[Paul58]

Pill / oral form of Velcade?

by Paul58 on Wed Jun 07, 2017 7:42 am

Hello everyone.

My latest lab results show that I am in complete remission, with my kappa/ lambda ratio better than it has ever been. So I'm quite encouraged! I am finishing 6 months of cyclophosphamide, Velcade, and dexamethasone (CyBorD) at the end of June, then some kind of maintenance therapy.

Since the Velcade has been so effective for me and I've had no side effects to speak of, the doc had suggested Velcade injections every 6 weeks as a maintenance. But my extended trips to West Africa for work make this a little impractical.

Apparently there is a pill form of Velcade, or something that works very similarly. I cannot seem to find the names of these fairly new drugs, and I'd like to research them during this month. Any help? It would be much appreciated!

[Gala]

Re: Pill / oral form of Velcade?

by Gala on Wed Jun 07, 2017 3:03 pm

Glad to hear that treatment has been working so well for you. I don't know about the Velcade pill, but another option would be to administer the injections yourself or have someone you know do that for you at home. My sister does her own Velcade imjections at home.

[Cheryl G]

Re: Pill / oral form of Velcade?

by Cheryl G on Wed Jun 07, 2017 4:04 pm

Hi Paul,

The "oral Velcade" is Ninlaro, which has the generic name ixazomib.

Ninlaro was developed by the same company that developed Velcade, and it has some chemical similarities to Velcade. However, it is not the same drug as Velcade, just like Revlimid is not the same drug as thalidomide (even though Revlimid and thalidomide are chemically similar).

Given that Ninlaro and Velcade are distinctly different drugs, it is unfortunate that some people go around suggesting that Ninlaro is "oral Velcade".

You can find discussions about Ninlaro, including experiences using it as maintenance therapy, in this list of forum threads about it:

https://myelomabeacon.org/forum/search.php?keywords=ninlaro+ixazomib&terms=any&author=&sc=1&sf=titleonly&sr=topics&sk=t&sd=d&st=0&ch=300&t=0&submit=Search

Gala's suggestion for self-injecting Velcade is a good one. Personally, I'm a proponent of not switching to different drugs until you've exhausted the usefulness of the drugs you've already taken. So staying on Velcade would appeal to me, and self-injecting would allow you to do that.

There are a couple of forum threads about self injecting Velcade:

https://myelomabeacon.org/forum/self-injecting-velcade-my-experience-t3893.html
https://myelomabeacon.org/forum/study-velcade-self-administration-t6602.html
https://myelomabeacon.org/forum/self-injecting-velcade-anybody-else-t4293.html

Good luck!

[Paul58]

Re: Pill / oral form of Velcade?

by Paul58 on Fri Jun 16, 2017 3:36 pm

Cheryl and Gala,

Thanks to both of you for your informative answers to my question.

I do like the idea of sticking (pun intended) with the Velcade, since it has worked so well for me up until now. I kind of hate the thought of injecting myself, since I've always received the Velcade as an IV 'push' at the same time I receive the other drugs by infusion. But the practicality of it makes sense.

I just have to find out if the Velcade needs to be refrigerated or kept at a stable temperature while I travel out to the village where I work. But that won't be until late September, so I have time to figure it out.

Thanks again and all the best to you and yours,

Paul