19 replies to this topic

[0vercast]

Well, it looks like it may not be working out with Gleevec.  It was a short and sometimes stormy relationship.  Way too short, if you ask me.  I'm not at all thrilled with having to roll the dice again and adjust to new meds so soon.  I recently tried an escalated 800mg dose of Gleevec for about 2 weeks after doing the standard dose for 11 weeks.  It resulted in a very suboptimal response (84% BCR-ABL after 3 months).  The double dose caused my blood counts to plummet and the side effects were very strong.  I was a little surprised at how badly the 800mg kicked my butt, considering how I handled the 400mg dose without any significant side effects to speak of after the initial adjustment period. 

It's time for a new TKI, starting in about 3 weeks after my body settles down after the recent failed dose escalation experiment.  I'm back to taking the 400mg standard dose of Gleevec for the time being.  The current plan is to switch to daily doses of 100mg of Sprycel next, unless my next FISH shows a huge decrease since the last one a couple weeks ago, which I doubt it will.  Is there any reason I should consider Tasigna instead?  Both Sprycel and Tasigna have a serious side effect attributed to them that troubles me, Pleural Effusion and QT Prolongation, respectively.

Your thoughts, opinions, and experiences would be appreciated.

Thanks, Joe

[WoofWoof]

Yo Joe- Sorry that you're having problems on Gleevec but we are fortunate to have other choices. I wouldn't worry about the QT prolongation possibility with Tasigna. As many have said, most likely it just got a bum rap during testing. I can't tell you what to do of course but I also had to get off Gleevec. I have been on Tasigna for over 1 1/2 years and although I have side effects (damn photosensitivity) at least my BCR/ABL has been a big fat 0%

[JoshLee]

Hey, I am sorry it Gleevac didn't work out. I these medicines can be tricky. Some work better for certain people than others. Every conversation that comes up about this seems to result in people saying to try Sprycel because it works differently and is more potent. I think it works on both the active and inactive forms of BCR-ABL. I don't know what the different forms mean, but I guess it works for both. Also, you want to pin down the cause of your resistance. Is it a mutation? Is it low uptake? Is it primary? Blood level issue? Seeing a specialist might be a good idea. I see you are in the Twin Cities, maybe a trip to Mayo? I am in a similar situation, where I reached CCyR, but have been plateaued for a long while. Seeing where this all takes me..

[CallMeLucky]

If I switch I would try Tasigna before Sprycel, unless I have a specific mutation that is known to work better with Sprycel.

[JoshLee]

Yeah, there is a person on the forum "jenz" who didn't have the desired response in 6 months to gleevac and she switched to tasigna and now she's below MMR.

[Lynne D]

I don't know Lucky, I tried Tasigna and it was a bit of a nightmare. I have had the best response so far on Sprycel, and just half dose at 50mg. Then again we are all different and I've heard people say they have no side effects whatsoever with Gleevec. UGH that was the worst drug out of all of them for side effects for me. I did have a rough start with Sprycel, but I think the key is riding out the storm for the first couple of months.

[0vercast]

I've been considering a trip to the Mayo because of this new development.  I'm in St. Cloud, so it's not too far away for an occasional visit (3.5 hr drive).

I'll ask my oncologist about pinning down the reason for such a poor response.  I already asked him about a mutation test, and he said that's likely, but didn't say when.  My blood goes to the Mayo for FISH and PCR testing, and some of it will be heading down there in two weeks.  I'll see if they can try to find some answers from those blood samples.

I still have a lot to learn about CML troubleshooting.

[Susan61]

Hi Joe:  I would do what you said and get the mutation testing before you try another drug, and make the trip to the Mayo Clinic or any place that specializes in CML.  The good thing is that you have choices to switch to.  I did not have that choice when I was diagnosed in 1998, but Thank God the Gleevec worked for me.

     Its hard to say if you should try the Sprycel or the Tasigna.  Its seems like they are leaning more to the Sprycel, but I understand the concern over the pulmonary edema that you could get.

    I would ask about the Ponatanib which was the ARIAD trial.  I know someone who failed everything, and  has now been in PCRU since 2010. She was one of their first patients to go into the trial when it started.

   I hope they find something out for you before switching you to any new drug.

[Sneezy12]

Insist that your Oncologist order the Mutation Test! Frank

[pamsouth]

I have been on Gleevec since 2005, my PCR WAS NEGATIVE until last year, and then it went up and down a little on the high side.  It is very important to me, that after doing some research, it was not that anything had changed in me, but the new way the Lab Company was doing it's calculation.   My labs were being shipped to another state, from IN to New Jersey, and they had changed over to the IS, plus there were some mistakes made, in that my PCR was very high maybe PCR at 48% then a week later dropped to 12 %, plus there were some other factors.  Funny all those years my FISH stayed a stable 1 % to maybe a 3 or 4 %. 

