4 replies to this topic

[Melanie]

Hello everyone! Got a new plan...will be starting on Bosutinib as soon as my ANC return to normal. Had a visit with Dr Cortes at MD Anderson. After BMB results showed minimal response to the low dosage of 125 mg of Tasigna and the supplement of Neupogen shots to maintain my ANC above.5 that I was on, we have determined to try Bosutinib, since it has shown to be less myeloid depressive. New plan is to start on 400 mg of Bosutinib, slightly less than the 500 mg normal dose, once my ANC are above 1.0. Currently ANC are .4, but should be better soon now that I'm on break. Once I've started Bosutinib, will do weekly labs, supplement with Neupogen shots as needed, and test at 3 and 6 months for response levels. Interesting to note that he doesn't want me to reduce dosage or take drug break if my ANC drop again, but to start shots again. That's not the normal protocol and need to inquire about his reasoning on that more.

If this fails, then will likely need SCT. Ponotinib will probably not be an option since it has not proven to be less myeloid depressive. Dr. Cortes will coordinate with my local Dr here in Arizona.

So...I come to ask what people have experienced on Bosutinib. I've read all the data, but would love to hear from real people.

Will enjoy my break from drugs and shots, along with the beautiful fall weather we're having. I'll take this time and get started exercising again and pray that Bosutinib is the drug for me.   Praying always for everyone here and hope everyone is enjoying the Fall!

Best to all!

Melanie

[scuba]

Hi Melanie,

Your meeting with Dr. Cortes was interesting. In my case he did not want me to take Neupogen at all (despite my ANC < 0.1) and instead wanted me to follow a drug break/re-start protocol. Perhaps he sees something in your BMB that has him pursuing a different path. It just re-confirms that each of us is unique in CML treatment and the experts have seen enough variation in order to customize. It's good that there are several drugs to try. You're in good hands,

Michael

[rct]

mbrown2010 wrote:
 Interesting to note that he doesn't want me to reduce dosage or take drug break if my ANC drop again, but to start shots again. That's not the normal protocol and need to inquire about his reasoning on that more.

My Mrs has been on neupogen for more than 4 years now.  Druker even agrees to keep on the TKI that works and use the stim shots.  It's a pretty normal protocol if they don't see any other options.

rct

[Melanie]

Scuba, I was thinking of you when we were discussing dosage and shots. I believe that it's the lack of response that he's seen in my BMB that has motivated his decision.  My cytogenics came back with 19 of 20 cells PH+; Fish at 52%; and PCR at 12.77%. These results after actually being able to stay on some level of dosage (from 3/4- 1/4) for over 6 months.

Your right about each of our CML treatments can and should be unique and am happy to have found experts that recognize this and treat accordingly. I'm anxious to try this new drug and see what it can do for me and very grateful that there's another one to try. Hopefully I can share good experiences on it so it will offer hope for others.

Melanie

[Melanie]

Rct...I was also thinking about your wife when we were discussing the neupogen shots. It's comforting to know that there's others doing the same thing. After reflecting on this a bit more, I realize in my case, it's more important to get some drug in me and keep it coming to fight the disease than to take drug breaks. I'm just grateful there are neupogen shots to offset the neutropenia, otherwise it could get a lot worse. If this new drug works and I have to do shots the rest of my life, then so be it...it's still better than the alternative. Thanks for sharing your wife's story, I've found it very encouraging.

Melanie