18 replies to this topic

[luvmybees24]

I am doing so well on the Tasigna that I forget I even have CML. Then I read about someone needing a transplant and I freak out. I sure hope the Tasigna keeps working and I don't ever have to go through that. So scared and just want my PCR results already!!! They were drawn Feb 20th and still not in. It just drives me nuts that I feel so fine (asides from the BMB site pain) but yet I have cancer. Blows my mind.

[tiouki]

Hello Laura I know what you feel! I am in the same situation, 6 months sprycel, results are perfect, no side effects, I really do forget that I have leukemia, which is the great thing about these new drugs! (for some of us who tolerate them well)

About the person who needs a transplant : I think there is no need to be scared here, the odds are more with us than against us with this leukemia

About waiting your results it's been 4 weeks I really want my PCR result too grrrr...

Good luck with that try to keep forgetting your disease and enjoy life !

Pierre

[CallMeLucky]

That is our paradox - our disease is a curse and a blessing at the same time.  For some the scale tips more in one direction and some times it seesaws.  There is no shame in feeling well in spite of the disease - if you feel well then you are truly blessed - make the most of it.

[KerriD]

I feel the same way.  I feel so lucky to have been DX before I got really sick and to have had great quick results.  My 10year old said the other day as I was taking my Tasigna, "Mom, I forgot you had cancer"

About waiting for PCR results.... I chase mine down everytime.  I usually wait 5 days after my blood draw and then start calling.  My brother is the VP of Sales at Clarient ( Cancer testing company) and I have all my testing sent to them.  And I know that the results are ready within 3 days there.  But they send it back to the hospital where I have the blood drawn, then it sits on a fax machine waiting to be scanned in for days before it is then forwarded to my doc, where the same thing happens there.  EVERY SINGLE TIME....

It is a mess and I feel really bad for people that feel really sick and have to be at the mercy of waiting for someone to get around to letting them know their results.

[pamsouth]

luvmybees24 wrote:
I am doing so well on the Tasigna that I forget I even have CML. Then I read about someone needing a transplant and I freak out. I sure hope the Tasigna keeps working and I don't ever have to go through that. So scared and just want my PCR results already!!! They were drawn Feb 20th and still not in.  It just drives me nuts that I feel so fine (asides from the BMB site pain) but yet I have cancer. Blows my mind. 

That sounda a bit odd that your blood was drawn on Feb 20th and your post is march 7th and you still do not have the results.  Usually a week and mine are in, tops would be 2 weeks. Maybe your doctor has not had time to review the results?

PamSouth

[LivingWellWithCML]

Agreed.  One year into treatment, I feel perfectly healthy and it's mind-boggling to think that I'm living with cancer.  My family gets sick more often than I do, and I still recover from an illness faster than everyone else in my family.  I can run a mile in less than 7 minutes (sometimes, hahaha), yet I am anemic and have low amounts of RBCs/hemoglobin to carry oxygen to my legs ... yet here I am running as fast and far as I did back in college.  How is this possible?!?

I totally understand the curse part too ........ I now live with a level of anxiety in my life that is challenging to deal with at times, yet I'm lucky enough to be alive and healthy.  It is quite the paradox.

I truly give thanks each day that I have my health because of TKIs and I hope/pray that it will continue for many years to come.  For the vast majority of us, we are so fortunate to have TKIs that are not only saving our lives, but allowing us to live our lives.  It's truly amazing.

All of that said, the TKI side effects stink, but it sure does beat the alternative.

[pamsouth]

I was just thinking maybe the side effects are more tolerable, the younger you are.  I am 64 years old, diagnosed in 2005 at 57 years and still on Gleevec.  I noticed the older I get, my health declines.  I think not only because of age but I think with age we probably don't tolerate the side effects as well.  Sometimes I wish I would have had the BMT when I was diagnosed in that i had 2 siblings match.  However after reading some of the journal of transplants, I am sure at my age and decline of health i would be a high risk to survival.  I know there are those on the board who regard transplant as only last resort.  But I keep thinking of the ones who have been cured.  But it appears, you can have all your ducks lined up, donor, youth, etc, and sometimes things go badly. Sometimes I think it is a toss of the coin.

Just my personal journey. pamsouth

[Lizzybee]

Wow, you are really lucky.  I am on Tasigna and I know every single day that I have cancer.  I thought this would be the year I would return to working full time because my kids are older and the oldest is starting college in the fall; instead, I am struggling to work the required part time hours to keep my insurance.  And of course, I cannot afford to lose my insurance now.  I have trouble falling asleep, waking up, concentrating, thinking hard, staying organized.  Most tasks feel harder than they should be.  I feel better than before my diagnosis, but definitely not back to normal. November 2011 was a great month in which I actually did feel normal for almost the entire month. I had such great hopes that month. Since November, I've not had even one day where I felt normal.  My onc was also expecting better results by now (in terms of how I feel), so he ran some bloodwork to rule out other causes, but it was all normal. Ugh, I sound bitter, and I don't mean to.  I'm just jealous of you. :-)

About the pcr, my onc always has me schedule a follow up appt 10 days after the blood draw, because he knows the results will back by then if not sooner. It seems odd that yours are taking so long.  I hope you get them soon, I know the waiting is the worst.

