Posted on: Mar 17, 2018 04:11PM - edited Mar 17, 2018 05:39PM by cowgal
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Posts 1 - 14 (14 total)
Mar 17, 2018 05:53PM AmyQ wrote:
This is amazing news. I hope it's released to those of us suffering with lymphadema in the very near future.
Thanks for sharing cowgal.
Mar 17, 2018 07:05PM SpecialK wrote:
This study only used patients with lower limb lymphedema, many of whom are primary lymphedema patients, not secondary like most of us. I am certainly hopeful that what has been learned in the study can be extrapolated for treatment of surgery induced LE. My BS has long thought that LE stems from inflammation - and has discussed this in the pastwith my MO as well since they share some patients with LE, and my bi-lat LE improves considerably with an anti-inflammatory diet. I am glad that they have realized that the study drug, meant for another use originally - like the glaucoma drug that doctors realized restores hair - can potentially provide relief for us - progress!
Mar 18, 2018 11:36PM - edited Mar 18, 2018 11:50PM by hugz4u
Stanley Rockson famous lymph guy is very hopeful . I heard him at a conference a couple years ago and he was telling us about mice growing lymph vessels on meds. It's down the pipeline.....just don't know when.. or the side effects. I don't really want to grow a third ear or a extra belly button. A new non lymphedema hand and arm might be ok! I wonder how his studies are going? Anyone heard? I bet Binney knows. Hey Binney where are you? He seems very passionate about his work.
Edited :oh dear. I just opened up the link. That's a pic of Stanley. I'll just go and read the info now. Thx for posting link.
Edited. Just read. Hum I wonder what exactly he is doing? He may have a couple thoughts in mind. Anyway he is such a nice guy. Answered all our questions at the conference. He seems to love the work he's in.
Mar 27, 2018 08:46PM anna4969 wrote:
I really wonder what drug they are referring to in this study. I know that Dr. Rockson was doing some sort of study with Ketoprofen at some point. Not sure if he is still working on that one. I can tell you that after reading about it last year, I asked my MO about trying a Ketoprofen regiment for my lymphedema that has been quite problematic for 6/7 years. He had the pharmacist call Stanford and inquire on what dosage Dr. Rockson was giving his patients, but they would not reveal this. So he put me on a daily low dose of Ketoprofen in June of last year, and I must say that it is the first time in 6/7 years that I have gotten relief from the pain I constantly had in that arm. My pain is not completely gone, but much improved. It really has made a huge difference. I am grateful for the dedication Dr. Rockson has for this rotten side effect of cancer treatment.
Mar 27, 2018 10:07PM - edited Mar 28, 2018 06:58PM by SpecialK
The study drug is ubenimex (also known as bestatin), in the ULTRA trial.
Mar 28, 2018 03:51PM vlnrph wrote:
For Anna, since ketoprofen is an NSAID like ibuprofen/Advil=Motrin, it's not surprising that you would get pain relief along with the anti-inflammatory effect. You might even experiment with an OTC product at some point, especially if it would be less expensive. Be sure you take any of these meds with food to protect the stomach and also ask your doctor about periodic lab work in order to observe kidney function.
Mar 29, 2018 05:49PM anna4969 wrote:
There likely is something else in Ketoprofen that is assisting or making the anti-inflammatory benefits more effective in this particular NSAID, as I was taking a fair amount of prescription Ibuprofen and prescription Naproxen, and was not experiencing the same benefits with either or those that I am with the Ketoprofen. So there is something else there. I certainly am mindful of the stomach issues. We are staying on top of kidney lab work every 6 months. You are very correct in the cost difference as my prescriptions of Ibuprofen and Naproxen are minimal, not so with the Ketoprofen.
Mar 30, 2018 12:03PM - edited Mar 30, 2018 12:03PM by hugz4u
Virnph,can naproxen cause swelling I thought someone told me it does and is not good for us lymphers. If it's a antinflamarory shouldn't it take swell down? I'm confused. Just wondering because Anna noticed that naproxen was not as effective as keto.
Apr 1, 2018 10:46PM vlnrph wrote:
Some people do get swelling, particularly in the lower extremities, from NSAIDs which seems to be related to sodium retention. Since the kidneys are involved in electrolyte balance, it's important to keep an eye on their function via labs as Anna is doing especially when one is using this class of drugs long term.
Hugz question sent me into a pharmacology review session. The chemical structure of ketoprofen is unique so perhaps it has better ability to block prostaglandin production. It was interesting in the article that those scientists are looking at the role of leukotrienes in the inflammatory process and how inhibition of their effects may be the key to relief from lymphedema.
My perspective has usually been from the physical 'plumbing problem' point of view - normal drainage is not taking place because nodes were removed. Having a medication versus our current mechanical solutions would be great!
Oct 19, 2018 10:14PM cowgal wrote:
Here's an update on the study with Ketoprofen: http://med.stanford.edu/news/all-news/2018/10/anti...
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