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BCR-ABL increase??


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#1 WVU_Ben

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Posted 07 November 2013 - 02:49 PM

Hi all:

I was diagnosed on 8/1/12 with CML chronic phase. WBC at dx was 314,000 and BCR-ABL was 62%. I have been on 400mg Gleevec once daily since then. WBC was back to normal on 8/23/12 and no leukemic cells in my marrow as of 3/1/13. I achieved .001 on my BCR-ABL on 6/1/13 after 10 months of treatment. However on my 8/1 bcr-abl it came back .28 and my 10/31 came back .679. My doctor says the CML may be mutating. He also mentioned we may have to discontinue the Gleevec and move to Sprycel. Can anyone offer any advice or thoughts? Very worried. Thanks....



#2 August1

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Posted 07 November 2013 - 04:22 PM

Hi Ben,

I was also diagnosed on the same day as you were (I am in VA). My WBC was 240,000 and after a year of treatment I had just reached 1% on my PCR. I was worried about response throughout the treatment as I seemed to be a little slower than many (I have P210 e13a2). I was also having some GI issues on Gleevac and based on my Onc's recommendation went off of TKI treatment for two weeks. After only two weeks my PCR shot up to 3.7% which had me really worried. I switched to Sprycel and after about 4 weeks it went all the way back down to 0.9%. I seemed to respond a lot better to Sprycel than I did to Gleevac. I have another follow up next week to know for sure.

As I understand it, all of the TKIs work with slightly different mechanisms and each works differently with various CML mutations (there are many). I know, for example, that Sprycel is much more effective for many mutations than Gleevac, Most likely Gleevac just isn't the best TKI for you at this stage in your treatment.

Given your recent PCR trend, moving to Sprycel sounds like it could be a good thing for you. Of course there are two additional drugs, Tasigna and Ponatinib, that are available as well.

You might also ask your Onc for a mutation test and cytogenetic test/flow Cytometry report just to be sure. Others on this board are very knowledgeable and should have great feedback for you.



#3 Trey

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Posted 07 November 2013 - 06:37 PM

It looks like your PCR results are reported using International Scale (IS).  If so, you are still close enough to Major Molecular Response (MMR)*, and clearly in CCyR, so no need for much worrying at this point.  But Gleevec may be losing effectiveness.  You could wait one more PCR cycle, if you wish.  But there is also nothing wrong with switching drugs at this point, or even increasing Gleevec dosage.  So you have several options available.  It is also possible that the .001% was the incorrect PCR value.  Sometimes a result can be incorrect, and we usually avoid thinking it is the low numbers due to human nature. 

There are several reasons why TKI drugs either stop working or lose some level of effectiveness.  This is most likely to happen during the first two years after starting the drugs.  Some times it is a kinase mutation, but more often it is another mechanism.  Switching drugs often provides better response.  A kinase mutation test will often be done when a kinase mutation is suspected.  But they generally only work above the CCyR threshold (which would be about 1% IS PCR or positive FISH).  So for you it is not useful.  Also, a kinase mutation will often result in a rapid loss of response, which you have not experienced. 

Overall you are still at a good level of response.  But it does require close monitoring to see which way things go from here.  You can choose any option and feel confident that it is not a poor choice due to remaining MMR. 

* Edited:  As Tedsey says below, MMR is .1% IS scale.  My previous statement was not clear, so it was modified.  Thanks, Teds.

Message was edited by: Trey Fox



#4 WVU_Ben

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Posted 07 November 2013 - 10:24 PM

Guys, thanks for your replies. Last year when I was diagnosed I was sent by ambulance the WVU Hospital in Morgantown because my wbc count was so high and my spleen was really enlarged. They thought I had AML until I had the biopsy. My onc is sending me back to the cancer center in Morgantown next Wednesday to consult. They will be doing repeat blood work in the morning before the actual appointment.

Can kinase mutation testing be done without a biopsy? My onc in Morgantown and my hometown both said I have some of the hardest bone they've ever come across. Needless to say my biopsies are brutal. Also by family missed our vacation last year because I was in the hospital for 5 days. We planned to take our son to Disney and we are supposed to leave in 3 weeks and this news is coming at a very bad time. Since my PCR has only increase .679 in 6 months is there any reason that a change in meds could wait until I return from the vacation so I don't ruin it for my family again?

Thanks......



#5 reedgirl

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Posted 08 November 2013 - 07:53 AM

Ben,

  Can your request/demand to be sedated for the biopsy? My husband has to be, he unfortunately has a sever phobia of needles, sedating him is the only way he can have a biopsy.  Sorry to hear you are having these troubles, will hope and pray you and your family are able to take that family vacation without any interferences!

Audrey



#6 mariebow

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Posted 08 November 2013 - 01:11 PM

The same here I was told that I had very thick bones and my first BMB was horribly also,I developed post traumatic syndrone so severe,that I canceled the appointment to have another one a year later,that my onc secretary said that I ccould be sedated,and I was even though,I did not need one due to my MMR status so I feel you.



