebacker75]

Morphine Sulphate 15 mg er is the lowest dose available and is normally taken every 12 hours. It works really well for me and replaced the Hydrocodone that can cause liver issues. I also consume a few 10 mg thc gummies each day. The gummies take away any break through pain and have kept me from needing to increase the dosage of morphine for the past 4 years. Something to consider.

Fight on brother.

[db1966 in reply to Linebacker75]

I’ve been researching gummies. What brand are you using. Thanks for responding.

[Linebacker75 in reply to db1966]

You’re welcome sir, since I don’t know what state your in let me send you a d m. Im currently at my dentist so look for my message a little later this afternoon. Enjoy the day.

[bglendi53]

If you're pain is in a specific area you might consider targeted palliative radiation, working so far for me.

[db1966 in reply to bglendi53]

yes it’s plan B. Starting Pluvicto in January.

[EdBacon in reply to db1966]

The problem is if you get radiation it may delay your Pluvicto treatment. My doctor warned me about this recently.

[db1966 in reply to EdBacon]

I’m not doing radiation unless for some reason Pluvicto doesn’t work.

[EdBacon]

I'm in the same boat, trying to hold out until the end of January when my first Pluvicto is scheduled. I got my doctor to agree to fit in another round of chemotherapy between now and the end of January since it does seem to work somewhat and relieves the pain. Hoping to at least slow it down although sometimes it feels like I'm throwing bricks at moving freight train.

In the meantime, I'm using Norco (hydrocodone) 10mgs or splitting them as needed. They work quite well, although they do make me a little nauseated and sleepy, but help ease the depression which I do appreciate. Sometimes I have to dose every 4 hours, but generally 6 hours is OK. Have to take Senna for the constipation, but that's pretty much the same with all opioids. It's a bitch dealing with the pain, my hips are getting to the point where walking is difficult a lot of the time.

[db1966 in reply to EdBacon]

yep. We’re in the same boat. I will update you all when I start. Keep fighting.

[db1966]

thanks for this info. Will read it carefully when I get home. I’m having a vit c iv right now as I’ve had flu and need some energy.

[KocoPr]

Fight on brothers! My heart goes out to you all. It brings tears to my eyes reading these posts but i find it important to read them.

Oh and doggies are the best!!! Looking for a pitty friend to adopt.

[dockam]

Just read your Profile and what you're going thru would make lesser men tap out, you are an Incredible Man with a dogged determination that has kept you here with us. Yea, opiate induced constipation is horrible, wouldn't wish that on anyone. Okay maybe a Drug Cartel head.

You are still doing QoL ventures and have made many adaptations to your travelling, with The Hammers help.

My #1 son is a Type 1 Diabetic since 22 months old, he's 38 now. He's on an insulin pump and a Freestyle remote blood glucose monitoring. When we did 5 days on the Camino Frances in Spain, he had to swap out his pump site. His wife was well versed in assisting him in doing that, just as The Hammer assists you.

That's wonderful that you did work around the house, it takes your mind off any "discomforts" and also gives you a sense of accomplishment.

You are definitely still in the game and it ain't close to being over!!

I speak for most of us here, we're so happy that you are with us and contributing to this Forum

Right on, Fight on, Live on, Laugh on, Post on, and of course Yayahahahaya On

Te amo mi hermano 😘

Lil bro Randy

[dockam]

Ummm, you are all that, and a bag of chips 😂I'm a Travelin Man, made a lot of stops, all over the World

youtu.be/KbG4vf0crOs(Not working as expected?)

Oh Brother, you know Imma Food Porn like Crazy. And Beach scenes with a Primo beer and poke, or plate lunch, maybe Spam Musubi, Dim Sum, and then a Shave ice for dessert (I get Adzuki beans and ice cream with Rainbow colors syrup ) . Malasadas before I hike up Diamond Head crater.

For years, 1st thing I do after getting

rental car, is to get Ahi Poke and Primo beer and eat and drink in the car 🍻😂🚙

best-of-oahu.com/diamond-he...

restaurantclicks.com/hawaii...

And the wonderful Blue waters, hopefully it's Sunny.

Luv u Bruddah

Fight on, Love on💙

Randy

Primo beer and Poke

[Hidden]

Thanks Kaliber, I had to laugh when you said takes testing and sampling… this is what happened when I tested one of my husbands brownies home made by a friend …cheap date!

No testing for me!

[Kaliber in reply to Hidden]

Ooooops …. Yayahahahaya… at least they worked pretty good . 😂😂😂

[CSHobie]

It's almost weird that nobody mentioned Fentanyl patches. They work well, and have much less constipation effects than oral Opioids.

Instead of putting the huge 100ucg/h patch on, and changing it every 3 days. I cut it in three pieces, and put on a third, every day. So I replace one third every day, and that works really well.

In Addition Morphine sulphate for breakthrough.

For constipation use PEG3350 daily. And Cascara Sagrada as needed as stimulant laxative. That's a combination I find really great.

[db1966]

not ready for something that strong yet 🤞 but the peg 3350 is something I will try.

Thanks for the feedback CShobie👍👌😎

[Ptripp2]

my dad does well with THC and strength training.

[dockam]

I usually hit up Foodland after I get rental, as they have a decent variety and can get Primo beers there too

foodland.com/our-stores-poke

In CA the Poke restaurants up here offer Tortilla chips with it, to me that's Blasphemy

Aloha nui loa

Randy

[dockam]

Yea, I know, but being Asian means Poke alone or in a rice bowl

takestwoeggs.com/hawaiian-p...

I'm making myself hungry, can't wait to get back home to Hawaii

Fight on, Poke on

Randy

[dockam]

Yes, both are premium grade, sashimi is the ultimate in freshness, as it's eaten raw with a lil soy and wasabi. Less fresh fish needs to be cooked. Poke is made with sashimi grade tunai with soy, sesame oil, onions, ginger, garlic. In Hawaii the have it Local style with limu (seaweed) and crushed kukui nuts. See that pic above for reference Bruddah

onolicioushawaii.com/what-i...

[Kaliber in reply to dockam]

Roger that big guy ..

I just realized we kinda hijacked part of this thread with food talk. I deleted my non pain posts to keep this thread pure. We can do this in our QOL lifestyle posts later on bruddha.

❤️❤️❤️

[dockam in reply to Kaliber]

Oh yeah, lol. We can get way off on Tangents sometimes

[CSHobie]

Thanks Kaliber.You are very correct, I have to watch what I say to my Palliative Dr.

I have had trouble with her, and I actually have to move to a new Dr, because we don't get along anymore.

Despite the fact that I have a terminal disease the doc is more concerned with the rules than my QOL.

[Kaliber in reply to CSHobie]

❤️❤️❤️