12 replies to this topic

[tazdad08]

What does everyone do for severe pain relief? I am on Tasigna, been on Sprycel, and am battling severe back pain. I have been on Hydros for almost 2 years now. They do knock the edge off a little but not enough. I have RFA (radio frequency ablassion) every 6 months to a year. That process uses radio waves via 16 gauge needles to burn nerves. I started Cymbalta 6 weeks ago.... havent really noticed any help yet. My back is to the point of having to have the RFA again so I'm not sure if I am giving it a fair evaluation. Insurance will only pay for 4 discs to be done. That helps that particular spot tremendously but does nothing for the rest of my back.

[r06ue1]

Have you tried the McKenzie Method?  

 

My family doctor sent me to a doctor that specialized in this for a slipped disc in my lower back (improper sitting position at work) and while it took a long time (four months) eventually it paid off big, no more slipped disc and no more pain and they teach you how to "self medicate" so you never have to go back and see them in the future (unless it is a totally new problem).  

[tazdad08]

Have you tried the McKenzie Method?  

 

My family doctor sent me to a doctor that specialized in this for a slipped disc in my lower back (improper sitting position at work) and while it took a long time (four months) eventually it paid off big, no more slipped disc and no more pain and they teach you how to "self medicate" so you never have to go back and see them in the future (unless it is a totally new problem).  

I have not but I will research it right now. I do not want to go to stronger pain meds knowing that I will be in some amount of pain caused by the TKI's for the rest of my life.

[Billie Murawski]

Hi Taz,

 I'm on Cymbalta 90mg  and I swear by it. If I miss a dose the next day I really feel it all over. Maybe you need to give it a little bit more time.I was originally put on it for depression and then I learned it was an anti-inflammatory too. After 9 years I think it's a better anti-inflammatory but anti-depressants take a good 8 weeks to really start working. Good Luck Billie

[tazdad08]

Hi Taz,

 I'm on Cymbalta 90mg  and I swear by it. If I miss a dose the next day I really feel it all over. Maybe you need to give it a little bit more time.I was originally put on it for depression and then I learned it was an anti-inflammatory too. After 9 years I think it's a better anti-inflammatory but anti-depressants take a good 8 weeks to really start working. Good Luck Billie

I am only taking 30mg. I have upped it 60 two different times and each time it seems effect my bladder. The dr says there is no known link to that the first time it happened and asked me to try 60 again. Within two days i felt the same again. Slow urine flow and the feel of needing to pee all the time. 2 minutes of using restroom i felt like my bladder was full again. Did you experience anything like that Billie? I assume that 30mg may be too low a dose to help much with the pain. A little TMI but this whats this board is all about. lol. And I did have the good ole prostate test and all was well.

[Alajazz]

Taz, your bio statement struck a chord with me: "What is life if you aren't living". My experience over many years with doctors addressing pain and suffering (in contrast to their approach to a specific disease like CML) is to send you off to take a prescription drug like you are apparently doing. In the past year I changed course and decided to try medical marijuana. Now I'm a believer though was skeptical at first. It takes some studying and experimenting to find what works for you but in my own experience - so worthwhile. Hoping you find the relief you are looking for ..... Jim

[tazdad08]

Taz, your bio statement struck a chord with me: "What is life if you aren't living". My experience over many years with doctors addressing pain and suffering (in contrast to their approach to a specific disease like CML) is to send you off to take a prescription drug like you are apparently doing. In the past year I changed course and decided to try medical marijuana. Now I'm a believer though was skeptical at first. It takes some studying and experimenting to find what works for you but in my own experience - so worthwhile. Hoping you find the relief you are looking for ..... Jim

I guess my bio statement wasnt as positive as I meant it to be. I'm a very upbeat person and love my life.... I have taken some criticism from a couple people on these boards for refusing to take my Tasigna per dr orders. I adjust my dose to improve my life. I am on one pill a day instead of two. Was on 3 pills a week but became detectable and had to increase again. I would definitely try medical marijuana if was legal in TN. 

