5 replies to this topic

[survivor77]

I've been ABL/PCR for just over 2 years.  0 copies.  I had heard that some people are able to remain in remission.  I stopped taking sprycel Nov. 18th.  my blood work was taken 3 weeks after break.  All levels were the best they've ever been.  Then came the molecular test.  2.32 copies. I was told to go on Tasignia but I thought I could do it with the help of protein shakes, probiotics, graviola, bilberry, extra vitamin c, and a multi-vitamin that is loaded with greens and I smoke marajuana.  I had read on the recent developements of cannaboids and their abilitiy to kill cancer cells while leaving healthy ones alone.  Also wearing hematite and flourite metals and stones for healing.  I've been researching since being diagnosed in 2004.  I have been on Gleevec for 5 1/2  years and Sprycel for 2 1/2 years.  I was loosing my mind and needed to take a break.  Praying to God that all that work we've done and the long remission, that we could do it.  Unfortunately I am not one of those people at this time that can go off TKI's.  I am so sad and scared to go back to side effects.  Both drugs just basically stink.  Has anyone else been in this situation?

[Johnc]

Survivor77

Sorry to hear about yours situation, although getting the copies back to 0 is most likely achievable.  Can you go on a minimum dose of 20 mg of Sprycel and hopes that your side effects go away?

We commend you for trying to get off the TKI, and you did it while being monitored.  Why did the Onc want you to go on Tasigna?

Johnc

[survivor77]

I went off my meds, then told my doctor.  I have depression and was having suicidal thoughts.  I thought to myself, I've got to feel like a human being again.  so I just stopped taking them and felt great.  I could do anything and I'm 46.  I have long blond/grey hair.  I have a beauitiful family.  I was losing touch with that and was just getting comsumed by side effects and mental effects.  When I started out on Sprycel, I went into complete remission within a few months.  Gleevec took me to 6 or 7 copies.  Then I got a new doctor, mine went to Sloan, and she started me on Sprycel.  I felt so much better.  Then after 6 months it just went down hill.  My side effects made me feel like I was hung over 3-4 days per week.  I'd have to call my mother over to get the kids to school.  I was so sick, I could not make them breakfast.  Doctor lowered my dose to 70mgs.  I still felt bad and needed pot just to get through the day.  Now the doctor thinks it's best for me to try Tasigna.  I'm going to start on 200mgs. tonight. I felt really great but I must say I'm scared but these drugs have saved my life.  And I was one of the first women to give birth to a Gleevec baby back in 2005.  Now she is 7 and a real athlete and healthy and beautiful.  Wow.  Sorry, I'm all over the place.  I just need to stay grateful and I'm so grateful that there are meds and there are choices in being able to stay alive and enjoy what I can while I can.

[Trey]

Life is better when kept simple.  Take the Tasigna and live for your family. 

[CallMeLucky]

Forgive me if out of line, but it sounds like you might benefit from speaking to a therapist.  You are going through a tough time, managing side effects can be grueling.  Sometimes it helps to talk it out.

I hope you feel better soon.

[survivor77]

Thanks.  I already do go to therapy and am on meds for depression.  I just took my first Tasigna pill before bed.