We've been struggling with gone pain. There isn't more that can be done. We've had some scans that show a lot of progression. We are 14 years into Stage iv.. something we are grateful for, THOUGH, this is really tough..
Methadone is being recommended. I am looking for information about how active one can be with methadone. My husband wants to continue being involved with life. I think they will combine oxycodone and methadone.
I know everyone is different. Any information will be more than I know at this point. Yes, I've googled and found good results in Europe and NIH.. etc.. I'd like some personal experiences.
thanks.. Bluebird... with LOVE and Strong health for ALL...
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Bluebird11
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I feel your love and pain . There is no real separation between partners . My wife sees and feels it all . This is love and that is worth every second . Love is eternal . ❤️
Hi.. Blue Bird...the brave wife ! Methadone is a long acting Opiate pain medicine. A derivative of the greatest pain killer natural substance called Opium.Only a once a day dose is enough and it not only smashes pain but also give mild sense of wellbeing.
Most people tolerate Methadone well and do not have impaired alertness. Do you notice those former Heroin addicts who are on Govt provided free Methadone . They take one dose in morning and walk and work just fine all day.
Besides the risk of addiction, the opiates are the most effective and least harmful of all pain
LearnAll.. seeing Brave is such a gift.. thank you...
This hospice appears to be good... there are two drugs I don't want him on.. one is Ativan and Haloperidol... Apparently, these are standard for years now.
I want to find substitutes for these.
Actually for anxiety, Diazepam 5ml is very good.. I just have to get them to prescribe it. He's having back spasms that a % could be the cancer, of course, though from pain and body holding, it's conceivable that the muscles are involved adding to it. I say this because twice now at sleep I give him a 5ml Diazepam and he hasn't awakened in 10 pain spasm.
I have to work on this.
I think we will soon discuss more the Methadone though I want to avoid agitation...
My husband's cancer is only located by scans in his bones. His liver, kidneys, heart, lungs are strong. The gift and the problem since this stinking bone pain is pushing at his 'life'...
Interesting enough our beloved oncologist who has understand our philosophy and truly has been a physician is leaving soon for another area of the country. Interesting how that happens...
My husband has been an outlier .. 14 years diagnosed stage 4.. with 12 1/2 enough good quality of life that he would sing Mick Jagger, prancing around, loving to show people how to pick produce.. someone who truly loves life..
He just never thought he'd get to this stage. I knew from day one.... this stage is hard to beat unless medicine really shifted. But, we did this in our own way. He got to be with our grandson from 6 to now 20... so many gifts..
It's never really 'time'.. though pain will allow one to say.. 'enough'...
We are going to hope for methadone to make some difference...
Bluebird...Choosing Diazepam is a good decision because it not only control anxiety but also is a good muscle relaxant. The pain and discomfort of muscle spasms can go away with diazepam. Its a very safe medicine . Underused due to possible addiction fear.The normal dose range is from 5 mg to 40 mg a day. IMO ..Diazepam along with Methadone should keep him fully comfortable.
Methadone is cheap because of massive Govt subsidized Methadone Maintenance Program for Heroin addicts from 1980s onward. Length of Methadone maintenance varies for different former addicts. Some have to stay on Methadone for entire life.
I have researched it through google. If you have other information or have worked with this being possibly a deadly combination, I will respect his and look into it further.. though this is what I found. Also, we are looking at 5ml. Thanks very much for your time and interest to answer this question...
What anxiety medicine is safe to take with methadone?
If you have anxiety while taking methadone, you have options for reducing your symptoms.
Methadone doesn’t come with the head “ high “ or body buzz you get from oxy or morphine but it can be a decent pain killer . The pain killer ability of methadone IMHO lags significantly behind morphine or oxy .... it takes more to get the same results on a one to one basis. Like weaning off any opiate or opiate like drug .... a lot depends upon the person doing the weaning. If you don’t develop mental hungers for the drug, physical withdrawal only takes a few weeks and is straight foreword. Mental addiction needs for the drug is an entirely different animal and can be a horrible mess to deal with, in people that develop those.
Daily life wise, the very light to nearly non existent buzz from methadone allows one to experience daily life unnoticed. Very little, if any , daily impairment. With methadone , it has a rapid “ fall off “ rate event ... if you are taking a lot and it wears off forgotten or unnoticed, the withdrawal hit is vicious and rapid. Need to keep your supply close and keep an eye on it to avoid deeply unpleasant monkey on your back experiences.
