33 replies to this topic

[utopiann]

Well, friends, it's been FOREVER since I last talked with you all.

After 5 months of seeing my BCR-ABL counts slowly start rising again, my onc is switching me over to Sprycel. Not too worried about the transition, but just wanted to check in, say hey, and let y'all know how I'm doing. If I get any crazy side effects I'll be sure to post for some sympathy

Wishing y'all love and good health!

-j

[LoriM58]

Good luck Jadrian - I am new here and it's nice to meet you.   Dx on Feb 4th and took my first Gleevec tonite.   Wishing you the best on Sprycel.

-Lori

[Marnie]

Hey, Jadrian . . .

I just switched from Gleevec to Sprycel, and I am having far fewer side effects.  Don't know how it's affecting my PCR yet, but hopefully will get some numbers soon.  I hope that Sprycel treats you as well as it seems to be treating me!

I just got a packet from Bristol Myers Squibb about their Sprycel Support program.  I need to call them for more info, but it looks like they may cover the cost of my copays. . .at least it sure looks like I meet the eligibility requirements.  I do have pretty darned good insurance, but the monthly co-pays still mount up.  When I see my onc next week, he'll write a scrip for a 90-day supply, but he didn't want to start out with that until we saw how I tolerated it.

Anyway, I just googled "Sprycel Support" and then registered for the program.  Not sure yet exactly what that means, but I'll let you know as soon as I get more

[Ludwigh]

Jadrian, Sprycel has been a lot better for me.  Bone pain at first but now just my normal self, with hardly any side effects. I have bin on sprycel for over a year now. PCRU after 6 months.

Rock on,

Terry

[td1961]

Jadrian,

Been on sprycel 100mg per day for 17 months now. At first had pretty bad headaches, later neuropathy in my hands. Mostly resolved now. Side effects are nothing like gleevec! No cramps! Yay! That you can look forward to. However, be sure to get you onc to do a baseline ekg and chest x-ray. I'm now having issues with PE and fluid retention and since my onc didn't do baselines, he suggests that it has nothing to do with sprycel. Yeah right! Probably off to see a new onc and a lung specialist.

Tracy

[hannibellemo]

Hi, Tracy,

I would definitely be looking for a new onc if your current one does not know that PEs, while not necessarily common with Sprycel, are definitely a possibility and can occur at any time.

Good luck!

Pat

[hannibellemo]

Hi, Jadrian!

Good to hear from you. Have been on Sprycel now since Oct. 2009 and have been MMR since April 2010. I had to stop Gleevec due to liver toxicity and I really had no side effects with G. Can't say the same about Sprycel but I love how it is working for me. My major complaint now is not directly related to Sprycel other than I can't take the meds I used to take to control acid reflux.

Trying to find a work around for that!

Good luck, I'm sure you will do great!

Pat

[utopiann]

Thanks for sharing your own personal Tales of Sprycel with me

Quick update. I am LOVING that the occasional nausea and indigestion that I got a lot on Gleevec is GONE. That said, it's been replaced by a constant headache. I wake up with a headache, spend my day with it, and go to sleep with it. So far, I've hesitated to take any ibuprofen or acetominophen for it because of the increased liver damage in addition to that caused by the TKI. Trying to just cowboy up on this one and deal with it until either I get used to it or it goes away, and some medicinal marijuana is also helping a lot.

That said, the constant monster headache is still a small price to pay for keeping me healthy, and I'm hoping for good news about BCR-ABL counts going down again over the next month or two. I'll keep this community posted, of course.

Best wishes of good health and happiness to you all!

-jadrian

[mdejesus]

Hi everyone,

New to the site. I was diagnosed with CML July 2009. I was on gleevec for 18 months and had really bad side effects. I finally went to Moffit Cancer center and saw an expert there that advised me that I was on in for too long and nothing was happening. I was told about 2 other pills that I could try one being Sprycel. I've been on it since Sept 2010, I did have a rough start getting headaches everyday when taking the pill at night before going to bed. I called my MD and told him what was happening, he advised to change the time of day from bedtime to daytime. So I started taking it during lunch, glad I did since I do not suffer from headaches and longer.

Hope this helps someone.

[random]

Hey Jadrian, please keep us up to date. How do you feel?

[marechos]

Hi Tracy,

    New here but was diagnosed in Sept. 2009 and am on Sprycel after severe rashes from Gleevac and Tasigna. I see the experts at Univercity of Pennsylvania where the gene was discovered. Learned alot since daignosis. You should of had a baseline ECG and one every 6-12 months after that( I have a backround in Cardiology and asked cardiologist friend about effects on heart) CML itself effects heart along with other organs prior to diagnosis. I have an enlarged heart due to excessive white cell but other then that the other organs are back to normal. I altered my diet restricting sodium intake and that helps with the edema( fluid retention) also cut back on all sodas and drink lots of OJ ( natural juices). Having a medical backround spanning 27 years helps alot so my experiences are different. Anyway try diet first. The only side effect I had was a mild rash that went away but could have been left over from Tasigna since that one was extremely bad causing a skin infection and my hair to fall out. Been on Sprycel since March 8.2010 and wouldnt go back to others.

As for headaches Chocolate really does help works better than aspirin.

Good luck and if you have questions you can go to www.mypennmedicine.com and ask the experts online

   Mary

[mmdojr81]

Hi everyone,

I have been on gleevec for about 6 years now and have been doing well. I have had a complete cytogenetic response and my side effectys include high liver panels, some nauseua, and hair loss

I was wondering what you all think I should do.

