31 replies to this topic

[Marnie]

No surprise. . .after almost 2 months off of Sprycel for plueral effusion, my PCR was up to .18.  Back on 50 mg hoping to maintain a reasonable balance between leukemic load and pleural effusion.

[sunshineC]

Hi Marnie.

Sorry to hear about your numbers going up.  My first onc was insistent that I not make any changes to the Sprycel.  I was having such a hard time with side effects I asked him if I could take it every other day, decrease the dose, anything.  He would not budge.  You know I changed docs for other reasons, but I can't see him till Oct. 20th.  I haven't had a blood test since July but never did hear the results.  I'm thinking the last PCR I had was in June, but I'm really not sure.  I'm thinking about calling the new onc office and see if they might want to order these tests before my appt so we can go over the results then.  Just a thought.  Course hubby keeps prodding me to have my GP order some blood tests, but he has learned he can't make me do anything I don't want to do.  Poor Guy.  But he does have a great learning curve!!  LOL!

How long were you on Sprycel before you got the PE?  Were you having any problems with side effects before then?  Or in the beginning, and then they went away?  I'm trying so hard to figure out what 'normal' (if you can call it that) response is with this stuff.  I still have days when my headaches and nausea are so bad I can't go into work.  And they just happen out of the blue.  I can't find any correlation to anything.  It drives me crazy.  I have days that I am just soooo tired, and days I have more trouble breathing than others.  And I know Trey said I wouldn't go bald, but I can't see the hair loss letting up at all either.  It's not that I WANT to try another drug.  My blood count, PCR, MMR, everything reacted very well with Sprycel, and very quickly, and I also realize other meds have their own side effects so I wouldn't really look forward to starting all over and getting used to a whole new set of side effects either.  I was going to wait and ask the new onc if this is what 'life' will be from now on.  I've heard other people talk about the 'CML life' (I think they called it).  Just wondering if I'm still fairly new on this stuff that it might get even better, or am I probably at optimal side effects.  I know everything is so hard to call cause everyone reacts to things differently also.  It's just hard not knowing what to look forward to, and what I can't.

Any experiences you can share would be greatly appreciated.

Thanks.

[Marnie]

HI, Sunshine. . .

 

When I started on 100 mg Sprycel, I didn't have any side effects at all.  Just the headache at the beginning.  I had heard about that, so convinced my doc to let me start on 50 mg for a week before jumping into full dose.  That worked pretty well, as I only had a mild headache for a week or so.

 

Maybe about a year into Sprycel, I started having a rash, which eventually turned into a pretty bad rash.  That said, it was only an annoyance, not a serious side effect.  The rash started on my neckline, then moved to my scalp, and then to my left ear.  The rash got to be pretty awful, but I could live with it. 

 

I think it was at the 3 1/2 year point on Sprycel when I got my first pleural effusion.  7 months later I got the second one (I'm not sure the first one ever resolved completely).  First time they drained 1.6 liters of fluid, this last time only 1.1.  I lowered dosage to 50 mg after the first p.e. (or was it the second. . .hmmm..I'll have to check my records to be sure).  With the lower dosage, my rash pretty much disappeared, although every once in awhile, my ear gets itchy.

 

My onc thinks that 50 mg is the right dosage for me. . .enough to keep the cml near the undetectable level, and also low enough to avoid pleural effusion (hopefully).  If I had still been undetectable, we would have dropped to 40 mg.  Oh well.  I have a feeling that I'm one of those people who will always be fluctuating in and out of PCRu. 

 

Marnie

[pammartin]

Marnie,

 

I was hoping for a different post concerning your results.  I hate this disease.

 

Pam

[Trey]

PE = PU

[Marnie]

Actually, PE isn't that big a deal.  .18=PU. 

 

I've decided (without talking to doc) that I think I'll do 100 mg for a week to kick some butt, and then drop back down to 50 mg.

 

I hate being a turtle.  How fricking annoying.

[pammartin]

Marnie,
Being Ms. Paranoia that I am lately, be careful hitting yourself with the 100mg coming off the PE. I know you want to kick the CML in the arse but just worried you will kick up the PE again. Keep thinking about you mentioning you didn't think the PE had totally cleared from before. You must be going to battle that regularly also. Don't forget, that turtle won the race.
Pam

[Marnie]

Sunshine. . .meant to mention this but forgot. . .I always get my blood work done a week or two before my appt with my oncologist.  It just makes sense to be able to go over the results when I meet with him.  I'm paying him the big bucks, he might as well earn his keep.

 

Also, I wouldn't waste the time or money to have your GP do blood tests.  Your onc will order the ones you need:  CBC, PCR, CMP.

