223 replies to this topic

[Pin]

Lala - Haha - maybe! I think the books have become very popular now that the tv series has started. They are really great books! Pin

[Sassylpn]

Thanks, yeah the headaches are beginning to get better, and I actually feel better today than I have felt in a long time. I was so tired and achy. Like you said, felt like crap lol. I am trying to do a play at this time on top of working part time so who knows lol.

My first set of blood works were low for my RBC's after a few days on it, but will see. He wants to watch me close and do weekly tests, for awhile anyway.

Yeah the Tasigna just didn't work for me, Pancreatitis was no fun.

It is funny you put the Italian reference in as I am Italian from my Dad's side. Sicilian actually. I am hoping the Sprycel works as well as other's say it has for them, but if I have to go back to G I will, but hoping I can avoid it, better than the alternative, so gotta keep a positive attitude that this will work and so far so good. I was really sick a week into the Tasigna. Anyway take care and will keep in touch

Linda

[Happycat]

Welcome, Nam!  You must have been a good student, because you're English is really quite nice.

Okay, now that I keep hearing so much about this Game of Thrones thing, I'll have to check it out.  It's a book series, huh?

Wow, how ironic about the Korean dramas and leukemia!  Did you have a similar reaction at first?  I know I was pretty shocked to get the call, and even more shocked when the hematologist sat down and gave me the "this is really serious" talk.  (Mind you, in my case, they thought I had an acute form of leukemia called APML at first.)  It was such a surreal day.

I hope you'll be feeling nice and energetic so you can go to Canberra for that Master's degree.

Thanks for sharing,

Traci 

[Pin]

Hey Traci,

I just found out today that my 38% was a PCR test, not a marrow test - I'm pretty sure that isn't good

[jandrews128]

1. Josh Andrews

2. Edmond, Oklahoma

3. Bartender, Server

4. 25

5. Single

6. Music of all kinds, outdoors: camping, hiking, the lake, etc; shooting pool, road trips and traveling

7. Diagnosed about a month ago I broke my ankle and they discovered high platelet and wbc counts during routine presurgery bloodwork, I am on my 3rd week of Tasigna treatment and am currently dealing with low wbc, rbc, and platelet counts...I'm happy to see low numbers though because for the 3 weeks prior to last week I spent the weekends in the hospital receiving platelet apheresis due to rapidly increasing counts.  The only real side effects I have experienced as of yet are minor bone and joint pain, low energy levels, and an inability to gain weight (been trying hard!)  Wondering how long it takes most people on Tasigna to achieve stable and normal blood counts, as I can not have surgery to fix my ankle until my counts have stabilized.

8. When my 6 and 7 year old cousins first found out about my CML they immediately went to their kitchen and began baking brownies and then proceeded to walk around their neighborhood and sell them to raise money to help with my medical bills.  I'm pretty sure they only raised about $20 but knowing they cared that much made me smile through a rough day.

[JoshLee]

Hi Josh,

     My name is Josh as well! We are kind of in the same boat. I am 27 and was dx on 12/23/10. I just had my 6 month bmb, fish, and pcr yesterday. Now the waiting begins. I too was started on Tasigna and continue on it today. It has been a good drug for me side effect wise. I pretty much just have random muscle pains and bouts of fatigue. In the beginning my counts dropped as low as 1.0 for ANC, 2.6 for WBC, and 60 for platelets. Now my counts are all normal except for the ol platelets. They have been sitting around 125-128 for a few months. I think my spleen is hoarding them. Everyone's journey with this disease is strangely different so I wish you the best and if you ever have any questions you can send me a pm and we can exchange info. Hope you're feeling alright. -Josh

[Taylor]

Hi Josh,

Nice/sad to see an Okie around my age here (I'm in Tulsa, went to OU, I'll be 25 in August).  I was dx January 31st and began Tasigna a week later.  I've experienced the bone pain and low energy levels, but my energy levels are fine now, as are my blood counts.  It's a bit hard for me to gain weight either, but I think it's because snacking for me is really reduced since we are instructed to fast a few hours around the medicine.  Good luck with everything, hope you can get that ankle fixed soon.

