9 replies to this topic

[mtm8766]

My mom was diagnosed in December 09 and has been on Gleevac since the beginning.  Her side effects were horrible with the gleevac.  Her onc now wants her to start Sprycell.  The onc said nothing about clearing her body of the Gleevac, like so many of the posts state they did.   I'm very nervous about this switch and am trying to figure out what to expect.  I live with her so I see on a daily basis what she goes through more than my siblings.  Can anyone help?  Thanks

[hannibellemo]

Mary,

Your mom should have a 'wash out' period between drugs, a week is typical. I would demand that for her. These are very powerful drugs and she will likely have side effects from Sprycel, too, at least at the beginning. It took me almost 6 months to acclimate, but then, Gleevec was very kind to me with relatively few, and minor ones at that, side effects.

I was also MMR within 9 months so it was all worth it!

Let us know if she has really bothersome side effects - headache seems to be the most common and for some they can be daunting. These are usually much improved in a week or two and completely gone by 4-6 weeks. We can help her through them.

Good luck!

Pat

[Marnie]

Hi, Mary. . .

I switched from Gleevec to Sprycel recently.  After hearing from so many people on this site, I suggested to my oncologist that I start with a half dose (50 mg) of Sprycel.  I asked him how many days I should take a break before beginning Sprycel.  He pulled out one of his many medical books, looked it up, and told me to skip meds for 4 days.

This worked very well for me.  I had a minimal headache for the first couple of weeks, and since then, pretty much no side effects at all.

I don't advocate doing anything without telling your doctor, but I would suggest that your mother have him/her write a prescription for a 30-day supply of Sprycel 50 mg tablets.  That way she can take her drug break, and then start the meds with 1 pill per day.  After 4 days or so (she and her doc can decide) then go to 2 pills per day (taking them together).  If this works out, then her doc can write the next scrip for 100 mg pills.

With the full 30-day scrip, she'll end up with a few extra pills at the end of the month, which certainly doesn't hurt.  I like to try to build up an extra supply of pills as a cushion.

While her oncologist may not know every little detail about cml, he/she should have the resources to find the appropriate information, and should have the professionalism to do the research appropriate for his/her patients.

Good luck.  Sprycel has been wonderful for me, so I wish all the best for your mom.

Marnie

[mtm8766]

Thank you for the responses.  We feel we are getting nowhere with the current onc and and actually have an appointment with a new one on April 25.  Current doc is unsympathetic to all mom is going through.  She is an MS patatient, has a history of breast cancer (02), thyroid cancer (05) and now the CML in 09.  Current onc increased the dosage of the Gleevac about 6 months ago and won't give any assistance to mom with the side effects of the Gleevac with the CML still bleeding through.  The cramping and charlie horses were so bad last week I called for a mild muscle relaxer for her.  Doc said "no, I'm not comfortable with that, if its that bad bring her to er."  It just really frustrated mom and me.  My mother needs someone sympathetic to her case, not cold hearted, she been through too much in her life and this was the final straw.  I was hesitatant to switch because the same hospital has kept her alive through the last two cancers but enough is enough.

Did anyone get charlie horses with Gleevac and continue to get them with Sprycell?

[VickiW]

Morning Mary!

I was dxd in march of 2007.  Switched to Sprycel in spring of 09.  Had horrible cramps (and then worse things when my dose was increased) the entire time I was on Gleevec.  Taking magnesium and drinking tonic water really helped.  However, as soon as I switched to Sprycel the cramps disappeared!  I totally agree with everyone here that you need a "cleansing" period between drugs.  If your onc says no, do it yourself!  Just fill her new prescription and don't start her for a few days.  Trust me, she will really appreciate the break.  It will give her a couple days of feeling better before dealing with the new, initial, side effects of the Sprycel.   double dosing your mom could cause horrific side effects!   Sprycel is much easier to live with (I think ANYTHING is easier to live with than the Gleevec side effects) but in the beginning (first few days to a week) she may have some nasty headaches and bone pain.  My Onc sent me home with extra pain meds when I was switched, just in case, but fortunately in my case I didn't need them.  My pain and headaches only lasted less then 48 hours.  Everyone is different, but those seem to be the most common, but the good news is, they go away!  And for most of us, even those of us who had a horrible time with Gleevec, the long term side effects of Sprycel are mild and tend to cycle.  (aka come and go).  I have been on sprycel myself for 2 years now and just finally hit PCRU.  (never got there on Gleevec).  Keep us posted and feel free to contact me if you feel the need.

Hugs and prayers to you and your mom!