#7 Trey

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Posted 08 November 2013 - 09:35 PM

Disneyworldland is healthy for the family.*  Go.  You are not in any danger that requires  drastic action.

Kinase mutation testing can be done on blood.  But it is still a waste of time unless a patient has lost CCyR.  You are still MMR from what I can tell.  So the test would be a waste of time for you.  But Disneylandworld is good for body and soul.  Go.  Delay your self-mutilation.

*Unless you get stuck in that "It's a Small World" tunnel with that inane music blaring into your skull, which would lead to insanity and thoughts of self-harm.



#8 CML2012

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Posted 11 November 2013 - 09:57 PM

I was Dx in December 2012. I was at 51% at Dx. I was at 1.69% PCR in June. I went up to 5.63% in September so my doctor switched me from gleevec to sprycel. I was on gleevec 8 months and was over the joint/bone pain.  I totally understand the stress you are feeling. I am 43 years old. My oncologist did the mutation test (yes it is just a blood test) and mine came back negative even with a 5% increase. We are not sure why the gleevec stopped working. I will have another PCR test the first week in December to see how I am responding to the sprycel.


Diagnosed CML December 2012
Gleevec 400 mg
PCR 53%, 41%, 1.69%, 5.63% (Mutation test negative) September 2013
Sprycel 100 mg
PCR 1.1%, 0.2%, 0.2%, 0.6%, .09%, .06%, PCRU June 2015, PCRU Sept 2015, PCRU Dec 2015, 0.042% Mar 2016, 0.122% April 2016, 0.19% June 2016, 0.176% July 2016, .052% Sept 2016, .031% Nov 2016
Diagnosed Basel Skin Cancer December 2012, October 2014 (All cancer removed)
Diagnosed Melanoma April 2015 (All cancer removed)

#9 WVU_Ben

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Posted 12 November 2013 - 10:33 AM

CML2012, thanks for your reply. It has been very hard to be diagnosed at 42 years old. My onc said it is rare to see in younger people. My consult with onc at WVU Hospital is tomorrow at 9:30 am. Very nervous. I don't want to tell anyone until I know what is going on. It was hard enough to tell my wife; the fear on her face was horrible. My wife and my nine year old son have been amazing for the past 14 months. I worry about how all of this is effecting them. How do you deal with the stress? I know it isn't healthy but how are you not supposed to worry if it is coming back or if the meds will fail? Thanks......



#10 WVU_Ben

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Posted 15 November 2013 - 09:22 AM

Hi all, I had my appointment on Wednesday and here is what the onc said. No protocol to take me off Gleevec. Rise in PCR doesn't necessarily mean CML is mutating or back. He did a mutation test which we'll have back in 10 days. He said the "gold standard" of tests is still a biopsy. If mutation test and biopsy are negative I'll stay on Gleevec. Neither of us want to "burn" a drug so early in my treatment if not needed. So now I get another hole in my hip on the 21st. Already dreading it. Asked to be sedated and they said no. They said they'll give me a Valium to take that morning then they'll obviously give me a local, and Ativan and Morphine by IV. So now we wait.



#11 August1

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Posted 15 November 2013 - 10:40 AM

Hi Ben,

I'm curious why you would be able to try Sprycel, and if it doesn't work for you, just go back to Gleevac? They could run another PCR prior to your BMB to see if it's necessary. Is there any protocol against that? I think Sprycel is a lot more effective for many people with CML. You and I were diagnosed on the same day last year and are virtually at the same PCR value. I moved over to Sprycel about three months ago and it seems to be working really well.



#12 WVU_Ben

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Posted 15 November 2013 - 12:42 PM

They did run a repeat PCR also on Wednesday. My onc in Wheeling never ran a 1 year BMB because I had achieved CCR in March and then PCRU on 5/31. I guess he saw no need to do a 1 year BMB since I had PCRU. They mentioned that Sprycel would probably be the next one that I get put on assuming there is no mutation if there are leukemic cells in my marrow. There isn't going to be a med change till at least 12/9 because the result of the BMB won't be back till around Thanksgiving and we are going to Disney on 11/30. I told my onc I don't want to be starting a new med with new side effects while in Disney. Did you get the dreaded Sprycel headache? How long did it last?



#13 Tedsey

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Posted 15 November 2013 - 12:48 PM

I was stuck in Small World purgatory with my 4 year old last May.  I think we rode it 3 times.  My husband flat-out refused.  But it was worth it to see the joy in my little girl's eyes.  I had to channel the time in my childhood when I found it amusing.  Recently got the song out of my head...  I came back from Disney to PCRU (pure luck).  So, I'd agree that going to see "The Mouse" cannot be bad for your health.  LOL  Anyway, I wish the same to you, or at least consistently lower numbers.

