9 replies to this topic

[lulusflyin]

Hi-

 

I have been on Sprycel since I was diagnosed in May 2016 - started with 100 mg and dropped to 80 mg 3 months ago.  I am in MMR but not deep - hover around 0.02/0.05 for the last 6 months.

 

My side effects are fatigue, less focus (likely due to fatigue), and varying muscle aches/pains (depends on the day).  These are manageable but not ideal given I will be on it for at least another 2+ years and I work full time with 2 kids (7, 11). I try to exercise at least 2x a week and with my busy life that is as good as it is going to get minus a couple of extra short walks during the week if I am able.  I try and work from home once a week to help manage the fatigue which keeps me sane since with kids my weekends are as busy as the workweek. And I try to take regular baths, stretch, massage, etc.

 

My doc has mentioned that if I am uncomfortable she would support me switching to bosutinib/bosulif. I am hesitant - I feel like it might be a devil you know kind of situation. Given that my side effects aren't terrible and I expect every TKI has them...I'm not sure it is worth switching particularly if I will have to spend a few weeks adjusting to a new medication (ie, not be able to function/work/take care of my kids).  I'm also not seeing much on the forum about bosulif side effects that make me feel great about switching (ie, still fatigue, really bad GI side effects, etc). 

 

Anyone have any thoughts to share who might be in a similar situation?

 

Thank you!

[scuba]

I had muscle aches while on Sprycel as well. Dr. Cortes suggested I take magnesium supplements. It worked terrifically. I take magnesium taurate due to its higher absorption. You might try supplementing with Magnesium Sprycel metabolism does cause magnesium depletion and may help explain some of the muscle aches we feel.

 

Given that you are in MMR, you may also find that reducing dose will go a long way to relieving your other side effects symptoms. I am PCRU while taking 20mg Sprycel. Even when I was above 1% PCR I only took 20mg Sprycel and it still dropped my PCR measurement. My suggestion to you would be to drop dose from 80 mg to 60 and see how your PCR responds. If it drops or even stays the same, I would drop further to 40 mg. You may find that your PCR continues to fall or stay the same while on a much lower dose of Sprycel. There is no risk of progression while you try this approach. If your PCR goes up, you can either switch to Bosulif or increase your dose back to where it was before.

 

It all depends on how comfortable you are with experimenting around dose to optimize your treatment unique to you.

[M.A.]

I noticed a significant increase in energy when I reduced from 75mg to 50mg of Sprycel a day. 

 

Like you, I seem to be hovering PCR-wise and I'm just hoping my BCR ABL levels reduce again on 50mg per day as I don't want to go higher again with my dose.

 

You are doing an amazing job keeping it all together. My kids are just a couple of years older than yours.

 

Hang in there!

[Buzzm1]

Lulusflyin, don't be afraid to first reduce your Sprycel dosage to 50mg to help reduce bothersome side-effects as many others have done.  It is unlikely that doing so will have a negative effect on your BCR-ABL level.

 

Please consider adding your history into your signature so that others can follow your progress.

[Tucker1]

I am on the reverse side I am on Bosulif for a little over two years and will probably switch to Sprycel when I can't handle my side effects anymore. Started Bouslif at 500mg I was sicker than I have ever been had stop wait till my liver returned to normal and start at 100mg and go up. Got to 400 and when my numbers dropped dose was dropped to 300 because of side effects (especially muscle, bone, back and joint pain ) got a little better but PCR started back up so back to 400. The longer I stay the worse I feel in fact I have forgotten what it is like to feel good. My numbers have gone down so just trying to manage and see if my PCR will drop more. I am nervous about going to Sprycel even though it was recommended by Dr. Drucker. I worry that 50mgs of Sprycel won't be enough since 400mgs Bouslif isn't getting me to mmr.

[lulusflyin]

Thanks all.  Doesn't seem like bosulif is such a great alternative.

 

My magnesium is normal and I did try supplements at one point (the "Calm" one) and it was hard on my stomach.

 

My doc (at SCCA/Fred Hutch) is less interested in dropping my Sprycel dose than in getting me to a deep response ASAP so I can start the clock for stopping drug.  I'm kind of inclined to go with that for the moment, though I agree if things are just staying as MMR for awhile I will see if lowering the dose further is a long term option.

 

I will work on adding my history to my signature.  Sorry about that!

[scuba]

"My magnesium is normal and I did try supplements at one point (the "Calm" one) and it was hard on my stomach."

 

Blood levels of magnesium do not indicate deficiency. Our blood plasma MUST maintain a narrow range of Magnesium or we die. This is also true for sodium, potassium and calcium. If a deficiency starts to occur, our blood pulls magnesium from our other tissues (muscle mostly (including the heart)). This is why you can have muscle cramping and normal blood magnesium levels. Supplementing with a quick absorbing magnesium will reduce this deficiency and avoid stomach upset. I suggested magnesium taurate. Magnesium Oxide can cause digestive upset as well as poor absorption.

 

(http://www.health.co...eficiency-food)

 

The above article uses the term magnesium "inadequacy" instead of deficiency. Taking TKI's causes magnesium depletion. Our bodies will take magnesium it needs from muscles - hence cramping. 

 

I can't stress enough the importance of making sure you have "adequate" magnesium intake.

 

http://www.todaysger...050613p30.shtml

 

Muscle cramping is a sure sign of inadequate magnesium - regardless what your blood tests show.

[gerry]

Interesting how the TKIs have changed the focus of docs. Moved on from trying to keep us alive to getting a quick response so that you can have a go at stopping. :-)

[lulusflyin]

Thanks Scuba- I will definitely check out taking a magnesium taurate supplement! 

[scuba]

 

 

Thanks Scuba- I will definitely check out taking a magnesium taurate supplement! 

 

PM me if you want to know the brand I take.