Jakavi a Janus kinase inhibitor ; does anyone know about this Med for the treatment of CLL

[LovecuresCLL]

I met someone in the waiting room at MDA and he told me about this medication . He has CLL was Watch a wait a couple of years ago 2011 on this since 2013. He is on a clinical trial.

It’s approved for myelofibrosis, but now being used for CLL.

[cajunjeff]

I think that's the same thing as ruxolitinib and it has shown some promise in helping with fatigue symptoms for those with cll. I assume if its reducing fatigue symptoms, its also killing cll cellls.

This might be the trial the person you spoke with is in:

ncbi.nlm.nih.gov/pmc/articl...

My doctor is among this listed as an author, I'll ask him about it when I next see him. The more tools in our doc's toolbox, the better.

[LovecuresCLL in reply to cajunjeff]

Exactly what the patient said. He is joining health unlocked to give us his insights.

[Tommays56]

Hi L

Yes Jakafi very expensive at 13,000 a month

After a lot of back and forth with my specialist I was put on it from December 15th 2018 until May 2019 when I stopped because of the side effects

I was able to try it because my specialist has a research relationship with MD Anderson

The theory is it helps with fatigue for about 50% of the patients and I did get some pretty good results but over time my red count was dropping and the fatigue starting coming back

In addition my gums started bleeding pretty bad from any kind of oral care

So it gave a good idea about side effects of treatment drugs without doing any long term damage and i will continue to wait for a safer treatment because in my case without some careful plan to cycle on and off the drug it was not a solution

[LovecuresCLL in reply to Tommays56]

Yes he said it helped his fatigue tremendously . No side effects so far for this person and has been on it a couple of years.

[bkoffman CLL CURE Hero]

Can be very helpful with fatigue and may have some mild anti-CLL activity, but is very expensive, off label and can cause plethora of side effects in some patients.