Trey, please clarify.  I was under the impression that the IS standard for  MMR is .1.  I remember I wasn't considered having a MMR at .683 or .284 (but I also was the one to inform my present onc that I achieved a MMR at IS .015 PCR--she told me I had not).  I know my numbers cannot really be compared because it is unknown where I started or the % of my PCR at dx.  So I can only go from the IS standard (now that my lab is using IS).   Were you going from WVC_Ben's PCR at dx?  I may be developing early dementia too.  Just when I thought I was on the cusp of understanding...

Teds



#14 Tedsey

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Posted 15 November 2013 - 12:50 PM

WVC_Ben,

I was also diagnosed young.  My onc at the time  couldn't help but repeat that over and over every visit (I think it  scared her because she was just a little older than I and I was her  youngest patient--so she told me).  Sure didin't make things easier with  a 1 and 3 year old that I was sure I'd never live to see grow up.  But,  anyone can get cancer at any age (too bad we didn't fall into the mean  at 68-70).  And at its most ugly, it happens to children.  I wish you  the best, and as I am so bold to do now, I feel I will see my kids grow  up.  I also had a couple of increases in a row.  Things then popped  down.  But it took me a lot longer to reach MMR than you (years).  I  switched meds (for other reasons) and have been doing well with my  numbers so far.  Please make them sedate you for the biopsy.  I don't  get the sadism involved in drilling into a person's hip and extracting  fluid under local (I've never been sedated and never knew I could be at  the time).  Of course, whoever does our BMB doesn't have to go though  the pain.  I wish you all the best. 

Tedsey



#15 mariebow

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Posted 15 November 2013 - 01:30 PM

That Ativan and morphine plus local numbing will help you a lot I believe.



#16 August1

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Posted 15 November 2013 - 03:35 PM

Hi Ben,

Good deal. I can appreciate not wanted to start a new drug just yet. I was just thinking that if you did that and could show a positive trend in your PCR prior to your vacation you might avoid the BMB. FYI, they hooked me up with some Ativan and morphine when they did my initial BMB at dx. It helped a lot. My marrow was so compressed it took a lot of effort. I think in the end the experience was harder for my wife than it was for me!

I do actually have headaches although I can't say if it's related specifically to the Sprycel as I've had them for some time. Difficult to say but I've only been on Sprycel for a few months.

Take care,



#17 CML2012

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Posted 16 November 2013 - 07:41 PM

Ben sorry for the late response.  I work full time and this week has been toooooo busy!!  I don't deal with the stress too well.  Some days are better than others.  I am the mother of a 13 year old and a 15 year old, and my husband's work schedule is worse than mine.  Everyone tells me to rest.  Sure.  This past week I worked until 6 pm one night, and 8 pm two other nights.  I still managed to get kids to basketball and manage the house.  We are too young to just stop.  My oncologist also says I am his youngest patient.  So I am not sure if they even know what to do with me at times. My parents have even encouraged me to quit work, but then I remind them the actual cost of oral chemo and how important insurance is.  I try to hold it together for my kids and husband but it has been rough at times.  Sometimes you just have to sit and cry for a moment.  My husband has not handled this well at all.  He has lost 30 pounds and not slept much in the past year.  I have not spent near enough time understanding all the terminology or researching or asking enough questions or reading this board.  I know this is probably not the answer you were hoping for but it is the unfortunate truth :-)

We have taken our children to Disney a few times and it was great.  You should do it!! We had a blast each time.

I had the dreadful headache with Sprycel but it went away after a week.  I have not had a second BMB and I really never want to have another one.  But if I do I will be OUT!!!!

I know we are close in age, Dx and treatment so please keep in touch.  I know there is a way you can email me directly if you would like but I do not know how to tell you to do that. 


Diagnosed CML December 2012
Gleevec 400 mg
PCR 53%, 41%, 1.69%, 5.63% (Mutation test negative) September 2013
Sprycel 100 mg
PCR 1.1%, 0.2%, 0.2%, 0.6%, .09%, .06%, PCRU June 2015, PCRU Sept 2015, PCRU Dec 2015, 0.042% Mar 2016, 0.122% April 2016, 0.19% June 2016, 0.176% July 2016, .052% Sept 2016, .031% Nov 2016
Diagnosed Basel Skin Cancer December 2012, October 2014 (All cancer removed)
Diagnosed Melanoma April 2015 (All cancer removed)

#18 WVU_Ben

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Posted 31 December 2013 - 01:32 PM

Sorry guys for not keeping you updated. My BMB went really well. The PA that did it administered morphine and Ativan. Not to mention she says she's done over 2,000 of them. She was really good. Results were no leukemic cells in my marrow. Doctor is keeping my on Gleevec and we'll continue to monitor PCR and BMB results until I can keep a .001. Disney was really great. Couldn't have asked for a better vacation.



#19 mariebow

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Posted 31 December 2013 - 01:38 PM

So happy for you.



#20 WVU_Ben

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Posted 31 December 2013 - 01:41 PM

Thanks.....we were all pretty nervous waiting for the results.






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