50 replies to this topic

[cfoley1215]

Since ever more people are having Gleevec issues or not having good response or for whatever reason are considering a switch to Sprycel I thought I would share how my switch went.

I was on Gleevec from diagnosis in Jan, 2006 to this August.  Was PCRU.  Switched to Sprycel to see if the side effects would be better than those I was experiencing on Gleevec.  Well, let me tell you, after 4 years of feeling horrible (since I started having CML symptoms about 6 months before diagnosis), I feel so much better.  I have more energy, I'm so much more alert, the brain fog is gone, night sweats are greatly diminished.  And I'm happy.  I don't know if the Gleevec was exacerbating the depression that I take Prozac for (been medicated for like 10 years) or if it is just because I feel so much better, but my outlook is so much more positive now.

When considering the switch, I talked with 2 specialists because my onc doesn't have any experience with Sprycel.  Both of them said something to me that may help others.  You can always go back.  Switching to Sprycel won't cause Gleevec to stop working for you (if it has been, naturally).

So, don't know if it will help anyone but I just wanted to share my experience for those that are info gathering.  Hope everyone has a great weekend.

[hannibellemo]

Thanks, 1215 (can I call you, 1215?)

Your experience seems to be what I am hearing most from those who have made the switch. Some do point out that dasatinib is not without it's deterrents but on the whole they seem to feel better then they did on Gleevec.

I wonder if that is true for those who tolerated Gleevec well but just didn't respond or lost a response?

You have a great weekend, too!

Pat

[ChrisC]

It's so good to read the news of folks who have good results from their switch to Sprycel. I've read elsewhere that, just as with Gleevec, after a few years there can, for a few folks, still be changes that cause a shift to another drug, but we take it one day at a time. There are no guarantees yet, just that we know it's best to keep taking our medicines if we want to keep going!

Just to add that my experience, since switching to Sprycel on May 27, 2009, has also been one of transformation, from miserable with the side effects of Gleevec to what others have described, feeling good again. There is still the fatique factor, for me, but bone pain and headaches are rare. I only had one night of discomfort when I first switched, and it's been great since then. My CBC numbers are low since switching, and they were normal on G, but we know that is often reported. Also, my weight has been stable after regaining 20 of the 30 lbs. I lost pre-diagnosis.

Best, as far as my onc is concerned, are the test results   He says it really makes his day when one of his leukemia patients is getting better (most, he says, aren't, but then he hasn't many CMLers). He is doing a great job!

I have a record of my PCR results since diagnosis, performed every month, and we have watched the the numbers go down, then go up when I had to take a 4-week vacation from G from mid-Apr. to mid-May, and now the PCR numbers go down nicely on Sprycel.

However, I've never understood the difference between the "BCR-ABL" numbers that are reported. The reports give two numbers, and they aren't the same.

In my May 18, 2009 report, after 4-wk. G vacation, when the CBC and PCR numbers all jumped up and we placed the order for Sprycel while I took G 300 mg for a week, as we awaited the Sprycel: "BCR-ABL H  3.986, Reference range:  0.000  This real-time assay shows the expression of the BCR-ABL fusion transcript which usually results from the t(9;22) (q34;q11) translocation. The ratio of the fusion transcript (ABL) is shown." I get it that the baseline of non-CML folks is 0.000 and that my unfortunate number at the time was high (H) at 3.986, up from April when it was 0.440, which was up from March's 0.229. Both of these were pre-G vacation, so it shows that I wasn't getting enough G on the 200 mg I was taking.

Then the next page in the May 18 report says: "BCR-ABL Ratio  0.015  This assay is a real-time quantitative PT-PCR assay. Extracted sample RNA is subjected to a real-time RT-PCR reaction to measure the quantity of the two types of BCR-ABL fusion transcripts (b2a2/b3a2 and e1a2). . . ." (it goes on and on)  What throws me is that the April "BCR-ABL Ratio" number was 0.973. This shows that while the "BCR-ABL" number went up while I was on the G vacation, the "BCR-ABL ratio" number went down. And in June (two reports, one at the beginning of the month, one at the end), the "BCR-ABL" number went down, 1.358 to 0.122; and the "BCR-ABL ratio" number went up, 0.483 to 1.530.

