› Forums › General Melanoma Community › Anything better for pain management?
- This topic has 33 replies, 9 voices, and was last updated 9 years, 5 months ago by
arthurjedi007.
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- November 27, 2015 at 9:41 pm
I'm currently taking OxyContin in its 10mg 12 hour release pill. Plus oxycodone in its 5mg breakthrough pain pill. The doc says the only thing they can do is up the dosage. I was on some generic morphine 12 hour release pill before the OxyContin. Also sometimes the heating pad still helps.
Last winter I was on oxycodone. And some type of morphine breakthrough pain pill. Plus a couple strengths of fentanyl patch. Plus some awful nerve pain pill. But the radiation that almost did me in got me better so i wasn't on anything until a couple months ago.
The pain I deal with is a lot of spots. Although lots of pain it isn't the sharp pain like last winter.
The worst I would say is my left hip. There is even a small bulge on the side of the hip. Well I say small. About the size of my palm and about 1/8 to 1/4 inch height. When I press on it feels like bone. I dont have scans yet to prove it thats in a couple weeks as the regular scan but I suspect the tumors there have deteriorated the bones. The pain though is more the rest of the hip.
Also pain in the left upper leg and knee and left lower leg and the middle bottom of my left foot. The right leg has similar issue but not to that extent.
The second worse pain is my lower back and tail bone.
Then as we go up my spine I would think since over half the t10 is gone that would be pain but it isn't. Only if I'm out and about in a wheel chair or sit and sleep somewhere besides home.
There's also a huge pain in my lower left back ribs where they told me is a tumor going into my chest cavity. But it doesn't hurt all the time. Mom says she feels a bulge there now that used to not be there a month ago.
Then of course is the huge hunchback of Norte dame tumor of my left shoulder. But it only hurts around the edges and deep in the center.
Then once in awhile there is pain with the tumor on my head that goes through the skull pressing on my brain.
Other than those spots I don't really have pains much elsewhere except sometimes here and there.
I was wondering if there is something better for pain? So far though the only side affects to the pain pills is some tiredness. Also some constipation so I have to take mirilax daily.
As you can imagine it is almost impossible to walk. When the pain pills are working I can manage about 5 minutes. That's up from 2 minutes a couple weeks or so ago. But I've gotten unsteady so instead of walking around the house I go around the dining room table in one direction then switch to the other. Keeping one hand on my cane and the other on the table. Just started that yesterday but seems to work pretty good.
So I dunno if there is something better for pain. I know across the river they approved medical marijuana but there's no way I could smoke something. Plus I have no idea of the side affects. I've heard something about cannibus oil but I dunno if that helps with pain and what it's side affects are or where to get it. Sooo is there anything better than what I'm doing?
As far as treatment they got me on keytruda and abraxane. I lost my hair, some tiredness and mild stomach issues but otherwise ok with it. I get dose 3 Monday and the week of 7th go back to Houston for scans and see the doc. At least I'm going to try to make it. The trip is going to be very rough on me. Also I have no idea what will happen there. I know after first dose my ldh dropped 25% so I'm hoping that continues.