Actually I called LLS to make sure I knew how to read the lab reports.  I switched to a  new onc, and he mentioned he had another new patient, complaining of the same thing, and his labs were shipped from In to somewhere in Ga, I don't really remember.  I believe there were also people on this board complaining last year about their PCR labs, had went up, when really nothing had changed for them, it was the labs changing the way they calculated or the scale.  Kind of funny, my old onc and everyone saying how great everything was for me, until the labs changed and then the big push to change over to a new patent TKI.  I believe the drug companies put a big push on oncologist to change people like me, over to a new patent because Gleevec will expire in 2015.  It was a bit of a shock to be smooth sailing then all of a sudden everything changed.  I truly, truly, do NOT believe that I had any mutation, that the bcr/abl, or anything in me or my response had changed, only the labs.  Then I get a letter from Novartis that they will not give out co-pay assistance to anyone on Gleevec but increased the co-pay assistance to patients on Tasigna.  Now to me that says it ALL!!  It has more to do with big PHARMA!! 

However I must use caution here in that while I believe that is true for me that is not true for everyone.  Also for those who say their white cells go up when off TKI, as a warning to me.  I never had very high white cell count ever.  Mine CML is slow, chronic and stable.  So there is certainly a bit of caution here, in comparing one person's situation to another, as there are a lot of factors.  It is a very individual choice as to each persons preference.  At my age and not have any dependents I'm looking for a quality of life with low side effects and as close to normal CBC and kidney and liver function as I can get.  For me to change TKI's, unless there truly is an emergence would just be ridicules for I'm looking for.  I wouldn't even want to go on an eventure to explore a new TKI, except when or if it becomes an emergency.  There are insurance and financial things to consider.  My insurance pay very poorly and it is like a part time job to get them to pay, I will be 65 years old come Jan and I will have Medicare and my secondary.  Do I want to bankrupt my husband or I, (in less it is an emergency,) I think not.  Just think of all the financial stress that would add on to the disease and the mental stress, to me and my husband. Do I want my life to be consumed with cancer, doctors, hospitals, labs, test, I don't think so.  Now someone else there whole life may be different, age, children, job, etc.

I also think it makes a difference in age as to the potency of the drug dose.  I am in my sixties and I don't think I do as well with a higher dose or the side effects.  We took care of my elderly mother for 3 years and senior are suppose to take child doses.  I think the medical professional has a big push from drug companies to over dose and put people on to many medicines.  When I took my mom to my own primary care doctor to cut out some of her med's and lower dose, the doc said no one know how all those chemicals work together.  In fact last year my new cardio doc said the same thing. A couple of years ago my husband was put on an arthritis pill, then the dose double, then added pain, killer, neurotic, predisone.  His labs were a wreck and I had to bath, fed and dress him. Took him to multiple doctors and I decided to wean him off the med's got the doc to send him to Physcial Therapy and now he takes very little of anything and for over a years has worked 34 to 39 hours a week.  The doctors are way to swift to over medicate.  Perhaps we are wanting instant cures, when maybe some things we can live.  For example TKI are far from a cure, will I live any better or longer on a CCyR or an MMR.  How much is medical theory and how much is really factual, proven.  Are there studies on lower doses vs higher doses, I doubt it??

I have since switched over to a new specialist  that is attached to a hospital that has their own labs for FISH and PCR, my first labs their were in Mar and FISH 1.5 & PCR 7 %.  I had another lab last week but have not got the results. Also in March the onc run test for mutations and there were none, a big fat ?0-.  I don't agree with the statement that if you are not at MMR you will have mutations, I think there are a lot of other things that factor in to mutations.

I guess I am a little bit different then most, I am very happy to be at a CCyR with my FISH and I think to much is made out of the PCR as I believe there are a lot of variable and more room for errors, etc.

I would rather have my CBC, kidneys and liver, etc. close to normal, with little side effects, and a better quality of life then to worry about a MMR or PCRU.  When I put all the this on a set of scale made for me; the quality of life, & side effects, outweighs a MMR of flat ?0-.  Besides do your really live longer with a MMR or can you live as long with a CCyR and maybe a low value on the FISH or CCYR, what is the magic number.  Down the road they may even come up with a more sensitive test, but are you a better.  The only cure is a transplant. Maybe they should work on perfecting the transplant so it wouldn't be as dangers, instead of life time drugs, especially for the very young. Also I consider the fact that even if I were at PCR 0, I could still have million + BCR/ABL floating around.  So what does that tell me.  Quality of life, and few side effect outweigh MMR.  If you can get to an MMR with low dosage at few side effects I'm all for that.  Not many Onc want to do that, until they have started you out on a high dose and crash land.  Perhaps if there were more clinical trials on starting on a medium dose and soft landing we could avoid some of the suffering and perhaps life time consequences.  Who knows different strokes for different folks.  I just keep thinking I don't think there are enough trials for low dosage.

