26 replies to this topic

[Dom]

I've been on gleevec for 21 months now, and I've had great results. My pcr tests went for 7.0 at diagnosis in April 2014, to 0.03 just 18 months later. The trend was always down. These numbers are for the b2a2 transcript, and I have no numbers for the others, such as b3a2, so I assume they aren't present.

Now, suddenly, at my last test (21 months) the number rose to 0.50. This is a log jump, and there are two possibilities for it.

1. Sampling error. That is, just a meaningless blip. My oncologist says he knows many patients who are at pcru for a year or more who have a similar blip that goes away at the next test.

2. The bcr-abl gene has mutated making gleevec essentially ineffective. Of course this is the worse of the two possibilities.

I need a test to see if the mutated gene is present, which I'll do on Monday, Jan 11. I'll report back then. Right now, I'm just depressed. When does this damn thing go away? Just once, I'd like to say I'm cancer free, not 0.03, just free.

[Trey]

You had a log rise but not a loss of CCyR.  So that is still not something that would indicate a kinase mutation.  A kinase mutation test would probably not work at your low levels (below CCyR), although sometimes it can.  So it would be better to just re-do the PCR.

[simone4]

Dom, I got news today that after over 6 years of being MMR, I have lost

response to Gleevec and my PCR was 0.487.  It was 0.007 in August.

 

I had a dose reduction due to an out of the f-ing blue allergic reaction to

Gleevec.  I was doing o.k.with 200mg. and this was a surprise.

 

I have existed with this CML for 7 years and now I have to start all

over with a new drug Sprycel and go for weekly blood work and

do it all over again just like a new patient. 
Don't know at my age if it is worth it.

 

I just want to be free, too.

 

I  hope this was a mistake by your lab.

Good luck.

Simone

 

Oh yeah, my hives came back this week with a vengence.

Sorry for my rant.  

[Dom]

Thanks Trey. The test I'm getting Monday is both -- a test for the mutation, and a new pcr.

Simone, sorry to hear about your condition. Changing drugs will be difficult for me, because the other tki's have cardio side-effects, which I can't really tolerate, with my 5 stents and excessive medication for BP. Hoping it's all just a sample error.

[soundoff]

Simone sorry to hear about your rise in PCR. I assume the rise is noise on the PCR. Keep us posted. I hope all works out for the best.

Dom the second generation drugs work wonders on CML. Don't let this blip get you down. Try antihistamine for the hives they always work for me.

[Sneezy12]

Simone,
A genuine drug allergy may be very difficult to diagnose. Lowering the dose of a drug in the case of a true drug allergy usually does not diminish the severity of the reaction. Aggressive treatment with antihistamines and other allergy medications, often allows continuation of the drug in the full dose, unless of course symptoms of Anaphylaxis are present.
It would be very helpful for you to see a Board-Certified Allergist-Immunologist who specializes in drug allergy. It may not be possible to test for the Gleevec, but a program of medication may be successful.
Contact the American Academy of Allergy Asthma and Immunology for information.
Good luck, Frank

[Buzzm1]

I have existed with this CML for 7 years and now I have to start all

over with a new drug Sprycel and go for weekly blood work and

do it all over again just like a new patient. 

Don't know at my age if it is worth it.

Simone, if you have to switch to Sprycel, lobby your Onc. to be put on a reduced dosage of 50mg with the hope of going down to 20mg in the very near future.  

 

Buzz

[hannibellemo]

Simone,

 

It is worth it, but with your dose reduction and a loss of MMR (barely) but remaining in CcyR , why does your onc think this is a loss of response and not just due to dose reduction?

 

I would be more inclined to switch to Sprycel just to avoid the toxicity to Gleevec you seem to have developed.

 

Although I hated Sprycel for the first few months, I adapted, I'm sure you can, too, and I think your quality of life will increase, too.

 

Good luck! Keep us posted.

[Buzzm1]

Good Luck on the retest Dom.  

[Lucas]

I'm sorry to hear about it, dom, but what was your PCR before the 0.03. You need to follow the trend. Hope that's just a mistake from the lab. Good luck.

[simone4]

Simone,
A genuine drug allergy may be very difficult to diagnose. Lowering the dose of a drug in the case of a true drug allergy usually does not diminish the severity of the reaction. Aggressive treatment with antihistamines and other allergy medications, often allows continuation of the drug in the full dose, unless of course symptoms of Anaphylaxis are present.
It would be very helpful for you to see a Board-Certified Allergist-Immunologist who specializes in drug allergy. It may not be possible to test for the Gleevec, but a program of medication may be successful.
Contact the American Academy of Allergy Asthma and Immunology for information.
Good luck, Frank

Frank, in earlier posts I mentioned my Allergist and I was on Rx antihistamines and every other solution he

could pull out of the hat.  I ended up taking a Medrol pack which killed the hives and allowed me to stay

on the reduced dosage for two months.  Then boom the hives are back and no amount of antihist. will

keep them at bay. 