Artie
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- November 28, 2015 at 12:23 am
As far as a prescription stand point im not sure what can help your pain. Your doctor would know best. I do know that sometimes a good movie or finding a hobby that you enjoy can take your mind off of things. If Im down in the dumps I might play a computer game or watch a movie to take my mind off of things. Greg
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- November 28, 2015 at 12:23 am
As far as a prescription stand point im not sure what can help your pain. Your doctor would know best. I do know that sometimes a good movie or finding a hobby that you enjoy can take your mind off of things. If Im down in the dumps I might play a computer game or watch a movie to take my mind off of things. Greg
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- November 28, 2015 at 12:23 am
As far as a prescription stand point im not sure what can help your pain. Your doctor would know best. I do know that sometimes a good movie or finding a hobby that you enjoy can take your mind off of things. If Im down in the dumps I might play a computer game or watch a movie to take my mind off of things. Greg
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- November 28, 2015 at 1:23 am
Oh, Artie. I am so sorry for all your trouble and pain. Glad to hear about the drop in the LDH, though. Don't have any briĺliant ideas but maybe you could ask about a Tens Unit. It works by application of electrical impulses to the affected areas that then block the pain gate way….similar to acupuncture….which may not be a bad idea either! Marijauna is edible…if you decide to try that route. Hang in there, my friend. Many of us are rooting for you! Much love, celeste
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- November 28, 2015 at 1:23 am
Oh, Artie. I am so sorry for all your trouble and pain. Glad to hear about the drop in the LDH, though. Don't have any briĺliant ideas but maybe you could ask about a Tens Unit. It works by application of electrical impulses to the affected areas that then block the pain gate way….similar to acupuncture….which may not be a bad idea either! Marijauna is edible…if you decide to try that route. Hang in there, my friend. Many of us are rooting for you! Much love, celeste
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- November 28, 2015 at 1:23 am
Oh, Artie. I am so sorry for all your trouble and pain. Glad to hear about the drop in the LDH, though. Don't have any briĺliant ideas but maybe you could ask about a Tens Unit. It works by application of electrical impulses to the affected areas that then block the pain gate way….similar to acupuncture….which may not be a bad idea either! Marijauna is edible…if you decide to try that route. Hang in there, my friend. Many of us are rooting for you! Much love, celeste
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- November 28, 2015 at 1:37 am
Artie, I am sorry to hear you are having all that pain, good grief. You always amaze me with your resilient spirit and your matter-of-fact attitude. I don't have anything brilliant to add either, except I live in the state where marijuana is now legal and I know it comes in edible and oil form too and there are people who swear by it's pain and nausea relief capacities in cancer. I personally can't stand marijuana, going back to high school years, just not my thing, but I would not be surprised if it really does have medicinal value and if I got really desperate, I might look into the oil form of it. I am told it works wonders for childhood epilepsy, though I don't have evidence to back that up. You can actually ask your doctor about the prescription pill form of it which I think is called Marinol (they may look at you a little oddly but it's legal), or if you know anyone in Colorado, it's all over the place here now. I like Celeste's TENS unit idea too. I wanted to suggest maybe increasing your narcotics dosage and seeing if you can do that without it making you a zombie. I have chronic and worsening right side hip pain that has not shown up on PET CT as anything, but all I can do is take Percocet when it gets really bad and try to stay awake on it. Wish I had something more. Hugs to you!
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- November 28, 2015 at 1:37 am
Artie, I am sorry to hear you are having all that pain, good grief. You always amaze me with your resilient spirit and your matter-of-fact attitude. I don't have anything brilliant to add either, except I live in the state where marijuana is now legal and I know it comes in edible and oil form too and there are people who swear by it's pain and nausea relief capacities in cancer. I personally can't stand marijuana, going back to high school years, just not my thing, but I would not be surprised if it really does have medicinal value and if I got really desperate, I might look into the oil form of it. I am told it works wonders for childhood epilepsy, though I don't have evidence to back that up. You can actually ask your doctor about the prescription pill form of it which I think is called Marinol (they may look at you a little oddly but it's legal), or if you know anyone in Colorado, it's all over the place here now. I like Celeste's TENS unit idea too. I wanted to suggest maybe increasing your narcotics dosage and seeing if you can do that without it making you a zombie. I have chronic and worsening right side hip pain that has not shown up on PET CT as anything, but all I can do is take Percocet when it gets really bad and try to stay awake on it. Wish I had something more. Hugs to you!
