You are here

Elusive zero

Just at the moment, due to side effects, I am off all TKIs - feel OKish health wise, but scared. Diagnosed in Sept 2001 - so coming up for 11years as a CMLer. In all those years I havent managed to hold the elusive zero for more than one PCR test, and that was probably a mistake ! Most recently I was taking Nilotinib, having slowly 'galloped ' through interferon, gleevec and dasatinib over the previous years.

My results, since 2009 have tended to be in the low 1. somethings, down to 0.004 ish, and I have bobbled between them for 2 years now. I havent taken any TKIs since May and the PCR is rising, but slowly, its being checked ever 3 weeks. Saw consultant yesterday and probably will go back on to Nilotinib in September, again being very carefully monitored.

So this CML journey continues, and always has surprises, slowly slowy seems to be the way for me. Never been able to tolerate any high dose of any TKI, yet I have managed to get to a low sustainable level, and keep the 'old dragon' in control.

Thinking of all the new CMLers, just starting on this strange journey, and hoping my long trek will give them hope for the future.
ATB Pennie

Hey Pennie,

Sorry to hear that you are still struggling with the TKI's. Are you feeling better now you are on a break?

I just wanted to say Hi (we must meet up again for coffee) and to wish you all the best. Thank goodness your PCR remains fairly low but if you go back onto Nilotinib again in Sept I hope it treats you better.

Take care and speak soon
Lynn

Hi Lynn I think I have replied on the 'girls' group, but it might have got lost on the way!! Brain not in gear really. Speak soon I hope
Pennie

Hi Pennie,
Sorry to hear you are having problems still. We seem to be so alike, although my counts are high, hence the wait for a BMT! Its good they are keeping a close eye on you.
Im just wondering if your consultant has considered Ponatinib or Bosutinib for you? It may be worth asking. The other thing, have they tried a dose reduction to see if you are able to tolerate the TKI'S any better whilst still maintaining a good response? You might have said all of this before in previous mails, so forgive me if I have forgoten (a thing that happens often)! Im still on low dose Interferon & alls well with that, ironic that Im ok with this & not the TKI'S!! Who would have thought it!!

Wishing you all the best as ever.

Yep tried dose reduction, and changing around dasatinib/nilotinib. Having time out is OK but scary. I cant tolerate Interferon, but people who can often get decent reduction in PCR hope this happens for you as you wait for the transplant. Ponatinib and the trial at HH both being investigated by my consultant. So the drawer of options still has some contents!

Hoping all goes well for you with the transplant.
Pennie

Hi Pennie

Just wanted to say hello and it was nice to hear how you are doing. It is so nice being off TKI's. I found it quite scary to realise how bad I felt on them. Take care and I know that you will do what your doctor says and what is best for you.

regards
Susan