I was recently in a car accident that added even more pain to my neck and back. Like any of us need more pain! I have been having problems with neck and pain even after having a ruptured disc replaced almost two years ago. I had a friend recommended me to research passion flower. The uses I found sound like it could be helpful. Any one else have any experience trying it?
Anyone use passion flower?
Started by
tazdad08
, Apr 02 2017 08:34 PM
3 replies to this topic
#1
tazdad08
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Posted 02 April 2017 - 08:34 PM
Diagnosed in September 2011. Tried one year of Sprycel. Had great response. Became undetectable in a few months. Changed to Tasigna hoping for less side effects. Self medicated myself down to 20% dose and held for 3 years before becoming detectable again. It has been a journey that has helped me realize what life is about! I am all about a balanced life. I firmly agree with my decision to lower my dose. What is life if you aren't living? Mine will never be the way it was, but it is going to be as good as I can make it! Drs PRACTICE medicine, we can guide our dr to help us with a better life! Don't settle until it's acceptable to you!
#2
kat73
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Posted 04 April 2017 - 09:22 AM
Sorry, Tazdad, don't know anything about passionflower, but I wanted to tell you I'm sorry you were in an accident and have more pain added in. That's so tough! I don't know if I could handle what you have had to. I've had stuff that's been temporarily painful, but not unrelentingly so, like you. Explore all the avenues (except opioids!) to get on top of that pain.
Dx July 2009 on routine physical. WBC 94. Started Gleevec 400 mg Sept 2009. MMR at 2yrs. Side effects (malaise, depression/anxiety, fatigue, nausea, periorbital edema) never improved. Kidney issues developed because of Gleevec. Switched to Sprycel 70 mg in Aug 2011. Above side effects disappeared or improved. Have been MR3.5 - 4.5 ever since. Two untreated pleural effusions followed by one treated by stopping Sprycel Jan 2017. After 9 weeks, PCR showed loss of MMR; re-started Sprycel at 50 mg and in 3 months was back to <0.01% IS. Pleural effusion returned within a couple of months, same as before (moderate, left side only). Stopped Sprycel 50 mg for 12 weeks; pleural effusion resolved. At about a monthoff the drug, PCR was 0.03; at 11 weeks it was 2.06 - lost CCyR? Have returned to 50 mg Sprycel for 3 weeks, intending to reduce to 20 mg going forward.
#3
tazdad08
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Posted 04 April 2017 - 08:10 PM
Thanks. I'm currently on opiods and definitely do NOT want to live on them. It's the only thing so far that has actually made my days more tolerable. Gping in 2 weeks for more radio frequency ablation on my neck. That works but only covers a very small area. And the nerves regenerate after 6 months or so. Then you start over again with the injections. Thanks so much for the kind words. Support from this group is priceless
Diagnosed in September 2011. Tried one year of Sprycel. Had great response. Became undetectable in a few months. Changed to Tasigna hoping for less side effects. Self medicated myself down to 20% dose and held for 3 years before becoming detectable again. It has been a journey that has helped me realize what life is about! I am all about a balanced life. I firmly agree with my decision to lower my dose. What is life if you aren't living? Mine will never be the way it was, but it is going to be as good as I can make it! Drs PRACTICE medicine, we can guide our dr to help us with a better life! Don't settle until it's acceptable to you!
#4
Buzzm1
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Posted 04 April 2017 - 09:00 PM
Tazdad08, speaking from experience, do everything you can to minimize any movement of your neck ... when the nerve roots in your neck are irritated they swell and any movement causes even more inflammation. It takes a significant period of time for the inflammation and resultant swelling to subside (months) even under the best of circumstances. What worked best for me was a customized ice pack, created by folding a hand bath towel into roughly 4" X 18* and soaking it with as much water as it can hold without dripping all over the place, putting it in a plastic bag, placing it on a cutting board, and then proceeding to freeze it while molding it to fit my neck comfortably as it froze. I always had two on hand so that I could replace one as it thawed out. I also did the same with beach towels that fit my shoulders and back like a glove. They provided far more relief for muscle cramps in my back and arms, caused by the compressed nerves in my neck, than any pain pills, or muscle relaxants. Periodically you will need to add more water as they do lose water to evaporation over time. Refreeze in the molded position before they thaw completely.
For the benefit of yourself and others please add your CML history into your Signature
02/2010 Gleevec 400mg
2011 Two weakly positives, PCRU, weakly positive
2012 PCRU, PCRU, PCRU, PCRU
2013 PCRU, PCRU, PCRU, weakly positive
2014 PCRU, PCRU, PCRU, PCRU (12/07 began dose reduction w/each continuing PCRU)
2015 300, 250, 200, 150
2016 100, 50/100, 100, 10/17 TFR
2017 01/17 TFR, 04/18 TFR, 07/18 TFR 0.0012, 08/29 TFR 0.001, 10/17 TFR 0.000
2018 01/16 TFR 0.0004 ... next quarterly PCR 04/17
At the earliest opportunity, and whenever possible, lower your TKI dosage; TKIs are toxic drugs and the less we take longterm the better off we are going to be ... this is especially true for older adults.
In hindsight I should have started my dosage reduction two years earlier; it might have helped minimize some of the longterm cumulative toxic effects of TKIs that I am beset with.
longterm side-effects Peripheral Artery Disease - legs (it's a bitch); continuing shoulder problems, right elbow inflammation. GFR and creatinine vastly improved after stopping Gleevec.
Cumulative Gleevec dosage estimated at 830 grams
Taking Gleevec 400mg an hour after my largest meal of the day helped eliminate the nausea that Gleevec is notorious for.
Trey's CML Blog - Stopping - The Odds - Stop Studies - Discussion Forum Cessation Study
Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt
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