Which one is the PCR number to follow? (I think I know — unless I don't. The one that goes down, right? So that is the straight "BCR-ABL" number, not the "ratio" number.)

In my Aug. 10, 2009, report, after 2.5 months on Sprycel, it says: "BCR-ABL H  0.007, Reference range:  0.000" so I can see the good work that Sprycel is doing! I don't have the "BCR-ABL ratio" number for August yet, as I always have to ask for it the next month.

I am happy to look for the trend rather than be fixated on specific numbers, but I'm curious what the two numbers are measuring exactly. Sorry if this has already been explained; I do still have a degree of brain fog, even with the Sprycel. I just don't mind so much now LOL.

At dx Oct. 22, 2008, my WBC was 459,000 and my PCR "BCR-ABL/ABL ratio" was 21.225 (I don't have the non-ratio number from dx).The G was doing it's thing, slowly, but was destroying my quality of life; so after three months on Sprycel my "BCR-ABL" is listed as 0.007 — I am getting there. BTW< the WBC is now a low 2.67.

I just don't know if comparing the ratio to the other number means anything. My Dec. 2008 "BCR-ABL" was 5.093, and the ratio was 0.091. I do get confused by this. Thanks for any explanations, or links to where it's explained.

Best of numbers to all!

Chris

[Trey]

Chris,

Regarding your PCR numbers, here are some thoughts.  First, the raw (non-ratio) BCR-ABL numbers are not normally used.  Most CML PCRs should be done using "Relative quantitation", which compares BCR-ABLto an internal "control gene" (such as ABL or b2m). Results are expressed as ratios (percentage) of the BCR-ABLto the control gene. Your lab is  doing that, but is also doing an "Absolute quantitation", which measures the absolute amount of a BCR-ABLin the sample.  That number is not very useful. For a very rough analogy, if someone simply states that butter has 200 calories, it is meaningless unless you also know the volume involved -- is it 200 calories per ounce, pound, acre, hectare, or what?  The control in this butter case is the volume.  So a PCR result should be put into a ratio with some other control gene in the same sample.  That is why PCR reports are usually expressed as a percentage (ratio).  Most labs seem to now use "ABL" as the control gene.  So I would use the ratios as the best indicator, even if they seem to vary.  A PCR has a margin of error of approx 1/4 log - 1/3 log.

[AliceJane]

I am 55, and was diagnosed in Sept,2007,  I began Gleevac in Oct,2007, the Gleevac stopped working in Nov/Dec, 2008 and I began the Sprycel in Jan, 2009.  basically, the Gleevac work for about a year and then it didn't and I have been on Sprycel for 9 months.

Since on the Sprycel, I am not having near the indigestion, and stomach pain.  But I am exhausted, I am a lot more tired with the Spriycel.

I have been on antidepressants for over 20 years. A couple of months ago the Dr. changed me to effixor. and I am happier, and have better out look.

But it has not helped the exhaustion.

This month my priscrption had no refill and I did not realized that, then there was some email glitch between the druggest and the drs office, as a result I was off my Sprycel for 5-6 days.  the last 3 days I was off and for about 4 days after I was on the Sprycel, the exhaustion was gone, I felt better than I had in years.  But since, the exhaustion is back.

I prefer the Sprycel, other than exhaustion, fewer side effects.  But I sure am sick of being a couch potato.  But grateful for Sprycel.

I was also tired on the Gleevac, and had a lot more bone pain episodes and it was doing a number on my espogus(sp) stomach.

[ChrisC]

Trey,

Thank you so much for your ongoing help. Your thoughts are indeed showing the way through this situation for all of us!