[Buzzm1]

Taz, your bio statement struck a chord with me: "What is life if you aren't living". My experience over many years with doctors addressing pain and suffering (in contrast to their approach to a specific disease like CML) is to send you off to take a prescription drug like you are apparently doing. In the past year I changed course and decided to try medical marijuana. Now I'm a believer though was skeptical at first. It takes some studying and experimenting to find what works for you but in my own experience - so worthwhile. Hoping you find the relief you are looking for ..... Jim

Good to see you posting Alajazz/Jim.  Was wondering how you were doing on Gleevec 300mg.  There is a Medical Marijuana thread if you would care to add your experience: http://community.lls...arijuana/page-3

[kat73]

Tazdad - Read Healing Back Pain, by Dr. John Sarno.  You will think it's hooey.  Everybody does, until they buy in to it, and then they realize it works.

[Billie Murawski]

I am only taking 30mg. I have upped it 60 two different times and each time it seems effect my bladder. The dr says there is no known link to that the first time it happened and asked me to try 60 again. Within two days i felt the same again. Slow urine flow and the feel of needing to pee all the time. 2 minutes of using restroom i felt like my bladder was full again. Did you experience anything like that Billie? I assume that 30mg may be too low a dose to help much with the pain. A little TMI but this whats this board is all about. lol. And I did have the good ole prostate test and all was well.

Hi Taz, I do get frequent uti's but not as bad as when I was on Gleevac. I never thought about it being cymbalta. If it gets bad I call my pcp and she prescribes an antibiotic for me which starts working right away. After nine years I am sick and tired of cml and all the side-effects of Sprycel, I take 20mg of Sprycel and I still get pe's I think I have one right now, this morning I really had trouble

breathing so I'll lay off the Sprycel for a few days and make sure I take my water pills. I had a chest x-ray about 3 weeks ago and I had a small pe. So I'm told to watch it and if it gets worse call onc. So if I'm gasping for breath call them, which is how I ended up going to the hospital by ambulance I needed oxygen. I was in the er several hours they did a bunch of tests, told me I had a large pe. A couple hours later I guess they found a lung specialist who wanted overtime and he drained 2 liters of fluid from my right lung. So I was off Sprycel for 6 weeks, my onc even sent me to Pittsburg to see another onc. They both agreed the 6 week break from S would be what I needed.I have been undetectable for 6 years so I have just learned to listen to my body. I took a water pill and drank cranberry juice and took my blood pressure pills and I feel much better now. I have to have surgery on my leg Monday so I sure as hell don't need a pe right now. I can't take Gleevac and I'm not a candidate for Tasigna so I just work with what I got. But I do see my Onc and cardiologist on a regular basis.  Good luck Billie 

[beno]

I am only taking 30mg. I have upped it 60 two different times and each time it seems effect my bladder. The dr says there is no known link to that the first time it happened and asked me to try 60 again. Within two days i felt the same again. Slow urine flow and the feel of needing to pee all the time. 2 minutes of using restroom i felt like my bladder was full again. Did you experience anything like that Billie? I assume that 30mg may be too low a dose to help much with the pain. A little TMI but this whats this board is all about. lol. And I did have the good ole prostate test and all was well.

My wife had bladder issues while taking Cymbalta also.

[Billie Murawski]

My wife had bladder issues while taking Cymbalta also.

Hi beno, well that's interesting I went on Cymbalta 3 weeks after my dx, I was on Gleevac then. The utis were a lot worse on Gleevac and when I switched to Sprycel I went for about 2 years without one but now I'm starting to get them again. Crap, it seems that we're damed if we do and damned if we don't. I think I'll go cleanse my body with wine. I take 2 bp pills a day and a water pill so I feel the urge quite frequently. I was pretty sick a couple times and the doc said I could only get out of bed to go to the rest room, as the nurse was putting an IV of saline in my arm. I just looked at them both and I said you got to be kidding me. Just remove my bladder right now. They had no sense of humor at all.

[Gail's]

Geez, Billie. What a pain to have frequent utis. I had the worst one of my life while on gleevec but haven't had a repeat since I'm now on sprycel. When we're given ridiculous advice (like you're going to get any rest at all with a uti!), I just want to give them my pain for about an hour so they understand how it really works. Glad you figured out how to handle the PE. Hope your leg surgery goes well.