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Sprycel Side Effects

As mentioned in my first post I’ve been on Sprycel (100mg) since Jan 14 2018 after diagnosis in early Jan. I continue to struggle with managing the side effects and emotional aspects of the diagnosis. See summary below. Any tips / guidance would be much appreciated:

Blood CBC - Original: RBC 3.81 x 10^12 L, Hemoglobin 120 g/L, WBC 127 x 10^9 L, Platelets 674 x 10^9 L, Abs Neutophil 86.79 x 10^9 L

Original BCR/ABL1 P210 IS: 35.4828 %IS

Spleen Enlargement: No evidence

Blood CBC - Current: RBC 3.64 x 10^12 L, Hemoglobin 113 g/L, WBC 3.25 x 10^9 L, Platelets 183 x 10^9 L, Abs Neutophil 1.80 x 10^9 L

Ongoing Side-effects

- constipation (currently taking milk of magnesia and stool softener - docqlace)

- chest pain and rapidheart beat (up to 120 bpm at times) - no evidence of trauma / issues / damage from EKG, echo, event monitor readings but I feel dizzy when I stand, feel my heart pumping and experience chest discomfort - everyone tells me it’s stress/anxiety 

- overall anxiety regarding diagnosis: I am not optimistic at all about my prognosis and am concerned about life expectancy with CML (I’m only 39).

- BMT - I inquired about HLA typing with my siblings (we are located all over the world) in the event that a bmt is needed down the line but my doctor wouldn’t support a requisition at this time given my progress so far - has anyone else coordinated overseas HLA typing independently?? 

 

 

 

 I have been on Sprycel 100 since 8 Nov 2017, having been diagnosed in October 17.  My WBC was 330, my spleen was massive and my consultant described me as a "woman in trouble".  

Since taking dasatinib, I have constant bone pain, and also had a weird heartbeat sound in the ears for a few weeks, but I think this was due to my red blood cells dropping to 80.  There was talk I would need a transfusion, but in the event my reds have started to creep up.

The heartbeat in the ear thing has all but disappeared and this has coincided with my reds rising - might be a coincidence, who knows.

I also have a bit of constipation, but drink loads of water and this helps no end.  Also seems to help with the bone pain etc.

I have CML and there isn't a darn thing I can do to erase that.   I am just thankful that I have a cancer that is kind of treatable and that I will live to see my 13 year old grow up and have his own children.  My best friend has just had breast cancer, and, whilst we will all have to live with CML for the rest of our lives,  our treatment is less invasive (normally) than other sorts of cancer - a bit of a positive to think about!!

I also take real heart from reading on this site, and others, about people that are living and continuing to live long and relatively healthy lives - I would urge you to feel as positive as you can as to do otherwise will just hurt.  Don't beat yourself up about stuff you can't change, but look at what you can change.  I want to alter my lifestyle and to start doing things I want to do, rather than continuing to work at stuff I can't be bothered with any more!!  

 

What Libby said!

Have been on 100mg Sprycel  for  15 months, the first few months are not fun but it does get better. I have gone thru the same problems, when the heart skips a beat or starts to race I get up to check my blood pressure, o2 saturation and it's all fine. With blood work and PCU in a normal or downward trend I know the Sprycel is working and I'm ok with that, just put one foot in front of the other and keep going down the path.  

I was told that the heart beat sound in the ear has to do with
the high white blood counts in the blood stream swishing through the ear canal.
Mine sounded like somebody was walking around my head in a pair of wet slippers.
It went away when the white count went down. It was louder when I tried to sleep.

As for the other side effects it seemed to me that everything that was ever wrong
with me in the past came back. An old knee injury, some asthma, foot problems and of course
the chemo brain fog. All this unpleasantness lasted for about three months but slowly subsided
and after about six months it was mostly gone.

At three months the depression came. That was the toughest one to overcome.
I decided to get back to my before life would be the best medicine.
It was hard because I didn’t want to do anything but sleep it all away.
All things are better now. It just takes time. As long as the leukemia keeps declining,
be happy.

Just do what you can to be alive in the day your in. Small projects at first.
There is a high likelihood that you will live a mostly normal life.
Just as long as average people and have just as much satisfaction.
The odds are in your favor.

Romo

I live in London and my sister is in Ireland. It was fairly simple - I was given an envelope with some EDTA vacutainers and some paperwork and she was to get the blood taken at home and have it posted back.

She works in a hospital anyway, so in the end we just got her hospital to do the HLA typing as it was easier that way. But the other way was pretty simple too. She's a match, but I'm sure we'll never have to avail of that.

David.

Received my weekly CBC results. Platelets are rising (now  at 227 x 10^9 /L). Hemoglobin (113 g/L), absolute neutrophils (1.8 x 10^9/L) and RBC (3.6 x 10^12/L) are stabilizing. WBC has dropped from 3.25 to 3.05 x 10^9/L. My Mean Platelet Volume (MPV) has also dropped from 9.1 to 8.6 x 10^9/L. Has anyone else had experience with MPV decline? Should I be concerened about any of these trends/levels???

You are doing well. Platelet count rising to mid-normal levels is a good sign.

You are very early in treatment. Your blood system has to regenerate from what was a largely leukemic one to more normal. As Leukemic cells die off, it creates a "hole" sort of speak which has to be filled with normal cells. It takes months and sometimes years for this to occur. For many, blood counts stabilize at a new normal for them which is usually lower blood cell counts overall compared to the general population.

MPV reflects a mild anemic condition where fewer red blood cells make up lost oxygen carrying capacity by increasing red cell volume. MPV is not as important in context with hematocrit and hemoglobin. Those last two measures, as long as they are near normal are more important regarding red blood health and ability to give you stamina. It's normal, in other words for MPV to be high for people taking TKI's and having lower red blood cell count. My MPV remains quite low and has been for years, but I am also PCRU, take only 20 mg. Sprycel and maintain near normal hematocrit and hemoglobin. My RBC's barely go above 3.8. The higher your RBC's manage to rise, your MPV should decrease. It would be a good idea to take an iron supplement (heme type) on an empty stomach in the morning to maintain your hemoglobin levels.

Keep monitoring your CBC until your blood counts stabilize. Sprycel can cause myelosupression of the normal blood system. Dose modification is the usual treatment response when that occurs.

Scuba  MPV is mean plalet volume it is the size of platlets. I think the one you are referring to is RDW 

Thanks for the correction - must be the fast I am on )#(@)@!_(!  ... not reading straight.