Please tell me if I have this right:

"BCR-ABL Ratio" number (we can use these numbers, right?):

10.23.08-dx 21.225

• Began Gleevec 400 mg 10.29.08

12/01.08 0.091 Onc said this date's #s were to be my baseline.

• Side effects to Gleevec extreme; took a one-week vacation from G.

• Reduced G to 300 mg, then 200 mg until April 18, when I took a four-week vacation from G.

02.02.09 1.104

03.02.09 1.256

04.01.09 0.973

• Gleevec vacation: 4.18.09 to 05.18.09

05.18.09 0.015

• Resumed G due to higher WBC (13.52, had been 4.+ for three months) while waiting for Sprycel.

• Also, higher platelets (1373; had been between 272 and 311 for four months)

05.27.09 Began Sprycel 100 mg

06.09.09 0.483

06.30.09 1.530

08.10.09 -.- None (will ask for this page of the report when I see him on Sept. 30, 2009.

I will go for new CBC and PCR blood work on Sept. 14, 2009.

It looks to me like my body had its best PCR number after I'd been on a month-long vacation from Gleevec, even though my WBC and platelets shot up without the medication, as my body shifted into its own defensive mode. Doesn't this look like something could be said for what the body can do to heal itself if given a supporting treatment, rather than an exclusively chemical treatment?

It appears that since starting Sprycel, there is a gradual increase in the PCR numbers, but we need the August and September numbers to see what is actually happening.

My desire is for my body's intelligence to be allowed to work without the lifelong habit of relying on the medication. Someone posted a link (below) and I read this and wondered if perhaps any of my blood had been saved from the daily leukapheresis sessions I had had a couple of hours a day for over a week when I was in the hospital after dx, to lower my WBC. I've hesitated to ask my onc more about it, until I have a better understanding of it. I did give him a printout of the article, which he didn't respond to. Any ideas?

http://www.caring4cancer.com/go/cml/news?NewsItemId=20080620elin022.xml

"BCR-ABL" number (we can ignore these numbers, right?):

10.23.08-dx none (wasn't in the report I received, only the "ratio" number.

• Began Gleevec 400 mg 10.29.08

12/01.08 5.093 Onc said this date's #s were my baseline, though he doesn't look at this number.

• Side effects to Gleevec extreme; took a one-week vacation from G.

• Reduced G to 300 mg, then 200 mg until April 18, when I took a four-week vacation from G.

02.02.09 0.325

03.02.09 0.229

04.01.09 0.440

• Gleevec vacation: 4.18.09 to 05.18.09

05.18.09 3.986

• Resumed G due to higher WBC (13.52, had been 4.+ for three months) while waiting for Sprycel.

• Also, higher platelets (1373; had been between 272 and 311 for four months)

05.27.09 Began Sprycel 100 mg

06.09.09 1.358 New baseline #s, says the onc.

06.30.09 0.122

08.10.09 0.007 This is the number my onc always uses, and he was very happy with this one.

I always ask for the last month's "BCR-ABL ratio" page of the report at the next appointment, because that was the number that I understood, from the explanations given here on this site, that were important, even though it is not included in the pages my onc gives me as I leave each appointment. When I'd ask for that missing page every month, saying it was the important one, I would always be handed the printout without discussion.

If I understand your interpretation, Trey, then we need to focus on the "BCR-ABL ratio" number in the PCR report, as the "BCR-ABL" number isn't giving us useful information. Correct? None of the numbers have a % sign after them, so hmmm, I've got to keep asking these questions.

Thank you so much for your attention and time in responding to this. I am very appreciative of getting this understood finally (I hope!)

Next, to see if my onc will accept my suggestion that we focus on this ratio number. Any links to explanations that I can use to present to him would be most useful.

One more question: is it reasonable to assume that in fact he's not conversant with CML enough to stay with if there are complications? I had a consultation with a specialist at Stanford in April 2009, but his manner was off-putting to me, though I respect his knowledge very much.