[PhilB]

Hi Pin,

Assuming your lab is on the International Scale a 38% PCR level at dx is probably in the average to low range and nothing to be unduly worried about.  PCR at dx is usually quite a bit lower than 100% as the original 'reference' patients used to define the 100% 'average' starting PCR on IS  included some very sick bunnies.

[lala]

Hi...welcome to our CML Club!  It's full of nice people!  I love the brownie sale......aren't kids the greatest?    Try to stay cool this week....I'm near Chicago, and we're sharing your heat wave......yikes...it is hot!  My youngest is a ku jay hawk......      .       Lala

[Pin]

Hey thanks Phil - I guess I was just comparing to what I saw on this site. I can't seem to find any info about mean or average PCR bcr-abl levels at diagnosis though. Are you saying that on the IS mean PCR at diagnosis is 100%?

Also, does this translate as a ratio, so 100% would mean that you have equal bcr-abl to bcr?

Gah - just when I thought I was across it!

[PhilB]

Hi Pin,

The whole thing is indeed rather confusing.  A 'raw' PCR result would indeed be the ratio of BCR-ABL  to the control gene used  - so if there were 3 BCR-ABL to every 2 control the number would be 150%, equal numbers would be 100%, 1 BCR ABL to every 3 controls 33% and so on.  That's where PCR testing started out, but the problem was that if you tested the same sample in different labs using different machines, reagents, procedures, etc you could get widely differing results, so one lab might tell you you were 11% whilst another said you were 93%.

To try to give some consistency the International Scale was created.  The good news is that this makes life much easier in terms of comparing numbers.  The bad news is that it makes life much harder if you want to understand exactly what the number means and how it was arrived at.  Basically what they did was take samples from a dozen or so patients before they had started treatment and test them at several different labs.  Each lab then worked out the average PCR of the patient group.  They then worked out the number they had to multiply that average by to get to 100% and that became their 'conversion factor eg

Lab	Average Raw PCR	Conversion Factor
A	50%	2
B	80%	1.25
C	100%	1
D	125%	0.8

Having worked out its conversion factor every lab then multiplies all future test results by the conversion factor to give a level playing field so, ignoring random variations, if you test the same sample at labs A and B lab A might have a raw figure of 20% which they would multiply by 2 and report as 40% whilst lab B would have a raw figure of 32% which they would multiply by 1.25 and again report as 40%.

100% IS is therefore just the average of a particular small group of patients a long time ago, but if we all measure from the same point it doesn't matter too much what that original point is.

So what does all this mean in real life?  Well the PCR numbers are basically used for 2 things - to track the trend in your numbers and to see whether you have reached MMR which is the level with greatest prognostic significance.  For trends it doesn't matter what scale you use as only the direction and speed of travel matters.  For MMR things get even more confusing I'm afraid.

MMR is defined as a 3 log (1000 fold) reduction, but from what?  There are three different starting points that have been used - your personal levels at dx, the average level at dx for all the patients in a particular lab, or the average of the famous reference patients ie 100% IS.  Personal level is a very dodgy number to use as it would imply that someone diagnosed early needed to get a deeper response than someone diagnosed late so I wouldn't tend to bother with that one.  It's probably safe to say that just about all scientific studies now use 100% IS as the starting point in their definition of MMR so all the numbers they calculate saying that if you reach MMR you have only a very small chance of ever losing response are based on that scale.

Bottom line is if you want to know what's happening follow your trend, and if you want to know if you have reached MMR and it doesn't give a log reduction on your test then ask you onc if the lab is on the Internaional Scale (in which case MMR is 0.1%) and if they are not then ask them what level they consider to be MMR.  Hopefully soon everyone will be on IS and we can then all just ignore all of the above and only look at the numbers!