 

Marnie

[Marnie]

Hey, Pam. . .hadn't occurred to me that the turtle did actually win the race.  That's a good thought!

[Trey]

PE + .18 = PU squared (x Pi)

 

Did I ever mention that I do not like non-zero polynomials which have no rational coefficients?  Well, I have now.

Edited by Trey, 23 September 2014 - 07:53 PM.

[Cathy]

Marie,

 

I've been watching to see what your numbers would be. I think that's pretty great they are only .18 ! Not bad at all!

 

Good luck!

 

Cathy

[sunshineC]

Thanks Marnie.  I'm actually glad I haven't called the office yet, now I can ask them about those specific tests (sounding like I actually know what I'm doing  Ha! Ha!).

And you know I'm new and know next to nothing, just please be careful with decisions you make.  I look forward to talking with you every time I'm on here, or hearing from you at least.  I wouldn't want to have my first 'bud' on here go backwards.

Thanks again for everything.

[Marnie]

Sunshine. . you will really impress the lab techs if you know that the PCR should be done with a lavendar test tube.  FISH is green.  I dont' know any others, but I always make sure that they are doing CBC (complete blood count), PCR (polymerese chain reaction), and CMP (complete metabolic panel). . .in the CMP, watch the liver function.

[Marnie]

PE + .18 = PU squared (x Pi)

 

Did I ever mention that I do not like non-zero polynomials which have no rational coefficients?  Well, I have now.

In 6th grade math, we are having trouble enough subtracting integers!  Polynomials are pretty scary!  The students were quite relieved to discover that multiplying and dividing integers was easier than subtracting.  Looks like a few days after school with some extra tutoring are in my immediate future.

[pammartin]

I was lost after poly-something-or-other, 35+ odd years ago there was a general math class choice....I was first in line

[sunshineC]

How often should FISH be done?

[Trey]

FISH is best used from diagnosis until CCyR (zero FISH) and should be done at diagnosis, again at 3 months, then every 3 - 6 months until CCyR.  After that only PCR is useful.

[sunshineC]

Thanks for the info Trey!

[Darlene_Jack]

This was all very helpful. I'm new to Cml. All of these posts help. I was on Sprycel foe a year. I developed pulmonary hypertension. I am now awaiting cardio clearance and waiting to find out which drug I will start next. Not looking forward to he possible new side effects. Hopping they might be less severe than sprycel was. I had a lot of days where I was in too much pain to work or eat. N days where I was able to push then he pain n days where it was more nausea than pain. Also a few days where cml was roller able n I was "ok". I'm thankful to finally find a site and people that understand what the daily battle with cml is. Mentally I felt very alone but I feel like I have finally found the strength I need in this place. Thank you all n best wishes to you all

[sunshineC]

Darlene_Jack:

I know just what you mean.  I was just diagnosed and put on Sprycel in March and I have just recently started to feel decent most days.  I was out of work until the middle of July.  Luckily I'm blessed to work with very understanding people and I came to work on a gradual basis when I could.  It's just now starting to get pretty regular.  I had severe headaches, nausea, pain, sooooo tired... all that.  I never knew what it was going to be until I woke up that morning - there was no rhyme or reason to any of it that I could find.  I was so glad when I found this place and these people also.  And not that I want anyone to be sick, but you made me feel better by seeing that I wasn't the only one that had such a hard time on Sprycel.  Guess it's true - misery loves company!!  LOL!!  Anyway, thank you for sharing that, it meant a lot to me. 

Please keep in touch and let us know how you are doing. 

 

Marnie, Trey, or anyone who cares:

Today is my last full day with long hair.  I can't take it anymore.  My hair just keeps falling out in little handfuls about every time I touch it.  It's gotten so thin I have to gather it together or put it up in order to cover all the thinning spots in the back.  Trey, I know you said I wouldn't go bald, and I'm counting on you, but I have to do something now.  So... tomorrow I have an appointment to get it all cut off.  Short I mean, not ALL off - as I said, I can deal with curly hair (just wish that it was coming in faster), I can't deal with looking like Curly!!  Anyway, I'm trying really hard to be happy and excited about something new and different, but I have to admit it's a little hard.  I don't like talking about it here cause I feel like everyone else has so many actual 'health' issues, but I just now finally decided that if it can bring me to tears, I have every right to share my feelings here and just hope others understand.  It took me a really long time to grow my hair long, it's always grown very slowly, and it was longer than it had ever been, and really pretty too.  But like I said, it's nothing like that now.  So... time for a change.  Wish me luck.  Hopefully it won't get worse with short hair, cause I won't have too many options left after that.  Again, I apologize to others who are struggling with so many other important issues, and thank you for letting me share my important issue for now.