Chris

[Trey]

Chris,

First, when your Onc told you "12/01.08 0.091 Onc said this date's #s were to be my baseline" and then "06.09.09 1.358 New baseline #s, says the onc." -- that reflects a lack of understanding of the issues by your Onc.  The only useful PCR baseline is one that is done before taking any drug therapy.  I would ask him why he would think these PCRs could be some sort of baseline, and for what purpose.

Regarding the PCR numbers bouncing around, PCR results often do not go in straight lines, which is why watching trends over time is the best use of the data.  The next PCR numbers should start to show a more clear trend line, which will provide better information about your situation.  There are many variables in PCR testing, such as time lapse before the sample is tested.  For example, a blood sample will degrade by 50% by the 24 hour point.  So something as simple as one PCR done within 10 hours and the next done after 24 hours would yield very different results, even on the same sample.  The longer the time elapsed, the "better" the PCR result appears to be due to degradation of the BCR-ABL in the sample.

Whether the body can fight the leukemia on its own, I do not believe there is any reason to believe this theory.  I believe in vitamins, and eating well, and other healthy habits, but I do not believe any of these will destroy the leukemic cells on their own.  My personal opinion is that the healthy habits can help the drugs do their job, but without the drug therapy the leukemia will inevitably win the battle.  Your link to an article about using the own body's immune system to fight leukemia is one of many such studies about using the immune system.  I participated in one such clinical trial.  Some day this could be part of the solution.  For now, drug therapy is what works best for most people.

Regarding seeing the specialist and his demeanor, I would prefer to have an Onc who knows a lot about CML over one that has a nice personality.  Your situation has enough uncertainty to merit finding a CML specialist rather than working with a local Onc who does not know much about CML.

[specialk1957]

I was on Gleevec for approximately 7-months.  My WBC decreased from 350,000 to good levels of 4,500.  However, they kept dropping.  The lowest was 2,000 before I had a 2nd bone marrow biopsy and it was found that the Gleevec just wasn't doing what it was suppose to be doing.  This discovery was actually found by a 2nd opinion doc that I decided to see.  I still had the same amount of cancer cells in my marrow as I did when I was diagnosed and the doc felt they should have decreased by 50% in that amount of time on Gleevec.  I had very few side effects from Gleevec...mainly diarrhea.  Last month, the doc felt that I should switch to Sprycel and I was put on that drug.  The side effects I have are fatique and mouth ulcers (which have just been a nightmare) , but the biggest problem is low platelets counts.  When I started Sprycel, my platelets were 141,000 and just 4-weeks later, they are 22,000.  On Friday, I was told to stop the Sprycel for 7-days to see if my counts recover.  My WBC also is low at 3,800 and my hemoglobin dropped to 10.9 (which isn't bad, but dropped from pre-Sprycel #'s).  I need to get bloodwork done tomorrow and Friday of this week and see where I'm at.  I'm very worried if this doesn't work...what is next for me.  Has anyone else out there having this same problem?  I was glad to read that cfoley1215's specialists said you can go back on Gleevec because I was afraid that wasn't an option.

[HPL]

Hi Specialk1957...

The one thing I didn't see you mention, is if a mutation report was done on you ? That would help explain a failure on the drugs and could be a smoking gun.

Your story is remarkebly like my own. I was diagnosed with CML in Dec 08, and went on 400 mg of Gleevec. At the 6 month BMA, my hemotological response had been great, but limited movement in my fish, no Cytogenetic response, and PCR had gone from 15 to 7 (.3 log reduction from what I could calculate, nothing special). So they switched me to Sprycel in June, and all my numbers dropped even further, WBC went from averaging 4k to 2.5k, Platelets dropped from 200k to 46k, and I'm now slighly anemic. Both my dr. and I had high hopes for me 3 month on Sprycel (100mg), but turns out that my cytogenetics moved from 20/20 to 19/20, and the others were about the same.