Methadone is an interesting choice for pain but there are so many other opioid choices that are more effective and only small amounts are needed. Hydromorphone and Fentanyl being good examples. All opioids loose their effectiveness over extended periods of time and cleaning up now and then is good to reset everything and manage those hungry pesky little forest of receptors that build in your brain yayahahahaya.
Good luck with your pain management and I hope hubby can find a pain management that works for him. As always, talk this over with a pain management doctor to be safe and get it right.
That was a lot of good information. I've been hesitant about the methadone.. I still have questions about the sudden drop off.
He can function on the oxycontin and oxycodone, gabapentin...
It's tricky a couple of times a day when the pain seems to get stronger.
This is not enough yet for me to want to switch, until and unless, we understand how methadone is handled. One down side you mentioned is the sudden drop off. That could be a problem. If he was just bedridden, I could see using it with that side effect, even using morphine.
At the moment, he is making his coffee and breakfast. He's amazing. I just wish he could see himself through my eyes. He is saying goodbye to his life. This is where I can't go with him. I can help to use my kick ass humor that makes him laugh, like.. 'HEY, there's no party happening out there- times have changed'.. an understatement... I know it goes way deeper than that, though there are truths and anchors that help us to shift perspective.
The game changer will be the pain and then if he has spinal cord involvement to a degree where that will make the choice for us.
I will let you all know what is happening... Thank you...
Speaking for myself, when you have been on long term Vicodin ( for example ) if you usually take 10mg three or four a day .....if you forget , or just want to stop and clean out your system .....The yuck effects start coming the next evening or even the next morning after that . The histamine kickback event where you choke coughing up on the excess phlegm , have coughing etc. ... the mentally uncomfortable issues etc. , pain sharpens dramatically. Morphine is similar but can have more intense after effects and those last longer. Methadone come down can happen late the same day you stopped taking your morning meds ...... not the drowning in phlegm so much but the rapid emergence of your physical pains and pretty ugly mental issues like strong panic attacks. The panic attacks severity are proportional to the amount of the drug you are taking. Of course all opiates can cause these same exact undesirable side effects, but ...for me, they come on quicker and more intense with methadone. It’s like morphine and Vicodin builds up and stores in your system and takes longer to wear down. Methadone doesn’t seem to hang on like the rest. That can be a good thing, tho, when you are stopping for your periodic clean up and train your receptors to calm down and take a break. I’ve never thought of methadone as being in the same effectiveness class as hydromorphone or oxy.
Work with your pain management doctor to help to decide. You could try methadone and see how you like it ... it’ll be different in different people. The quick clearing out of methadone could be a plus ...just keep your bottle of xanax handy to make the mental issues magically disappear if they arise.
Just my own perspective , it’s different in different people. My PCa buddy , Bussman, often took a whopping 120 - 140 mg of morphine a day ....often aided by fentanyl patches. He could simply just stop , to clean up, and shrug it off like nothing happened. I know it was worse than he let on but still .... lots of people taking those levels for the long terms he did ... might need a detox trip to get off comfortably.
I hope you get some better relief dialed in quickly 🌼🌸🌈🦋🌻❤️❤️❤️
This is excellent post for me since it raises so many integral questions.
We would need a miracle to have my husband normalize to the point of a lesser drug working, although today for 'whatever' reason is the first day that he has skipped a lot of the fast acting oxycodone. Maybe this batch of Oxycontin is better. That does happen unfortunately. We don't quite understand what is happening and not questioning the lack of pain.
There is a push to use methadone through hospice. Even the palliative care doctor we were with said it works great on nerve/bone pain.
I'd rather we continue with oxycontin though if they see one needs more break through that is attributed to the Oxycontin not being strong enough, they then push for methadone. I'd rather they increase the dosage....THOUGH here's what happened...
We are on Medicare. We have a good supplemental. For quite a while we had a 45.00 co pay for Oxycontin. In January Medicare changed their formulary and instead of 45. they wanted 580.00.
What they suggested was what they considered Oxycontin ER (long lasting) equivalent Xtampza. It would be the same copay. We said yes and had the most hellish 3 weeks of terrible pain control. One of our docs who didn't know the drug but looked it up said, it's the same. IT ISN'T.
I googled the drug and found numerous pages of complaints. These are from people who had been on Oxycontin for long periods, who knew their body, and knew what worked and what didn't.. Not only cancer but back injury patients. This drug is supposed to last up to about 12 hours.. so between 8 and 12 is a decent gauge.