When I go off the Gleevec the hives go away within 2 weeks.  I think that is the test for drug allergy.

Thanks for your input.  Your advise is always helpful.

Simone

[simone4]

Simone,

 

It is worth it, but with your dose reduction and a loss of MMR (barely) but remaining in CcyR , why does your onc think this is a loss of response and not just due to dose reduction?

 

I would be more inclined to switch to Sprycel just to avoid the toxicity to Gleevec you seem to have developed.

 

Although I hated Sprycel for the first few months, I adapted, I'm sure you can, too, and I think your quality of life will increase, too.

 

Good luck! Keep us posted.

Pat, is this a loss of MMR?  I wasn't sure and I heard this on the phone and I can't understand too

well over the phone because I am translating in my head when I am anxious.  He may have

said this a loss of response due to dose reduction.

I see him Monday a.m. and we will go from there.

 

Thanks for your response.  I can only think about your description of your first night taking

this Sprycel and your horrible chills and sickness.

 

I feel lost.

Simone

[simone4]

Simone, if you have to switch to Sprycel, lobby your Onc. to be put on a reduced dosage of 50mg with the hope of going down to 20mg in the very near future.  

 

Buzz

Buzz, he mentioned to me that he would start with 50mg.  I just want him to start with 20mg.

Thanks always for your concern.

Simone

[gerry]

Hi Simone,

Sorry to hear what is happening, hopefully you can convince your doc to let you start at the lowest dosage and gradually raise it to a level where it works and is the tolerable.

[Trey]

is this a loss of MMR?

Yes.  Not by much.  Pat was saying you are still CCyR, which is not so bad.  But with the allergy issues a drug change would be reasonable.  No more than 50mg Sprycel.  Maybe you will even do a lot better.  You have done well on low dosage Gleevec except for the new allergies, so the change will work out well.

[hannibellemo]

Simone,

 

My first night was awful, but it was only one night - I had other issues but those also went away. Pay no attention to my experience because so many others have had just the opposite experience going from Gleevec to Sprycel!

 

Trey is right, you certainly don't need to start at 100mg like you've just been diagnosed. You are so close to MMR I have no doubt that you will get back down to undetectible in no time.

[simone4]

Yes.  Not by much.  Pat was saying you are still CCyR, which is not so bad.  But with the allergy issues a drug change would be reasonable.  No more than 50mg Sprycel.  Maybe you will even do a lot better.  You have done well on low dosage Gleevec except for the new allergies, so the change will work out well.

Thanks Trey,

I read that those in STIM trials that came of Gleevec, 39% lost MMR at 4 months. Of course, they were off Gleevec.

I was on a reduced dosage of 200mg. after a three week break. 

What is weird is the day this PCR was drawn, Dec 30, my WBC was 2.6 and Neutrophils were 1.68.

Does that make sense?

 

Simone

[simone4]

Simone,

 

My first night was awful, but it was only one night - I had other issues but those also went away. Pay no attention to my experience because so many others have had just the opposite experience going from Gleevec to Sprycel!

 

Trey is right, you certainly don't need to start at 100mg like you've just been diagnosed. You are so close to MMR I have no doubt that you will get back down to undetectible in no time.

Pat, I know you and so I pay attention to your responses to Sprycel..  I am not a trooper anymore so in my 7th year

of this crap, I just don't want more problems.  But I hope all will be well.

Thanks for your support.

Simone

[kat73]

Simone and Dom - You are both going in today for some answers, and I hope you get good ones. Please tell us when the results come back.

 

Dom - When you said, "Just once, I'd like to say I'm cancer-free, not 0.03, just free," that really stuck with me.  I've long been pondering why our unique situation as CMLers makes us so antsy and unhappy, when the rest of the cancer world - patients and doctors and researchers - can only see the wonderful positives of our treatment.  I think it lies in your statement.  We're always just ALMOST but not quite OK, feeling more or less "normal," with a guardedly optimistic but completely unconfirmed future.  The sword is over our head, the other shoe remains hanging, and - here's the kicker - some of us only feel about half as alive as we used to.  The human paradox here seems to be that the closer one is to the goal, the more one writhes and rebels and pines.  It's almost as if, for me anyway, I feel LESS grateful for "almost there."  Is a puzzlement.

 

An aside:  my mother-in-law (love her dearly) is completely confused.  I never planned on telling her, but she found out from a big mouth dental hygienist we share.  Tried to give MIL the shorthand version.  Months pass.  Was really sick for the month of November, didn't see her, went out to dinner recently and she asked how I was.  Mistake:  told her how unutterably tired I am all the time because of the med I have to take (having forgotten about the bug of November, which must have been what was on her mind).  A few days pass and I get an email:  Are you sick? meaning, do you still have that blood thing and is it serious?  I absolutely give up trying to explain CML to people - it's just too technical for laymen.  

