Study finds first possible drug treatment for lymphedema

Options

Comments

  • marijen
    marijen Member Posts: 3,731
    edited March 2018

    Thank you Cowgal! If you go back in to edit you can hit the return key after you post the link and it will be live so that others can just click on.


  • cowgal
    cowgal Member Posts: 833
    edited March 2018

    Sorry. It has been edited so people can just click on it. Thank you marijen.


  • AmyQ
    AmyQ Member Posts: 2,182
    edited March 2018

    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.

    Amy

  • SpecialK
    SpecialK Member Posts: 16,486
    edited March 2018

    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!

  • marijen
    marijen Member Posts: 3,731
    edited March 2018

    No worries Cowgal, thanks for fixing. I'm sure mine came from inflammation after getting delayed breast cellulitis after radiation. I was ok up until about six weeks after radiation and then boom!

  • hugz4u
    hugz4u Member Posts: 2,781
    edited March 2018

    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.

  • anna4969
    anna4969 Member Posts: 86
    edited March 2018

    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.

  • SpecialK
    SpecialK Member Posts: 16,486
    edited March 2018

    The study drug is ubenimex (also known as bestatin), in the ULTRA trial.

  • vlnrph
    vlnrph Member Posts: 1,632
    edited March 2018

    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.

  • hugz4u
    hugz4u Member Posts: 2,781
    edited March 2018

    Vlnrph. I do value your opinion thx. Your in drug industry if I remember and always so helpful.

  • anna4969
    anna4969 Member Posts: 86
    edited March 2018

    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.

  • hugz4u
    hugz4u Member Posts: 2,781
    edited March 2018

    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.

  • vlnrph
    vlnrph Member Posts: 1,632
    edited April 2018

    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!

  • cowgal
    cowgal Member Posts: 833
    edited October 2018

Categories