I want to try sprycel to see if I can reverse the loss of my hair. It sounds very vain but if you are a man and you think you are losing your hair, it is all you think about.

I have discussed it with my doctor and as we left it I was going to try some minoxidil (rogaine) and get back to her when I see her next. The minoxidil worked for a while but now it seems that it stopped.

I know there is problems with fluid retention and a number of you said headaches but I just wanted to know if anyone was having the same issues with gleevec and had a turn around with sprycel.

Thanks all,

Keep fighting

Mario

[GerryL]

Hi Mario,

I think there are people that have had short term hair loss with Sprycel and their hair eventually grew back after a period of time. Sprycel caused the hair loss.

Do you definetly feel that your hair loss is due to Gleevec and not something that was going to occur naturally anyway?

[mmdojr]

Gerry,

It is hard to say. I know that my hair loss started when I went on Gleevec. My white cell count was so high I went on the max dose of 800mg and also on hydroxyurea and ane other med which I cannot remember.

I was on that dose for a couple of months and that point my family and girlfriend noticed the hair loss all over but did not tell me. Fast forward five years later my hair started to thin over my whole scalp and not in just one place.

I picked up some minoxidil and after a few months of use I stopped because I didn't notice a difference. Then suddenly this last year I noticed a real drastic hair loss on the front of my scalp. So, I went back on minoxidil and within a month it came back.

Now, it just seems to be getting thin, coming back and so on and so forth. I have family that lost thier hair but never like this. It just doesn't seem genetic.

I also have high liver counts which makes me think I should switch to sprycel. I have heard that the numbers are better when switched from gleevec.

I will see my doctor next month and we will see what she says. The last time I left her office we were going to see the outcome of using minoxidil. Her only concern with sprycel was the fluid retention which I am not really seeing anyone complain about.

Thanks for the response and hope you are doing as well as I am,

Mario

[GerryL]

Hi Mario,

Has the doctor diagnosed Alopecia http://www.medicinen...ata/article.htm? Stress can be one of the things that brings it on and there is nothing like getting diagnosed with CML to give you a bit of stress.

I can understand how you feel about your hair loss, one of my side effects from Gleevec is keratosis pilaris on my face. It is not noticeable to anyone visually, but I feel it whenever I touch my face. I'm not always 100% comfortable when my boyfriend touches my face, as I'm not sure if he notices it. I think it's because we feel we've lost a lot of control in getting CML that it would be nice to have some control over the other things that are happening.

As for fluid retention - we women tend to suffer from it a bit more then men. I get if from Gleevec and if Sprycel is worse, I'm not sure how I'd go. But if you swap and worse comes to worse and you get some fluid retention, there is medication you can take for it. And you could always swap back (I'm assuming you're in the US - things are a little different here in Australia for swapping meds) if Sprycel doesn't work for you or the side effects are worse.

Other than that I'm doing well, due for my next lot of results next month.

[mmdojr]

Gerry,

I am glad to hear you are doing well. Yes I am in the US, Los Angeles.

How old were you when you were diagnosed, if you don't mind me asking?

I was 25 when diagnosed and I am now 30. Really was a life changing moment for me.

I totally agree with the control issue. Sorry to hear about the side effects the meds are having on your skin.

I do feel fluid retention in my legs sometimes and in the beginning my eyes would get puffy.

If you ever have any questions about anything feel free to right. Most of these discussions are so old that it is hard to find people to respond.

I will let you know what happens with the sprycel if I make the switch.

Thanks again and take care

[Txmom.4]

Just enrolled in their support program, completely covered my copay, which is so nice right now.  I do know my case manager said she didn't know how long it would be around, but it is a new program, so she hoped it would be around for some time.  Good luck with the sprycel, I am newly diagnosed and just started the medication.  Day one rough, day two better.....hoping I will have more good than bad days ahead, we'll see.  Best of luck!

[Marnie]

Hi, Txmom. . .

Just an FYI for the MySprycelSupport Program. . .I just found this out the hard way.  There is a window of how soon you can order the meds and still have them cover your copay.  I apparently ordered my Sprycel from my mail order pharmacy too soon. . .1 day early, it turns out. . .and they didn't pay the co pay that month.  I'm sure there was some small print somewhere that I didn't read.   I'm not knocking the program. . .I surely appreciated it, and hope that they continue it.  Just be sure that you know the details so that you can get maximum benefit from it.

Good luck, and I hope your headaches go away soon. I don't have them at all any more.  Been on Sprycel since mid-January and it has been great for me.

Marnie

[Txmom.4]

Marnie,

Thanks so much for the heads up, I will definately look into that!  I don't remember anything about ordering procedures specifically, but now I will be checking it out!  I am hoping these headaches will lessen over time like so many on here.  Again, thanks for the post!

[RAHIM]

Allows  me to say to you DEAR Jadrian!

I am French Spanish Danish and Arabic-speaking, English language I can speak but the writing is very hard for me, and I  always translate when I have to write a foreign language, etc ... Jadrian I just translated your answer where you say that you're gone from Glivec for SPRYCEL, it's funny that I've also done the same sequence, etc.

Dear Jadrian, I hope we can discuss our illness you and me, for I have much to tell you.
Many warm greetings from a (CML)

ABOU Nabil