[tiouki]

It's been 4 weeks I still don't have them (I did my tests at the hospital in Paris I think they are quite busy 1 month is the minimum)

Pierre

[pamsouth]

Paris, Wow the city of romance!  What is Paris like? 

I believe Jackie Kennedy Onasis had a formal education, in the arts,  in Paris.

CML in Paris?

PamSouth

[Judy2]

Hi Lizzybee,

I was on Tasigna 600mg for 6 days and I had such a bad reaction that I switched to Sprycel 50mg. With the help of Prednisone and Allegra I am able to tolerate the side effects very well. Have you ever thought of tryng a different med.? After all, it's not just about  living, it's about living well.

Judy

[Lizzybee]

Hi Judy,

My onc has suggested changing meds, but I'm not ready to do that.  They all have side effects, and from the number of discussions here about fatigue, I know that all of the TKIs can have that side effect.  I want to see if I can get to MMR on Tasigna, so that if I do change meds, I'll know whether I can go back to Tasigna if the new one doesn't work out.  And I was in pretty bad shape when I was diagnosed, so I'm still hoping that when my cancer levels get lower, I will feel better.  If the fatigue doesn't improve eventually, I'm sure I will reach a point where I decide to try a different med, but I'm just not there yet.

Thanks,

Elizabeth

[Judy2]

Hi Elizabeth,

So you think the way you are feeling is from the CML not the meds? What PCR level do you think is low enough so that when we feel sick we can safely say it is not the CML but the meds or something else? Just curious because I still have an elevated PCR and am not sure at what level I will be able to say that I am out of the woods.

Judy

[Lizzybee]

Judy,  I really don't know.  Like I said, I felt better for awhile, then I crashed and didn't come back up.  When I felt good, my hgb was 12, but in January it was less than 12.  11 point something, which is not even a discernible difference for some people, but could be contributing to my fatigue.  It's tax season and I'm a CPA, so I'm pushing myself to work as many hours as possible; so I'm sure that stress is not helping.  My sleep schedule is messed up because I have insomnia.  My pcr was 0.6% in January, so it's better but not MMR.  In fact, I don't think it's quite a 2 log reduction, so not CCyR either.  I think if I get to MMR and my hgb returns to normal, and I still feel like this, then I'll know it's the Tasigna.  I think part of my fear about changing meds is that if it's not Tasigna, I won't feel any better AND I might have new and worse side effects in addition to being fatigued. 

What was your last pcr?  Mine went up from 1.8% to 2.4% in October, which was pretty scary, so it was a big relief when it was 0.6% in January.  I hear of people hitting MMR after 3 or 6 months on Tasigna, so I was hoping for better, but at least it's going in the right direction. 

Sorry to be a downer today, it's just been a rough day.  I'm usually better at taking CML and all that goes with it in stride.

Elizabeth

[tiouki]

Ha Paris is a great city, even though I spend quite some time in the crowded subway full of stressed people in a hurry
But I love Paris, it's full of history and a nice place for art/music/culture etc... Even though I am always saying to myself I should take the time to do all these things

Pierre

[Judy2]

Hi Elizabeth,

You are not a downer, you are telling it like it is. CML is a hard cancer to have because it is chronic, there is no end to it. We will be dealing with PCR tests and the stress that goes along with waiting for our results for the rest of our lives. I am so glad that your PCR results are back down, it must have been very scary to see them rise. Was it just a lab error? My last PCR was 27.1%, the lowest it has been since I was dx last May. The 27.1% was after being on Sprycel 50mg for just 5 weeks so I have high hopes for this med. The last few weeks my night sweats have not been as bad and I am not as tired so I'm thinking my next PCR test, which is next week, will be much improved. Elizabeth, hopefully after April 15th, or the 16th this year, you will feel less tired and less stressed. Thanks for responding to me.

Judy

[Lizzybee]

Hi Judy,  I don't think my pcr was a lab error, apparently it's normal for pcr to jump around a bit, but as you know, it's scary when you get one that went up instead of down.  I hope Sprycel works for you and your next pcr is much lower!  It must be frustrating that it's still so high.

[pamsouth]

Lizzy,  Mine jumped around a bit, a lot, last fall.  When I called the Lab they had changed over to the IS scale.  Strange my PCR jumped up from negative to 28 % then 48 %, something like that give me a brake I working from memory, here.  Then a week later down to 12%.  all over the place.  I think the lab was having some difficulty.  After all for most of 6 years I was undetectable.   Fish still good at 96% normal. CBC good.

PamSouth

[Lizzybee]

Hi Pam, Wow, that must have been scary!  My pcr goes to the Mayo Clinic and their reports have both the old system and IS.  So I get two percentages.  I like the IS better just because the results are simpler mathematically.  100% at dx, 10% is a 1 log reduction, 1% is a 2 log reduction, and .1% is a 3 log reduction.