7 replies to this topic

[nathaliece]

First, I want to thank all of you for your kind words and suggestions as I try to get my arms around my new reality.  I was diagnosed 11/10 and have been on one 400 mg pill daily since Thanksgiving.  I still struggle with significant fatigue and nausea while trying to work full time and be a good mom.  I had a particularly rough morning and called my oncologist office to request the prescription to be changed to four 100 mg pills  a day as many of you have suggested.  The nurse said, "Sure -- no big deal.  We do that all the time for folks."  I am hoping that it helps.  If it does -- you guys get all the credit!

Nat

[knoppl]

Hi Nat, I made the switch in January and it has made the world of difference.  I have less fatigue and  no nausea but still have some fluid retention. I also have to say that once I got past the first year, I also started feeling better. Trey has mentioned this several times but for me it really did make a difference. I hope spitting the dose makes a big difference with you too.

Leanne

[CallMeLucky]

I'm seeing my doctor on Monday and depending on how my tests look, I am going to ask if I can try this.  If I can alleviate some of the fatigue and muscle aches, I feel like I could tolerate this for a long time and be content.  (I'll tolerate whatever I have to and be content, but it would be nice to feel closer to normal for the long haul)

[nathaliece]

LeeAnne - I hope I respond similarly.  New meds are due here tomorrow so I am hoping for a good weekend.  Lucky, I'll keep you posted.  Interestingly, after 11 straight days of puking and lots of fatigue, I decided to just call the oncologist's office and ask rather than wait for my next appointment.  The triage nurse told me it was no big deal and that they prescribe it with the split dosage all the time.  Within 10 minutes the new script was faxed.  Now I am chastising myself for waiting so long.  Every time I go to the bone marrow clinic where my oncologist practices I see people who are so much sicker than I am.  I feel bad bothering the oncologist outside of my regular appointments because I don't want to distract him from treating his patients who are in a much more critical state.

Got my fingers crossed!

Nat

[lala]

Hi, Lucky,  You had your onc visit the other day....did you decide to do the four small pills a day instead of the 400?   It has really helped me.....the fatigue is better as is my stomach....much less burning during the middle of the night.    Trey, when is the best time to take them?  Is it ok to take them after breakfast and after lunch?  And is it important to take them at the same hour each day?  I am soon to be 55 and the memory is not what it used to be!  Marine, I finished another year of teaching!  The week after the kids left, we worked on our curriculum.  I found I had energy to get through the day.....sitting at a table working is very different than teaching a classroom full of kids!  . I think I might be able to work full time if I had a desk job.  No wonder some can work and some cannot.  We also had an insurance change, and had to pay the first three thousand out of pocket, and I cried.....don't let anyone tell us this is easy....  The weather in Chicago has been beautiful.......that sure helps!  Happy summer to you all! Lala

[Marnie]

Hi, lala. . .congrats on making it through another school year!  Mine was pretty  awful, so I'm hoping to get my mindset on a better track for next year.  I'm on the contract negotiations team for the teachers in my district, and it was an awful year at the table.  Pay cuts, 4 furlough days (which means an even bigger pay cut), paying for health insurance and dental, which we've never had to do before, a new insurance system, so I'll be paying $4000 out of pocket when I order my Sprycel in September. . .I'll be crying right along with you.  Then, get this. . .they start the year over in January, which means another $4000 deductible then!  Luckily, I can switch to my husband's insurance, so I won't get hit with the January $4000, but that means paying the premium.  Up until now, mine has always been covered by my employer.  In order to save $1000 (with my current carrier, the new deductible is $5000), I'll have to choose a different carrier, which means 4 months of a different doc, going thru pre-auth for meds, new pharmacy, etc.  But then I'll be able to go back when I go onto my husband's insurance.  Enough whining for now, but it's taken me the first month-and-a-half of vacation to get over my anger and frustration with my school district.

My husband and I are gearing up for a long weekend with old friends, kayaking, motorcycling, hiking, geocaching, eating, and (of course) drinking (a lot, I'm sure).  Definitely looking forward to getting away for awhile.  Our earlier vacation didn't turn out to be very relaxing, unfortunately.  Just got my bloodwork done today, and I'm very happy that the CBC is finally completely in the normal range.  Perhaps the anemia is finally behind me (though I sure have been exhausted lately).   Keeping my fingers crossed on my second post-Sprycel PCR results.

I've spent quite a lot of time this summer developing Smartboard lessons, and, as you say. . .it's certainly much easier to work on curriculum than it is to have a classroom full of kids.   Not an easy job when you have to deal with chronic fatigue.

Enjoy your summer, and do not spend all of your time working on school stuff!  Life's too short for that (I'll try to follow my own advice, too).

What grade do you teach?  Perhaps you've said, but I can't remember.

Marnie

Message was edited by: Marnie

[lala]

Hi...many ideas to comment on but the main one that comes to mind is HOW HARD IT IS TO DO ANYTHING EXTRA WHILE HAVIN CML.....do you know what I mean?  I can get through my days....at my new normal speed.....but do not throw in insurance problems.....I fall apart.  Last week I had to look into renewing my licence and to see if I had all the continuing education hours and I almost had a fit!    Have a great trip!   Btw, I teach 4th and 5th grade Spanish......ssssoooooo fun.....active lessons every day!  My wonderful district has accommodated my health issues for seven years....how lucky am I?    I hope to keep going until I drop.....i love teaching!  .   BYE!  Lala

[CallMeLucky]

Hi Lala,

Regarding switching to 200mg x2 per day.  A couple of months ago I went to a National CML society event where Dr. Mauro was speaking.  Dr. Mauro is from OSHU and works with Dr. Drucker.  During the Q&A I asked what he thought about splitting Gleevec dosage.  I'll paraphrase his response "Novartis recommends 400mg once daily as the optimal dosing.  This is the dosage that was used in trial and considered the effective dosage.  There haven't been studies testing the efficacy of 200 mg x2 per day, therefore I would not be in favor of this dosing schedule."

Fast forward a couple of months, I go to see my Dr at Memorial Sloan and ask the same question and essentially got the exact same response from my Dr.  She was not in favor of it.  She didn't say it was a bad idea, she said there was no data to base it on and therefore she was not in favor of it.

I imagine if I pushed the issue she would likely let me do it, and I certainly can take it into my own hands and split the dosage by breaking pills in half.  However I prefer to not do that.  I have mixed feelings about it.  I know my Dr is very conservative and I know there are people who are splitting their dose and doing well.  On the other hand, I am doing well and I don't want to rock the boat.  My side effects are manageable.  I do have fatigue but it is not debilitating.  I would like to lessen it if I could but at this point I'm not looking to challenge the doctor's instructions.  Over time I will see how I feel.  I am very fortunate to have achieved CMR.  I would like to see if I can maintain this, so changing anything I have been doing is not what I want to do right now.  Perhaps a little more down the road if I feel the CMR is holding, then maybe I will consider bringing up the topic again.

Let me say that I don't think this information should make anyone who is taking split dosage be overly concerned.  If you are taking split dosage and doing well, then you are doing well and that is great.  I suspect it doesn't make a difference.  Unfortunately with this stuff, there is no 100% correct answer and to make it worse, what works for one may have different results for someone else.  So for now I'm going to stick with what I have been doing and see how it goes.