Vicki

[Marnie]

Hi, Mary. . .I had pretty bad cramps and GI issues while on Gleevec.  Not really charlie horses, but my hands and feet would cramp up, and fingers/toes would lock in the most bizarre positions.  Very painful. .. and a bit of a problem when it happened on motorcycle rides!!

Since starting Sprycel (about 2.5 months ago) I haven't had a single cramp. The cramps had been happening 4-5 times every day. . .now down to absolute zero!!  And the GI issues have cleared up pretty much entirely.  I hadn't realized how fatigued I felt on Gleevec, and just how generally lousy I felt, until I started Sprycel.  I'm still pretty tired. .. but part of that is that I'm a middle school teacher, and the job is exhausting. . .but I feel a zillion times better on Sprycel.  In a couple of weeks, I'll go in for my first PCR test since switching drugs.  Can't wait to see if my numbers have improved.  

I have found that Sprycel makes me even more sensitive to the sun than Gleevec did, so be sure your mom uses lots of sun screen and a hat when she goes outside.  Other than that, I'm pretty much thrilled with Sprycel, and I hope that your mom is, too.

I'm glad to hear that you are looking at finding a new oncologist.  Your mom needs to be comfortable talking with her doctor.  Sounds like that is not the case now.  If the doc isn't open to discussions, and won't listen to the patient, then the doc needs to go.  Your mom deserves better.  She's lucky to have you as an advocate.

Marnie

[mtm8766]

Thank all of you so much.  Mom actually started crying as I read your responses to her.  She finally feels like there is hope.  And you described what I called charlie horses perfectly, affecting her also in the same way.  And we have tried tonic water, slo-mag, soap in the bed, and even quinine to help and like you said it does a little but not to the point where she has any quality of life.  I'm hoping switching to the new doc is also going to help as far as getting someone to listen and actually hear what she is saying.

Good luck to all of you with your treatments.  My prayers are with you and all of your families.

I will let you know how it goes.. 

[Marnie]

Glad to be of help.  I've learned a lot from the people on this site, and we're all about sharing information to help one another out.  I had heard horror stories of monstrous headaches when starting Sprycel, and that's why I started on a half dose (50 mg).  I would highly recommend that your mother start with a half dose (I did for 5 days. . .after taking a 4 day drug break).  In order to do that, she will have to have a scrip for 50 mg pills, because you are NOT SUPPOSED to break Sprycel tablets.  So that would be 60 pills at 50 mg.  When she goes to full dose, she should take two 50 mg pills at the same time.  That's what I'm doing right now, though when I call in my next scrip, it will be for 100 mg tabs. Obvioiusly, I'm not a doctor. . .so she should talk over the options with the new oncologist.

Sending good vibes your mom's way.  She's had more than her fair share of stuff to deal with.  I'm glad that she's switching to Sprycel.  It has been great for me!!

Marnie

Heading out for a motorcycle ride right now. . .while the weather is beautiful.  Snow is supposed to be on the way. . .dang!!  I thought Spring was here to stay, but maybe not!

[Tedsey]

Given all that your mom has been through, if possible, I would ask for a break between drugs.  I went straight from Gleevec to Sprycel and I could barely take care of myself.  My husband had to take off work to care for our toddlers.  Never before had I been in a situation where I could not take care of our children.  So, I wouldn't recommend this route; even to my enemies.

Despite some low counts, I feel pretty good on Sprycel.  The cramping is gone.  The headaches were tolerable and only lasted a couple of days.  I think we all experience a drug change differently.  I hope your mom has a smooth transition with excellent results.  She deserves it.

I grew up with a mother who had M.S.  I know how difficult it is to live with that malady alone.  My father had cancer when I was a teenager and has had a ton of health issues.  So, I totally understand how hard it can be and what it entails to be a caregiver.  I grew up in hospitals.  You rock!  Your mom is incredible .  She has survived so much!!!!!!  And she is still here!!  What a blessing!  It makes me feel that for many of us, especially on this board, the human spirit is extremely strong.  I wish her little pain and sustained remissions all around.  And what a blessing you two have each other.

too

Oh, and get rid of that crazy onc.  Obviously, he has suffered little in his life or he is so limited as a human, he is incapable of any empathy.  Too bad for him, but not too bad for you and your mom.  Kinda weird he went into medicine--probably for the money or the glory (those two pulls make the worst doctors).  It is wonderful that we have a choice to seek better care.  It takes more than just I.Q.  It is overrated, but it still gets anyone into med school.

Take care of yourself too!  Please report how things are going with the new onc and Sprycel.

Tedsey