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- November 28, 2015 at 1:37 am
Artie, I am sorry to hear you are having all that pain, good grief. You always amaze me with your resilient spirit and your matter-of-fact attitude. I don't have anything brilliant to add either, except I live in the state where marijuana is now legal and I know it comes in edible and oil form too and there are people who swear by it's pain and nausea relief capacities in cancer. I personally can't stand marijuana, going back to high school years, just not my thing, but I would not be surprised if it really does have medicinal value and if I got really desperate, I might look into the oil form of it. I am told it works wonders for childhood epilepsy, though I don't have evidence to back that up. You can actually ask your doctor about the prescription pill form of it which I think is called Marinol (they may look at you a little oddly but it's legal), or if you know anyone in Colorado, it's all over the place here now. I like Celeste's TENS unit idea too. I wanted to suggest maybe increasing your narcotics dosage and seeing if you can do that without it making you a zombie. I have chronic and worsening right side hip pain that has not shown up on PET CT as anything, but all I can do is take Percocet when it gets really bad and try to stay awake on it. Wish I had something more. Hugs to you!
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- November 28, 2015 at 5:28 pm
Sorry you are dealing with this on top of everything else.
I have heard good things about medical marijuana for pain. They key here is the form of marijuana. In this case I have heard good things about raw marijuana. By that I mean marijuana that has NOT been heated. In this state no matter how much you take you will never get a high because to activate THC, the psychotropic component of marijuana, you must burn or heat marijuana. If you have access to it or could get it you could juice the plant and the cannabidiols (CBDs) would help with pain.
One problem with access might be the amount needed, but you might look into this and see if CBDs from hemp might be helpful.
Hope this helps.
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- November 28, 2015 at 5:28 pm
Sorry you are dealing with this on top of everything else.
I have heard good things about medical marijuana for pain. They key here is the form of marijuana. In this case I have heard good things about raw marijuana. By that I mean marijuana that has NOT been heated. In this state no matter how much you take you will never get a high because to activate THC, the psychotropic component of marijuana, you must burn or heat marijuana. If you have access to it or could get it you could juice the plant and the cannabidiols (CBDs) would help with pain.
One problem with access might be the amount needed, but you might look into this and see if CBDs from hemp might be helpful.
Hope this helps.
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- November 28, 2015 at 9:13 pm
One word of caution about things like CBD oil. Make your own, unless you live in a state where it is legal. My understanding, which comes from "High Times" magazine, is that the sites that claim that CBD oil is legal in all 50 states are selling oil from industrial hemp plants, not marijuana. It's weaker, and they say it may actually contain solvents that cause cancer.
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- November 28, 2015 at 9:13 pm
One word of caution about things like CBD oil. Make your own, unless you live in a state where it is legal. My understanding, which comes from "High Times" magazine, is that the sites that claim that CBD oil is legal in all 50 states are selling oil from industrial hemp plants, not marijuana. It's weaker, and they say it may actually contain solvents that cause cancer.
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- November 28, 2015 at 9:13 pm
One word of caution about things like CBD oil. Make your own, unless you live in a state where it is legal. My understanding, which comes from "High Times" magazine, is that the sites that claim that CBD oil is legal in all 50 states are selling oil from industrial hemp plants, not marijuana. It's weaker, and they say it may actually contain solvents that cause cancer.
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- November 28, 2015 at 5:28 pm
Sorry you are dealing with this on top of everything else.
I have heard good things about medical marijuana for pain. They key here is the form of marijuana. In this case I have heard good things about raw marijuana. By that I mean marijuana that has NOT been heated. In this state no matter how much you take you will never get a high because to activate THC, the psychotropic component of marijuana, you must burn or heat marijuana. If you have access to it or could get it you could juice the plant and the cannabidiols (CBDs) would help with pain.
One problem with access might be the amount needed, but you might look into this and see if CBDs from hemp might be helpful.
Hope this helps.
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- November 28, 2015 at 9:11 pm
I used to be careful about who I said this to, but I'm past caring. For pain management: marijuana, marijuana, marijuana.
