17 replies to this topic

[pammartin]

I have read the post from Trey about these two meds, but after speaking with the dr office today I am confused.  Apparently the 100 mg of Sprycel is not going to work for me, my white count is rising several points every week.  Dr. office said we could try Tasigna, my questions are, what is the usual dose for Tasigna, especially since I seem to only respond to the 140 of Sprycel, do these medications work in a similar fashion, and should I request a mutation test.  I am returning for labs on Thursday to see where the counts are, and the next step is a PCR test, just a few short weeks ago I was .004% it will be easy to see if  my response is changing.  What should I be asking, is it time to see that CML specialist?

Thanks

Pam

[scuba]

Hi Pam - If your PCR a few weeks ago was 0.004%, then having rising white cell counts is not necessarily CML. You may just have a normal spike in WBC's due to an unfelt infection or other inflammatory response.

What are your WBC's currently? Neutrophils, platelets?

I would presume that your PCR would have to jump up a log or two to be worrisome. What does FISH show?

(update: I just read your other post where your WBC's are at 11 or so, but your platelets have dropped some. Right now I would not get too alarmed. You need to see what the FISH/PCR reports before making any changes. You have time.)

Message was edited by: Michael

[pammartin]

Thanks Scuba,

I admit to some calming since posting, changes just seem to scare the heck out of me.  Especially since the dr is the one who is doing the scaring.  If white count is still going on after Thursday retest I am off for new PCR test.  In January PCR was .004% and Fish was negative.  Everyone was a bit hesitant when I requested the reduction of Sprycel from the 140 mg to the 100 mg.  The 140 mg just kicks my arse, and quality of life becomes less, it also causes serious side effects, I have none of these on the 100 mg.  Patience, watch and wait, boy I dislike those words, but right now it is what I have to do.  Thanks again!

[Taylor]

Changes scare the heck out of me too   I'm sure everything is fine.  You can take two blood samples right after each other, same day same hour, and they could be very different.  Maybe you just have a bug that you don't know about because your immune system is ramping up and doing its job!

To respond to your Tasigna dosage question, the standard is 600mg a day--300 in the morning (2 x 150mg pills), 300 in the evening (2 x 150mg pills).  This is what I'm on.  The second "standard" is 800mg a day, 400 in morning and 400 in evening.  I've never heard of higher but I've seen people with a lot lower dosages for whatever reason, such as immunosuppresion.

[scuba]

Glad to hear that all is calm now ... When you think about it, Pam, your FISH is zero and PCR a few short weeks ago was 0.004% - clearly in Major Molecular Remission territory. Sprycel is one powerful drug. Many patients are on a much lower dose than you and they are having terrific response ... (when it works that is - and it does seem to be working for you). I read that Sprycel either works or it doesn't.

I am one log behind you at 0.06% and I only take 20mg. Now Curcumin may be playing a role or not - we don't really know - but suffice it to say that low dose Sprycel can put people into MMR. Dr. Cortes has dozens of patients in this category.

CML is a slow disease when in Chronic phase. It takes years to get going. And when someone is at 0.004% - chances are you could go completely off Sprycel and it would be months before it crept up again ... and in some cases - it may not even budge.  I was off Sprycel for THREE months and my PCR hardly budged at all.

By the way - normal WBC is anywhere between 4.5 - 10,000 - a big range. And when an infection sets in - WBC's can easily double for a short time.  There is a good likelihood your normal blood system is really taking off now and the CML has been smothered to nothing.

Like you said - your next PCR will be revealing. Cheers that you are PCR u !!!

[Judy2]

Hi Pam M.,

I'm glad you got such a positive response from Scuba, he makes a lot of sense. I'm glad things don't seem as scary as they did a few hours ago. I will be waiting for your next results on Thursday.

xoxo,

Judy

[Pin]

Hi Pam, wow - I'm surprised that your doctor is so jumpy about these small rises in white counts when your last PCR was so low. They really should be telling you to celebrate your awesome PCR result at three months, I could only have dreamed of such a low score - I hope that they can sort this out for you quick smart so you can feel ok about it again. Cheers, Pin xxx.

[pammartin]

Hey,

They finally got around to telling me to celebrate today!  It was just a few weeks later than you thought they should.  I believe the jumps are because of my initial response, 100 mg just didn't work for me then.  But thank goodness it sure seems to be working now.  All I can ask for is to continue to be very boring material for the oncologist and the hematologist.  One situation where it is perfect to be boringly normal.  hehe

Kick the crap out of the higher level drama, I am going to 'try' to not call for results for several weeks.  If they are not on, they always call me, so will work off the 'no news is good news idea.'

Thanks for posting and positive ideas everyone!

Pam

[Pin]

Yay! Pam, so glad to hear this

[Judy2]

Hi Pam,

Here is to many many years of being boring.

Judy

[tiouki]

Hello pammartin,

With 0.004% PCR and negative FISH few weeks ago, it is very very unlickely that sprycel is not working because your whites are increasing a little bit. If you and/or your doctor want to be sure => PCR test is the best way to see how it goes. Many things can make your whites increase other than CML.