So my dr. is running another mutation report (the one done in June showed no mutations), and we're trying to figure out why I'm being soo stubborn. My dr. is strongly leaning towards a transplant, and my sisters are being HLA tested. But I am also going to see OSHU to see if I could possible be a good fit for the Ariad study. I hear great things from Beth who has the known mutation that the other drugs don't work on, my question for others on the Ariad study, did anyone lose response or have no response, who didn't have a mutation, and are now in the Ariad study ?

When asked what my options are, my dr. is very hesitant to put me on a higher dosage of Sprycel, since he simply worries that it will suppress my numbers even lower, and it won't be a sustained response. Has anyone else had to face a similar situation, where you have a non-response for no appearant reason ?

Hans in Seattle

[specialk1957]

Hans,

Thank you so much for your response.  I cannot answer the question...was a mutation report done.  Recently, I did have an BCR/ABL blood test, but I don't know the results of that test yet.  I will find out Friday, however is that the mutation test? 

My second opinion doc mentioned that I should not rule out a bone marrow transplant, but I can tell you, I will be getting a 3rd opinion before doing that.  Hopefully, if it comes to that for me, one of my two sisters will be a match for me.  I never heard of the Ariad study, thanks for mentioning that.

I have a doc appointment this Friday and also will be seeking options.  One option that my 2nd opinion doc mentioned before even putting me on Sprycel was to try a higher dose of Gleevec.  I'm not so sure that is the answer, but I'm seeking any options at this point in time.  This is very frustrating.  I will be talking to my doc about the mutation test and I thank you for mentioning that.

Anyone else out there with the same problems, I would love to hear from you.

[tinac21]

cfoley1215,

I started gleevec 600mg for about 2 months, and it wasn't doing anything for my counts, so we tried 800mg. I can not even begin it list the symptoms with Gleevec, it was bad. Finally I started to respond and my counts went down from 371,000 to about 50,000 in the first 6-7 months. By November/dec I was in remission. Since then I have yet to reach that point again. I have been on Sprycel for about 2 years and would never go back. No more sever bone pain (I still have this but not nearly as bad), no more nausea, vomiting, bruises. If I miss one day on sprycel I will get sever headaches, and some days even with it and while starting my headaches were absolutely awful. I spent my first few weeks in a dark room with a bottle of Tylenol lol. Overall I have had a great experience, I mean it could always be worse.

Tina

6 years strong

[td1961]

Hi group,  just received my new 50 mg sprycel tablets yesterday -- only because the mail order pharmacy couldn't supply the 100 mg tablets originally prescribed by my onc. Apparently, they are out of them!?. This was my lucky day I guess because I originally asked my doc for 50 mg twice a day to triturate my way onto the medicine but he was bound and determined to make me do the 100 mg once a day no matter what I wanted!  I knew they were coming so I stopped taking my 800 mg/d gleevec yesterday in preparation -- again, not what I was told to do but I'm a stubborn patient! Har! It is amazing just how many side effects I was having that are now gone from my life after 24 hours off the gleevec! I intend to go "cold turkey" for the next several days taking neither med just to "wash out" the gleevec from my system. Hopefully, this will prevent the occurrence of side effects caused by the remaining gleevec in my bloodstream and the new sprycel acting together. I intend to start doing 50 mg on Saturday or Sunday while I'm home and can zone out if the side effects hit too hard. Depending on what happens, I intend on triturating up to 100 mg/d sometime within the next week. I will be doing two 50 mg doses twice a day -- much to the objection of my onc who wants then done both at the same time. However, since it's my body and my side effects, I think I'll be the one to decide! Shame on me! Sin first and repent in leisure I figure! He can only yell at me once! Har! Once I feel that I can do it without any bad side effects, I'll go over to the 100 mg dose once per day as my doc wants. Call me stubborn but I want to do this my way and go onto it slowly and purposely. Wish me luck and I'll let you folks know how its going after a few days or so.