Phil

[Pin]

Wow! Thanks for explaining all that - I think I get it now. I have seen other patients in Australia have international scale %s so I assume this is what mine is too.

But it sounds like irrespective of my starting point, the aim is to get to under 0.1%...Long ways to go yet!

Thanks Phil!

[Marnie]

I finally GET IT!!  Thanks Phil.  I've copied and pasted it and will bring it in to my onc, so that maybe HE'LL understand it, too (though he doesn't seem to be particularly interested in log reductions. . .every time I ask him a question about it, he hems and haws and doesn't give me much of an answer).

Marnie

[Happycat]

Okay, you guys have me interested!  I bought The Game of Thrones book.

Traci

[Happycat]

Phil, great explanation!  I'm printing this for my first PCR in October.  Thanks for taking the time to explain that.

Traci

[Pin]

Yay! I do hope you enjoy it Traci! Let us know how you go

[Happycat]

Hi, Josh, nice to have you here in the club no one wants to join!

So do you have any really good recipes for chocolate martinis?   My dh and I went to a chocolate bar in Buffalo last year for our anniversary.  They had the BEST chocolate martinis, but they used their own "proprietary" chocolate fondue.  I've been trying to recreate it at home.  (We live 16 h away from Buffalo, so I can't just go scarf them down when I feel like it!)  Anyway, feel free to share any drink recipes here.  I know plenty of us would be interested!

Geez, you youngsters with the high metabolism complaining about NOT being able to gain weight!  Heck, I just have to breathe in some ice creams fumes to gain a pound.  Sucks getting old.  I swear my metabolism dropped by 50% the day I turned 40.

No clue how long it takes to get to normal levels on the Tasigna.  I'd post that on the forum as a separate question if you want to get more traffic on it.  I hope the ankle isn't too painful.  Have they been able to schedule the surgery yet?  Do they have to worry about platelet function and bleed-outs?  Is that the concern?

What sweet cousins you have.  Did they give you some brownies, too??

Traci

[momruns]

1) Name (whatever you go by here)   Loreta (Lo)

2) Location  Erie, Pa. (franklin township)

3) Occupation - Working? Doing what? Retired?, etc.  RN I am a first assist in the operating room which means I assist the surgeon and close.

4) Age - optional - my mother would still say she's 29!  52

5) Marital/Family situation - married, divorced, widowed, etc. Kids and their ages, etc.  Married to a wonderful man Jim for 34 years, daughter 27 who is a PharmD and son 25 who just graduated from college.  We live on 20 acres with our 3 dogs ( a yellow lab, a cholate lab, and their friend Otis our bassett hound haha)

6) Favorite hobbies? Was a runner for 25 faithful years and just getting back into it.

7) CML diagnosed when? How is it going? - again, share what you are comfortable sharing  In perfect health (I thought) so I went for routine blood work and got a call my WBC count was 70 and here I am.  Started G 400/qd on 2/14/11 (Diag 2/4/11)  Many side effects so reduced to 300/qd and things are a little better.  Still anemic (hct 28-30) but I think running again will do me good.

8) Any funny CML stories or great CML tips you'd like to share?  I have no funny stories but enjoy reading everyone elses.  This site is a God send, I feel empowered.  Thanks,

Loreta (Lo)

[cleocans]

1) Name-Kim

2) Location-Lawton, Ok

3) Occupation-housewife

4) Age-38

5) Marital/Family Situation-Married for 12 years to my Army man!  We have two girls, a 10 (almost 11) and a 9 year old.

6) Favorite hobbies-running, hiking, cooking, and reading.

7) CML diagnosed when? How is it going?- I was diagnosed on July 7, 2011.  Started on Sprycel on July 13th.  Things are going good.  I do have some water retention and have to watch my sodium intake.  If I don't I can really balloon up.

8) Any funny CML stories or great CML tips.- I don't have any as I was just diagnosed.