Well, it has been one year. The time has flown. I saw the hematologist yesterday and my PCR is 0.0002, 3 months ago 0.0003. I am very happy but yet was hoping to be pcru. With a pcr at this level, is it reasonabe to be hopeful of a pcru? The nurse was quite sarcastic saying you should be happy with this. I am happy and I know that many others struggle with more problems than I. I am so grateful for the response that I have had and wish this disease away on all of us. Just curious though.
1 year since diagnosis
Posted 22 January 2011 - 02:49 PM
What I would give for .0002 after a year!!! I'm almost 2 years into this and nowhere as close as you are. That number sounds pretty darned close to PCRu to me!
Posted 22 January 2011 - 04:06 PM
Sounds great. I have been on and off gleevec and now tasigna due to side effects. My last pcr was .008047..good...but not like yours...I will get there in time...Which medication were you taking and at what dosage? Any side effects or problems with blood counts along the way?
Posted 23 January 2011 - 12:48 PM
I have been taking Gleevec 400 mg since diagnosis. I have had very little myelosuppression, only a hemaglobin slightly below low normal. I have been very lucky and have not had to take any breaks. The last month or so I have not felt as good but have been sick off and on with colds. I do get side effect such as fluid retention around my eyes, muscle and joint aches and tired. I regret putting up this post now, I am very fortunate to where I am at in a year and know that others here have had a more challenging time with side effects.
Posted 23 January 2011 - 04:41 PM
I don't think you should feel bad about posting your results. Personally, I think they're fabulous and I'm glad for you!! I am 2+ years since dx, and my last PCR was .267 I think. (I've been on Sprycel for over a year.) I'm scheduled to get results on a PCR done several weeks ago this Wednesday when I see the oncologist at U of MD in Baltimore. I'm anxious to see what it is, because next Monday, I'm going to have the opportunity to have an evaluation/consultation with Dr. Cortes at MD Anderson in Houston. I will be there for three days getting tests, and I'm actually excited at the opportunity, although that might sound strange when you consider that a BMA is definitely on the schedule!!!!!!!!!!!!!!!
In any event, it will be interesting to see why I've not been able to achieve PCRU even though I feel pretty darn good all the time, and my regular counts are great!
I'll follow up when I return if there's anything really interesting to report.
In the meantime, enjoy your good news!!
Posted 23 January 2011 - 05:01 PM
Do not feel bad about posting anything. We have questions that sometimes bother us until somebody sheds a little light on the subject. That is what we are all here for. Your doing good after a year. It took me 3 years to get to PCRU, and now its 7 years that I have been able to keep it undetected.
Everybody is different. Some people do just fine just getting their cytogentic remission, and stay like that for years.
I always pray that my TKI keeps working so I do not have to switch and get used to a new one. I started Gleevec 400mg. Oct. of 2000, and I am still on the same medication and dose today. May you continue to do well.
Posted 23 January 2011 - 05:06 PM
Hi, Janekaye . . .
I will be interested in hearing about your appointment. Seems like your timeline and numbers are quite similar to mine.
Posted 23 January 2011 - 08:50 PM
Janekaye, please do let us know how your appointment goes!! I wish you a great appointment and all the best!!
Posted 23 January 2011 - 08:52 PM
I really appreciate the reassurance!! Even after a year, I still have fearful times especially around my appointment times. Going to the specialist and the cancer centre, just all brings it back to reality. Thank you!
Posted 24 January 2011 - 01:17 PM
Wishing you the best of consultations, janekaye, and wishing the doctors superior detective work finding the solution. May you be writing us soon with great news!
Be alert, but not overly concerned.
• Dx Oct. 22, 2008, WBC 459k, in ICU for 2 days + in hospital 1 week
• Leukapheresis for 1 week, to reduce WBC (wasn't given Hydroxyurea)
• Oct. 28, 2008: CML confirmed, start Gleevec 400mg
• Oct. 31, 2008: sent home when WBC reached 121k
• On/off, reduced dose Gleevec for 7 months
• April 2009: Started Sprycel 100mg
• Sept. 2009: PCRU 0.000
• Sept. 2011: after 2 years steady PCRU & taking Sprycel 100mg before bed, quit Sprycel (with permission)
• Currently: still steady PCRU, testing every 6 months 🤗
— Fatigue, hearing loss continue, alas, but I prefer to think it is all getting better!
Posted 24 January 2011 - 03:04 PM
Don't mistake envy for jealousy, no one begrudges you for how well you are doing. It is great that you are doing well and it is insipring to new comers who would be quite upset if all they saw were the problem cases and never got to read about the success stories. You never have to apologize for wanting to be healthier. Yes you are doing well, but as your test shows you still have cancer in you, there is no such thing as "a little cancer" so you have every right to want to achieve undecteable status and the addtional piece of mind that comes with it. In the mean time enjoy what you have acheived so far, it is highly likely that you could continue to live a full rewarding life at the level you are at today and that is something to be hopeful about. You are always welcome and encouraged to post anything here - good or bad.
I hope over time you get more accustomed to the treatment and the side effects fade way into the background.
All the best....
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