Opioids only dull my pain, and my wife says that when I take them I act like an a**hole. The surgeon gave me Vicodin after my very first surgery. I took the first few doses. It only dulled my pain, and made me irritable and moody. It was so bad even I recognized it. So after taking only something like 3-4 doses I ditched it and got some marijuana. It completely rid me of pain, kept my appetite up, no stomach upset, and my wife said I was much more pleasant to be around.
There's the added bonus of no overdose risk as well. And there are the studies that have found that some of the cannabinoids in marijuana may actually kill cancer.
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- November 28, 2015 at 9:11 pm
I used to be careful about who I said this to, but I'm past caring. For pain management: marijuana, marijuana, marijuana.
Opioids only dull my pain, and my wife says that when I take them I act like an a**hole. The surgeon gave me Vicodin after my very first surgery. I took the first few doses. It only dulled my pain, and made me irritable and moody. It was so bad even I recognized it. So after taking only something like 3-4 doses I ditched it and got some marijuana. It completely rid me of pain, kept my appetite up, no stomach upset, and my wife said I was much more pleasant to be around.
There's the added bonus of no overdose risk as well. And there are the studies that have found that some of the cannabinoids in marijuana may actually kill cancer.
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- November 29, 2015 at 1:37 am
Hi Artie!
I've been thinking about you and wondering how you are doing. Opiods and the Fentanyl patch are what I used, but I didn't like the side effects. I don't know about weed, etc. but I wouldn't count it out!!!!!! Why not? :))))
I'm so glad to hear that your LDH is down. For me, that has been a very good indicator.
Hey, Star Wars will be out soon. I will be thinking of you!!!!!!
Praying for you always!!!!
Terrie
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- November 29, 2015 at 1:37 am
Hi Artie!
I've been thinking about you and wondering how you are doing. Opiods and the Fentanyl patch are what I used, but I didn't like the side effects. I don't know about weed, etc. but I wouldn't count it out!!!!!! Why not? :))))
I'm so glad to hear that your LDH is down. For me, that has been a very good indicator.
Hey, Star Wars will be out soon. I will be thinking of you!!!!!!
Praying for you always!!!!
Terrie
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- November 29, 2015 at 1:37 am
Hi Artie!
I've been thinking about you and wondering how you are doing. Opiods and the Fentanyl patch are what I used, but I didn't like the side effects. I don't know about weed, etc. but I wouldn't count it out!!!!!! Why not? :))))
I'm so glad to hear that your LDH is down. For me, that has been a very good indicator.
Hey, Star Wars will be out soon. I will be thinking of you!!!!!!
Praying for you always!!!!
Terrie
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- November 28, 2015 at 9:11 pm
I used to be careful about who I said this to, but I'm past caring. For pain management: marijuana, marijuana, marijuana.
Opioids only dull my pain, and my wife says that when I take them I act like an a**hole. The surgeon gave me Vicodin after my very first surgery. I took the first few doses. It only dulled my pain, and made me irritable and moody. It was so bad even I recognized it. So after taking only something like 3-4 doses I ditched it and got some marijuana. It completely rid me of pain, kept my appetite up, no stomach upset, and my wife said I was much more pleasant to be around.
There's the added bonus of no overdose risk as well. And there are the studies that have found that some of the cannabinoids in marijuana may actually kill cancer.
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- November 30, 2015 at 1:01 am
Thank you everyone. I'm going to try and get medical marijuana in Illinois. They had in the news that Marion has started providing it. I really don't want to go the route of upping the dosage of these opieds. Not sure how but we shall see. If I can then I want to make it into the oil.
Thank you all for caring and understanding. Before this disease I would have thought someone was crazy wanting medical marijuana. The docs say they have all kinds of stuff to take our pain away. Now I understand.
Artie
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- November 30, 2015 at 1:01 am
Thank you everyone. I'm going to try and get medical marijuana in Illinois. They had in the news that Marion has started providing it. I really don't want to go the route of upping the dosage of these opieds. Not sure how but we shall see. If I can then I want to make it into the oil.
