Our beautiful daughter Suzie was first diagnosed in 2008 at the age of 31. On a clinical trial she responded well at first to high dose Glivec but with bad side effects...mainly oedema, massive fatigue, skin issues, and bone pain.
After a 3-log reduction within 9 months her numbers trended the wrong way and she was switched to Tasigna. Within 6 months she achieved PCRU but with side-effects still persisting.
Her main concern throughout was the restraint on becoming pregnant whilst taking a TKI.
As her parents, we were much more concerned with her maintaining PCRU with the hope of eventual dose reduction to alleviate side effects.
But Suzie persisted and after 2 years PCRU her onc. agreed to cessation of the TKI to enable her to try for a child.
With the the time- factor worry of being off drug, IVF was her only option. Incredibly it worked first time.
Within 3 months her PCR was 5 and rising.
This necessitated self-injected high dose interferon alpha for the duration of her pregnancy.. massive loss of energy but Suzie seemed to cope as she was achieving her dream.
She is now the mother of a magnificent,healthy and cute little boy and she seems never to have been happier despite now being back on Tasigna with its side effects.
Her PCR reached 16 by the time of the birth...very worrying!
But 4 weeks after re-starting Tasigna, PCR is back at 4 and we have all fingers crossed it keeps trending in the right direction.
We are so appreciative of the research which led to the miracle TKI treatment and the opportunity it has created for (almost) normal living.
We follow your inspirational stories closely and gain much support from you all. Particularly from Trey our CML guru.