PamSouth

[CallMeLucky]

Lynn - at 50mg Sprycel I would think differently.  I would choose Tasigna over Sprycel 100mg, which is what my doctor, and most doctors from what I understand, would prescribe.  I feel like Sprycel is too strong at the higher dose and I would lean towards Tasigna.  If Sprycel at a starting dose of 50-70 mg were an option then I would probably consider that over Tasigna for meyself.

[Marnie]

Hi, Joe. . .

When I switched from Gleevec 400 to Sprycel, I took a 4 day drug break and then started at 50 mg of Sprycel for 5 days before going to full dose, 100 mg.  I think that method helped with the headache side effects that people talk about.  I had mild headaches for a couple of weeks and that was about it.  I feel a LOT better on Sprycel, though still have fatigue.  My PCR number dropped significantly after a few months on Sprycel.   I was concerned about the possibility of PE, but haven't had any issues with it (knock on wood).  My doc was very open to my suggestion of starting at 50 mg.  My new doc, is not at all excited about looking at reducing dosage. . .but I'm not far enough to even  be thinking about that anyway.

Marnie

[hannibellemo]

Hi, Joe,

I have a different view on this altogether and I think I shared this with you on an earlier post. IMHO your doctor doesn't appear to know what he/she is doing. I, too, did not have a jack rabbit start out of the gate on 400 mg. Gleevec. At 4 months I went from 98% to 72% on my FISH,  but at 8 months I dropped to 4%. What my doctor didn't do was panic and start messing with my dosage.  (I go to Mayo and they do FISH only until CCyR is reached and then they switch to PCR, also they aren't real fussy about 3 mos. vs. 4 mos. testing.)

Have you had your 2nd FISH yet? He/she needs to give the drug some time to do its work. I told you I had a heavy cancer load, 350,000WBC and 1.25 million platelets. By all means do a mutation test while you're waiting but I see no reason not to give it those 2nd three months and then see if you need to switch. Guidelines say 12-18 mos. for CCyR but there are people out there still kicking and it took them longer then that to get there!

Do you have options for another doctor? St. Cloud isn't that small; I live in North Iowa and I have options.

My two cents.

Pat

[0vercast]

You did share those slow results, and I'm considering it.  I agree with your assessment about my doc.  I'm his first patient who didn't have a great response from Gleevec right away.  I feel like he's unsure of what to do next, and he's supposedly one of the best Hem/Oncs around.  I have plenty of options, and I've looked into them.  I've ben reassured that I should stick with this guy, at least for a little while longer, and to consult a specialist if I have doubts.

I have a mutation test coming up next week along with my 4 month FISH test.  I'm going to have FISH tests done every month until I feel comfortable with my response.  It doesn't cost me anything.  After the results of the FISH and mutation tests are given to me, I'm going down to the Mayo for a consult with a specialist before making any decisions.

I didn't mention this in the first post, but this concerns me.  I emailed Dr. Talpaz last week about how I was concerned with switching TKIs so soon and I gave him the rundown about my slow results.  After stating that he could not go into detail since he is not my physician, he feels my response is "suboptimal based on ELN criteria" to the point that my "preferred option" is to switch from Gleevec, a drug he helped develop, to Sprycel or Tasigna.

[0vercast]

That was good advice.  My 4 month FISH dropped rapidly to 51%.  In just a month, it went from 84 to 51%.  Mutation test were negative, and I've been back on the standard dose for the last couple weeks. Look like we might have jumped the gun with the dose escalation after just 3 months.

[hannibellemo]

Congratulations! Here's hoping the next one is CCyR!

Pat

[chriskuo]

Pleural effusion is more common with Sprycel than Tasigna.

[ChrisC]

You've heard about plenty of options, so I'll just mention a thought that occurred to me on the basis of my experience. Starting in Oct. 2008, I was on-and-off Gleevec for seven months, with lots of side effects and not a super response (likely due to taking various lower dosages due to side effects, then a 4-week "vacation" from it). Of course, after 4 weeks off G, my blood work showed raised WBC and BCR-ABL levels, and I restarted G 400mg while waiting for my Sprycel to arrive. With a one-day break between TKIs, I then started Sprycel 100mg. Four months later I was PCRU (over 5-log reduction, no fluctuations), and remain so to this day, even after 9 months without any TKI.

Here's my point: something worked, whether it was everything together or any one single thing. The thought occurs to me that there is always the CHANCE that with enough of the TKI in your system, and if the BCR-ABL-confused mother stem cell is dividing just at the right moment, and if there is enough of the TKI there to "show her out," there might be an argument for taking the full, recommended amount of your chosen TKI, at least in the beginning. Others have had different experiences, but to my knowledge there haven't been studies focusing on these things yet.

Just sayin'. Good luck to you!

ChrisC

[TeddyB]

Glad to hear Overcast

Congratulations!