I also think that with the response grade you already achieved (CCyR and MMR) get down to 100mg will work also. Easily (Cf. people who are responding with 70, 40 and even 20mg sprycel).

Good luck!

Pierre

[pamsouth]

pammartin wrote:
Hey,
They finally got around to telling me to celebrate today!  It was just a few weeks later than you thought they should.  I believe the jumps are because of my initial response, 100 mg just didn't work for me then.  But thank goodness it sure seems to be working now.  All I can ask for is to continue to be very boring material for the oncologist and the hematologist.  One situation where it is perfect to be boringly normal.  hehe
Kick the crap out of the higher level drama, I am going to 'try' to not call for results for several weeks.  If they are not on, they always call me, so will work off the 'no news is good news idea.'
Thanks for posting and positive ideas everyone!
Pam

Congrads PamM.  Glad that Sprycel is working.  I love hearing the success stories, always makes me feel good.  May you live to be a healthy grandma of 100 years, and hopefully a cure, for sure, will come along!

PamSouth

[pammartin]

Pamsouth,

you just scared me more than just about any test result, you said grandma and my son won't be 17 till April. 

hehe

Have a great day.

Pam

[pamsouth]

PamS,

Well let me see if I can clean it up a bit, Ha! 

I said "healthy Grandma of 100 years" 

Lets see, your son will soon be 17 years. 

Hopefully with the TKI's or cure, you will live to be, 100 year old grandma.  

Your 17 year old son (now) give's him plenty of time to grow up, go to college, marry the love of his life, and give you grand children, thus 100 year old happy, healthy, grandma.

I'm sure he is a wonderful son, but I can see why that might cause one to panic, a bit!

Is that better, or am I digging a deeper hole?

PamSouth.

[pammartin]

A wonderful son eh, outside of the setting his alarm for 12:30 a.m. to play video games then sleeps through his classes at school, looking me straight in the eye and telling me he 'didn't' eat the entire bag of peanut butter cups although he has peanut butter stuck to his teeth, and stating it wasn't he who has the refrigerator door sticky with apple butter while he has the jar in his hand........hhhhhmmmmmm

[pamsouth]

I am 64 years old.  For me it is easier having grandkids to spoil and send home, then to raise them.

Times are much different today.  When I was growing up we played outside alot in the summer, and shared in the daily household chores.  If you disobeyed you didn't get to stay up until 10pm and had added chores.  We didn't have electronics'.  Only 1 TV set. We did have a record player, that was cool  In the Winter the games were like monopoly and of course always reading books.  Had to change school clothes when you got home, snack, do homework, and chores.  Girls had to where dresses and skirts to school, below the knee, oxford shoes, no tennis shoes to school.  Never heard of guns or knives or drugs at school.  Although there was some booze and cigarettes, going on with some of the kids.

We live in a different world today, I don't know if i were a kid (today) all over again, if i could go the fast pace lane.  I like things simple.

PamSouth

[pammartin]

What a great story Billie.  I have one similar but it was my hair.  The best story I have for Nick is he wanted his hair dyed blond several years ago, he was going as Bo Duke for Halloween.  It turned out ok, but I refused to allow him to bleach his hair, instead we just used color, so it was a very dirty unfashionable blond color.  He loved it and in four haircuts it was gone forever.  Photos will tell the hair dye story.  My story is much better, or worse depending on how one looks at it.  It was Christmas eve, I was in my early 20's and convinced blond highlights and a bit blonder hair was my perfect color. (Today when I look at the photos I cringe)  anyway, I went to the drug store, grabbed a box with a blond on the front, headed home and applied the highlights.  Little known to me, if I would take time to actually read boxes instead of just skimming them, the outcome would not have happened.  I had grabbed a hair stripper instead of highlights.  So, I left the stripper on for only about 20 minutes, plenty of time with highlights, not so much with hair stripper.  And of course 30 years ago the products were much harsher than they are today.  I washed it out, had a towel on my hair and headed upstairs to get dressed.  Make up next, then headed back down the steps, my mom asked me a question so while I was talking to her I started to dry my hair, it was pretty long, in the middle of her sentence she stopped talking and stared.  My mother was not prone to a loss for words, so I knew something was wrong.  She started questioning me about what I did to my hair and what I was looking for.  By now I was in a panic.  I ran to the bathroom and looked in the mirror.  Every streak I had the stripper on was a shade of green.  And it wasn't an attractive green either.  It was Christmas eve, nothing was open and I was headed to a party in a few hours.  I made the best of it, I took two extra large red ornaments off the tree and used them for earrings (nothing was keeping me from a party) added a Santa hat and everyone thought the green highlights were a cute 'temporary' accessory.  The day after Christmas I called mom's hairdresser, she opened her shop to get me in, and spent about 4 hours 'fixing' my hair.  I had to have several inches cut off, it was then layered and colored because it was in such sad state after my home hair product adventure.  Did I learn my lesson, I doubt it, but I did learn not to skim when reading hair care products.  About 10 years ago I bought a conditioner with henna in it, thought it would look great, I ended up with Lucille Ball colored hair, and yes it was just a few hours before a dinner party I was attending.......but that is another post.