Regards,

Tracy

[hannibellemo]

td,

I, too, will be starting dasatinib today (100mg 1x/day)! I've been off Gleevec for 7 weeks and 2 days (but who's counting) due to hepatotoxicity. I was on Gleevec for 8 months with a 3 week break due to low counts. Other than my liver hating G the Ph+ was responding nicely and I had no major (other than the liver which is ubermajor, I suppose) side effects.

Good luck - anxious to see how this affects us.

Pat

[td1961]

Pat,

Sorry you've had so much trouble with Gleevec and the liver counts. Mine started going up around the end when I left gleevec so I hope they will be coming back down with the new drug. Sure don't miss the side effects one bit but may be trading the devil for the deep blue sea, who knows?! But one item of good news. My mutation test came back negative. So, at least I don't have to worry about that being the cause. Still planing on starting sprycel Saturday. Good luck and I hope it works for you better than old gleevec. Cheers!

Tracy

[hannibellemo]

Tracy,

Great news that you have no mutations. Keep in touch, I think my e-mail address is on my profile if you want to reach me.

Pat

[ChrisC]

Good luck, Pat!

[hannibellemo]

Thanks, Chris - Good luck to all of us!

Pat

[Dana]

Thank you for sharing your experience...it has helped me a lot to hear of all the people that have already experienced Sprycel. 

I started Sprycel 3 months ago.  I was diagnosed August 2003 and took 400 mg of Gleevec for 5 yrs, then bumped up to 600mg for 9 mths before the side effect absolutly got the best of me.  I had the worst 3 months of my life in March, April, and May 2009.  My onc said that another lady that was diagnosed the week before me had just switch the week before I switched to Sprycel.  That made me feel a little bit better, that I was not just being a wimp and not able to handle the side effects of Gleevec.  I did not realize the stomach problems I actually had until I stopped  the Gleevec to wait for that to get out of my system to start the Sprycel.  I had a 2 week break from any medication for the first time in 6 yrs. and it was absolutely wonderful!!  My body had just enough break to want more!  When I started the Sprycel, I had the headaches for about 4 days.  No stomach trouble, just fatigue, fatigue, fatigue!!!

3 mths on Sprycel and I am back to some brain fog, but not as bad as on Gleevec, and of course the fatigue and the mouth ulcers were bad the first couple of weeks, but are very rare now.  I have developed a rash on my shoulders, chest, and back that resemble large acne that won't go away for several weeks, then new ones pop up.  It is starting to drive me crazy.  They itch and are noticable.  I have had horrible urinary tract and yeast infections that are just getting worse every day.  Not sure if this is from Sprycel or if it is the beginnings of Pre-menipause!!!  I am 41 yrs old and my OBGYN said that it very well could be the onset.  My skin has gotten very oily along with my hair.  All of this seems like a hormone issue to me.  If anyone has had this, please let me know.

I wish all of you the best with your switch to Sprycel.

I will have my 3-mth bcr-abl test next week and I will post my results.  My monthly CBC labs have been normal.

[hannibellemo]

Dana,

Did you by any chance post on www.newcmldrug.com when you first started Sprycel about your face feeling windburned? I can't find the post again but I don't think that poster got an answer on that site. I am experiencing that and irritated gums and soft palette - no open sores. There is no visible rash just the windburned feeling. Friday it went away and I thought it was over but it came back on Saturday and feels better again today. I am on day 10 of Sprycel.

Pat

[specialk1957]

I've been off the Sprycel for 28 days today and will be starting back up tomorrow.  My counts have recovered nicely so the doc wants me to start back up on 50 mg once a day.  I'm hoping the mouth sores stay away.  The one that I got about 25 days ago is finally healing to the point it's almost gone.  I'm really hoping it doesn't come back.  When I started Sprycel, I had headaches daily for about 10-days, but they got better with time.  I'm really hoping that "cleaning out my system" from the Gleevec and Sprycel helps me get back on track and be able to tolerate the Sprycel better this time around.  I also had a FISH test and Mutation test, last week, however I don't have the results of either yet.  I post the results once I get those.