Thank you all for caring and understanding. Before this disease I would have thought someone was crazy wanting medical marijuana. The docs say they have all kinds of stuff to take our pain away. Now I understand.
Artie
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- November 30, 2015 at 1:01 am
Thank you everyone. I'm going to try and get medical marijuana in Illinois. They had in the news that Marion has started providing it. I really don't want to go the route of upping the dosage of these opieds. Not sure how but we shall see. If I can then I want to make it into the oil.
Thank you all for caring and understanding. Before this disease I would have thought someone was crazy wanting medical marijuana. The docs say they have all kinds of stuff to take our pain away. Now I understand.
Artie
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- November 30, 2015 at 1:26 am
HI Artie,
My husband just got his card – we live in CA so it isn't too challenging. It is weird though , the edibles are endless and to find the right one is a calibration challenge. They have lozenges that seem to help and cookies – anything of course that doesn't require smoking! It seems to help his pain, he has terrible chronic back and hip pain from previous accident and the melanoma treatment for some reason seems to have just inflamed it……………..so we are just starting this route.
Good luck to you, I think youy are very brave and your spirit is killer!
Rita
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- November 30, 2015 at 1:26 am
HI Artie,
My husband just got his card – we live in CA so it isn't too challenging. It is weird though , the edibles are endless and to find the right one is a calibration challenge. They have lozenges that seem to help and cookies – anything of course that doesn't require smoking! It seems to help his pain, he has terrible chronic back and hip pain from previous accident and the melanoma treatment for some reason seems to have just inflamed it……………..so we are just starting this route.
Good luck to you, I think youy are very brave and your spirit is killer!
Rita
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- November 30, 2015 at 1:26 am
HI Artie,
My husband just got his card – we live in CA so it isn't too challenging. It is weird though , the edibles are endless and to find the right one is a calibration challenge. They have lozenges that seem to help and cookies – anything of course that doesn't require smoking! It seems to help his pain, he has terrible chronic back and hip pain from previous accident and the melanoma treatment for some reason seems to have just inflamed it……………..so we are just starting this route.
Good luck to you, I think youy are very brave and your spirit is killer!
Rita
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- December 1, 2015 at 8:32 pm
Sigh. No medical card for me in Illinois. I'm a resident of Missouri not illinois which is a requirement.
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- December 1, 2015 at 8:32 pm
Sigh. No medical card for me in Illinois. I'm a resident of Missouri not illinois which is a requirement.
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- December 1, 2015 at 8:32 pm
Sigh. No medical card for me in Illinois. I'm a resident of Missouri not illinois which is a requirement.
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- November 30, 2015 at 9:08 pm
Hi Artie! It's so lousy you have to deal with all this pain. You might seriously want to consider trying acupuncture. If you're in the mood to watch a movie, consider "Escape Fire". There's a large section on acupuncture and pain for wounded vets. Big macho guys that now swear by acupuncture to manage pain and got them off the pain meds.
I hope you find relief soon. Ideally from your tumors disappearing!
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- November 30, 2015 at 9:08 pm
Hi Artie! It's so lousy you have to deal with all this pain. You might seriously want to consider trying acupuncture. If you're in the mood to watch a movie, consider "Escape Fire". There's a large section on acupuncture and pain for wounded vets. Big macho guys that now swear by acupuncture to manage pain and got them off the pain meds.
I hope you find relief soon. Ideally from your tumors disappearing!
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- November 30, 2015 at 9:08 pm
Hi Artie! It's so lousy you have to deal with all this pain. You might seriously want to consider trying acupuncture. If you're in the mood to watch a movie, consider "Escape Fire". There's a large section on acupuncture and pain for wounded vets. Big macho guys that now swear by acupuncture to manage pain and got them off the pain meds.
I hope you find relief soon. Ideally from your tumors disappearing!
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