It was erratic as in time release with people complaining it lasted 2 hours to 6 hours. Some outright said it was 'worthless'. That also was our experience. It failed as far as cancer bone mets. Once we went back to the brand name we went back to normalization. There is the generic brand but you have to shop pharmacies for it, it is 1/3 the cost.
The reason I say this is to share for others who may hit the same situation with Medicare.
As far as methadone, I want to stay with what we are doing. Hospice said we can always go back to what we were doing. I will say, the push is methadone.
We were deterred from Fentanyl, though I am not. It was said to be unstable. We are working through a fluid phase right now. What we did was double the Oxycontin to two 20's every 8 hours. So you can see pain is an issue.
Thanks for all the information. If I can help return the generous gifts I would be happy to... BlueBird...
J-o-h-n husband diagnosed stage iv at the young age of 55...
Well I think you could at least try it as long as you can go back where you were if it was better. Maybe your medical team can “ zap “ some of the worse mets with radiation. A pain management doc seems right in this.
It's no longer the case. It's no longer isolated to just a few, even the larger ones... though I will call our radiologist and as if he can look at his scans to see if he can get some relief.. it is possible .. anything is.. we've learned that... thanks
Yea, radiation was ruled out for me as well ( I have mets on almost every bone / joint in my body ) in my very first oncologist visit ( hospice was my first offer ) .... I’m speaking of, for example, when a met eats into your spinal column and generates unbearable continuous pain in that spot. That happened to my buddy Bussman. He got spot met killing radiation that eliminated his unbearable pain in that spot but it paralyzed him from the waist down for a while. Eventually , after a few weeks, he was able to regain his walking abilities. That’s the radiation I’m mentioning.
It’s really interesting- people just respond so differently to different meds. Fentanyl patches were also a game changer for my husband. For him, methadone does not have a fast drop off. He was on morphine ER for years and it did- a few hours late for a dose and he would be having withdrawal effects. Not so with methadone. Also, just FYI, you mention nerve pain- methadone is the only one of his medications that is supposed to also help with nerve pain which is something he also has a lot of. I would consider trying. It takes a few days to start working but for Joe, it did increase his quality of life and ability to get around... huge hugs as you navigate all of this...
hi i've been on this site for at least 12 or so years prior to it being Health Unlocked it was the Advanced Prostate Cancer Group... if we began 14 years ago.. I think I would have found you at least 13 years ago..
Has this site Health Unlocked been converted over now 4 years.. wow.. time flies.. I thought it was longer than that...
yes.. he is 69 years young...
It was because of this group and another Natural Therapies for PCa.. that helped me immensely... I am grateful for all the work involved with keeping this going..
It allowed me to go into doctor appointments with an amount of information and knowledge that was respected by our docs...
Thank you for your support..... But none of those comments bother me...Ever since I once got into it with a member (who mis-interpreted my post) who months later "checked out" in his barn, I do not sweat the small stuff. I felt terrible and still do that I never apologized to him (he was an Ace). The name calling is not worth my time (or talent) and keeps me from laughing. Thanks again, you're an Ace too!!!
It’s standard here to ask and or know the info on members , it the why of the bio. It helps the rest of us relate to the other members and their treatments properly. This is a death group of guys facing the end ... having our deaths in our faces ... being totally disrespectful and calling a croaker an asshole is shockingly callous and disgusting. You should apologize to John . Otherwise Darryl should plain 86 off the group you as you have broken the basic rules of the group.
I’m so sorry you are dealing with this. I had no idea now excruciating bone pain could be until the last few months watching my husband endure it. He is now taking methadone, 5mg two times per day and it has been remarkably helpful. He’s also using fentanyl patches, and for breakthrough pain has dilaudid and norco. We found that methadone was, after trying many other, newer and cleaner meds- ultimately the one that made the biggest difference in pain relief. He was at the point where he wasn’t able to stand or walk and methadone has given him some mobility back. Unfortunately a lot is trial and error... hang in there. This is not an easy road but good pain management undoubtedly makes things more tolerable...
Thank you for your compassion. I will call tomorrow and set up an appt with the pain management team. The question I ask is, can he function on all of that. Do you leave the house and take a drive.. he wants to finish writing a paper.. he has life in him.. it's the pain- that is unbearable....
He said tonight how do others deal with this amount of pain? I think we have a good hospice care that will help us, though I will always come here first and ask questions since this is the real 'people trials'... it helps immensely...
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