Ukoniq withdrawal

[Luverboy007]

Does anyone have information on Ukoniq being pulled from the market and what treatments are now being recommended in its place?

[SofiaDeo]

Studies indicate there is a possible increased risk of death. When study drugs start to show worse outcomes than the control group, the drug studies are generally terminated. This occurs with many cardiac meds, for example.

Even if a study is for X amount of years, there is intermittent analysis of data. If intermittent analysis indicates death or severe side effects, a study may be discontinued and the drug no longer tested. It's a possibility a drug may still continue to be used (like chloramphenicol) but it would be as a last resort in certain, specific cases, instead of initial treatment.

[studebaker in reply to SofiaDeo]

Why was Chloramphenicol treatment discontinued? My son was treated with it for bronchitis.

[SofiaDeo in reply to studebaker]

The treatment isn't discontinued, just reserved. It has a rare side affect, the potential to cause aplastic anemia. When it first came out, the manufacturer was pushing it to be a front line drug. Then reports of aplastic anemia started popping up (this was back in the 1950's)

jamanetwork.com/journals/ja...

So in the US, at least, it is not a front line agent. The bone marrow effect seems related to duration of therapy, so short term use has less risk.

sciencedirect.com/topics/ag...

[Luverboy007 in reply to SofiaDeo]

Thank you, very helpful.

[cllady01 Former Volunteer]

Here is the statement from TG Therapeutics April 20, 2022:

hematologyadvisor.com/home/...

And a prior statement of investigation from the U.S. FDA (Feb. 03, 2022):

fda.gov/safety/medical-prod...

[Luverboy007 in reply to cllady01]

Thanks for this. I’ve been on it for the last year and gone into remission so am wondering whether there is an alternate drug or not? Just my luck it gets pulled. I have nodal MZL.

[cllady01 Former Volunteer in reply to Luverboy007]

Here is a site for you to read up on what is being done in the area of MZL treatment.

We are mainly a CLL forum, so our knowledge is limited in regard to MZL (well, limited more than for CLL- we are not medically trained for the most part).

This site link should help you to educate yourself to a degree and be able to ask some educated questions of your Dr. (but, I'd suggest you also ask any questions you have of your Drs.--not just educated questions).

There does seem to be a lot of research into treatments and you will note the varying kinds of MZL that are being seen and treated.

Best wishes for a long remission--I see Rituximab is one treatment that is also used with CLL patients and others that are being explored (trialed) for MZL are used for CLL also.

lymphoma.org/wp-content/upl...

[Luverboy007 in reply to cllady01]

Thank you.

[Luverboy007 in reply to cllady01]

Thank you.

[SofiaDeo in reply to Luverboy007]

Have you been told you will no longer have access to it? It may be available, albeit only to those already taking it successfully. Campath was pulled from the market, but as a former patient I was eligible to obtain it for treatment. It had been off the market for mmm 6 years? when I did the repeat.

[Luverboy007]

Had a consultation with my oncologist this morning and was told it will no longer be available after my current supply runs out. Am now exploring other options since it was working well for me and gave me no real side affects either. Thanks.