 

Simone - You just rant away, anytime.  I've been at this about 7 years as well, and it has taken me MANY of those years to get to the point where I'm somewhat resigned to things.  (My therapist and I went around a bit about the word "acceptance.")  I feel like you, I think, in that I'm pretty much OK just poking along, as long as things stay the same - the PCR comes out fairly predictably and in the "safe" range and no new SE horrors rear up.  It feels like an exchange, a deal:  CML, I will "accept" you in my life and do what I must, but you had better darn well stay in your cage.  When that paw with the claws swipes out and gives you a scratch, or the lock begins to rattle and come apart - after all these years! - it is extremely distressing and depressing.  When I asked my onc about hearing on this forum about people doing fine at 10 years out and then suddenly losing response, he just nodded sadly.  This I do not like!  But, anyway, back to your specific worry - yes, bummer if you have to "start over" (I know exactly what you mean) BUT, I have to tell you I personally had no problems switching from G to Sprycel - no headache, nothing.  My toad eyes got much better.  And for long-term (SO FAR) I've had no joint/muscle pain, no GI troubles - only minor pleural effusions which have resulted in no treatment and no TKI stoppage, only doctor yawns. I did have some chicken skin and peeling rashes that were cyclical for about 18 months, but they have completely gone and not returned.   At my age I really hate change, and I hope I don't have to ever change from Sprycel, so I hear ya on that.  If you do change over, try to think of Sprycel as a hives killer pill!  You'll be brave, I know.  Doesn't mean you can't grumble . . .

[simone4]

Simone and Dom - You are both going in today for some answers, and I hope you get good ones. Please tell us when the results come back.

 

Dom - When you said, "Just once, I'd like to say I'm cancer-free, not 0.03, just free," that really stuck with me.  I've long been pondering why our unique situation as CMLers makes us so antsy and unhappy, when the rest of the cancer world - patients and doctors and researchers - can only see the wonderful positives of our treatment.  I think it lies in your statement.  We're always just ALMOST but not quite OK, feeling more or less "normal," with a guardedly optimistic but completely unconfirmed future.  The sword is over our head, the other shoe remains hanging, and - here's the kicker - some of us only feel about half as alive as we used to.  The human paradox here seems to be that the closer one is to the goal, the more one writhes and rebels and pines.  It's almost as if, for me anyway, I feel LESS grateful for "almost there."  Is a puzzlement.

 

An aside:  my mother-in-law (love her dearly) is completely confused.  I never planned on telling her, but she found out from a big mouth dental hygienist we share.  Tried to give MIL the shorthand version.  Months pass.  Was really sick for the month of November, didn't see her, went out to dinner recently and she asked how I was.  Mistake:  told her how unutterably tired I am all the time because of the med I have to take (having forgotten about the bug of November, which must have been what was on her mind).  A few days pass and I get an email:  Are you sick? meaning, do you still have that blood thing and is it serious?  I absolutely give up trying to explain CML to people - it's just too technical for laymen.  

 

Simone - You just rant away, anytime.  I've been at this about 7 years as well, and it has taken me MANY of those years to get to the point where I'm somewhat resigned to things.  (My therapist and I went around a bit about the word "acceptance.")  I feel like you, I think, in that I'm pretty much OK just poking along, as long as things stay the same - the PCR comes out fairly predictably and in the "safe" range and no new SE horrors rear up.  It feels like an exchange, a deal:  CML, I will "accept" you in my life and do what I must, but you had better darn well stay in your cage.  When that paw with the claws swipes out and gives you a scratch, or the lock begins to rattle and come apart - after all these years! - it is extremely distressing and depressing.  When I asked my onc about hearing on this forum about people doing fine at 10 years out and then suddenly losing response, he just nodded sadly.  This I do not like!  But, anyway, back to your specific worry - yes, bummer if you have to "start over" (I know exactly what you mean) BUT, I have to tell you I personally had no problems switching from G to Sprycel - no headache, nothing.  My toad eyes got much better.  And for long-term (SO FAR) I've had no joint/muscle pain, no GI troubles - only minor pleural effusions which have resulted in no treatment and no TKI stoppage, only doctor yawns. I did have some chicken skin and peeling rashes that were cyclical for about 18 months, but they have completely gone and not returned.   At my age I really hate change, and I hope I don't have to ever change from Sprycel, so I hear ya on that.  If you do change over, try to think of Sprycel as a hives killer pill!  You'll be brave, I know.  Doesn't mean you can't grumble . . .

Kat, thanks for reply.  Could you move and become my neighbor!  You seem to understand

so well out 7 year problem.

I saw my onc. Monday and he put me on a Medrol pack and told me to start back on Gleevec midway

into the 6 day pack.. Do this for 1 month and he will re-test.  He believes it is a lab mistake and

I hope it is.  He is patient and flexible.  He's had to listen to my darkness during this time but

said he will switch to Sprycel if the results are the same in a month.

Thanks for your encouragement.   I hope I can handle the side effects as well as you and

Pat.

Simone