14 replies to this topic

[Tim76]

I was diagnosed with CML in March, 2006. Went on Gleevec immediately and responded well. No real bad side effects. Had to go up to 600 mg around March, 2007 to get to PCRu. Been there for three years. Now told that I've lost my response. Latest PCR came back as "detected". Oncologist told me that I need to go on Sprycel immediately and check into BMT, since I will be on my second line of treatment. I told her that I take a calcium supplement and multivitamin at the same time as the Gleevec, been doing so for about 6 months. She said that didn't matter. From other discussions on this site, that might matter.

I have scheduled a second opinion at a major hospital for July. I'm a single father of a 16 year old girl, my wife died from colon cancer last year. I really would like to see if I can get through her college years with the oral therapies, before I would consider something like BMT. Can anyone offer some suggestions or advise. I appreciate it in advance. 

[td1961]

Tim,

Don't panic! There's a big difference between a PCR detect and needing a BMT! It sounds like your onc might not be up to speed on the secondary lines or BMT. So, I'm glad you're getting a second opinion because I think you need one! If you failed gleevec, then was it because of a suboptimal response or something else? She could have dose escalated to 800 mg/d gleevec and try that for a monitoring period to see if it has any effect? Then, if that doesn't work, there's always sprycel and tasigna. So, I don't see where she'd be telling you to start thinking BMT? That's really putting the cart before the horse! Slow down and catch your breath! And don't worry! You'll be around for your daughter.

Regards and good health,

Tracy

[Trey]

It depends on how "detectable" the PCR was -- what was the actual result?  If it was still a very low number, then that can happen and does not necessarily mean anything.  Or if the Onc changed labs, or the lab changed the equipment or chemical reagents it uses, it may not mean anything since it could be a more sensitive test.  But if the number jumped up a lot, then that would require further investigation.  First would be to re-accomplish the PCR at the same lab to see if it was a lab error. If the PCR re-do confirms a significant loss of response, then a Kinase Mutation Test may be in order.  But one step at a time.  If it were me, I would re-do the PCR before seeing a specialist since that is likely what a specialist would do, but whatever makes you comfortable.

You should not take calcium along with any drug, since it can reduce absorption.  The calcium should be taken several hours apart from the Gleevec. The multivitamins are fine with Gleevec, and taking Vitamin C along with the Gleevec may even help absorption.

Switching drugs is OK even if someone has been doing well on Gleevec.  The drug switch is a neutral issue.  And if looking into potential donors makes you feel better about it, then that is one thing; but it is way too early to jump to a conclusion about failing drug therapy without knowing more details.

[HPL]

Hi Tim,

I can't add much more than Trey, but I would definately agree that simply being detectable is not reason to go to BMT, or even consider a drug switch. Definately get a 2nd opinion and re-test with the same lab to make sure it's not a test issue. You mentioned detectable, I wonder if they are doing a quantitive PCR or just a simply yes/no. If so, I would definately get a number associated with the PCR. Also, if you're above 0.1%, then they should be able to run a mutation test.

But don't panic, the options you have are dose increase, 2nd line drugs, and even a trial in 3rd line as a possible option. I went through Gleevec and Spryel, and entered a 3rd generation trial drug. It gave me CCR in 3 months and MMR in 6 months, so there are plenty of options left for you.

Best wishes,

Hans

[Tim76]

Wow, you guys are quick. The actual numbers were:

BCR/ABL1 of b2a2 Type "detected". Reading was 3.835%. The other two results were "not detected".

My original thought was stop the calcium, check the PCR in about a month, if the numbers are still not good, go to 800mg. She said that it was a waste of time. I also said that a new lab technician drew the sample and seemed to be having a rough time ordering the test. She gave me that look like I was making excuses.

She also mentioned that of four patients diagnosed at the same time as me, I was the last one on Gleevec. She has switched everyone to Sprycel.

I've read this discussion board many times, but never joined until today. Thank you all for your quick response in putting my mind as ease.

[HPL]

I'm not an expert, but a mutation test seems to be in order. That would also help you determine which may be the better drug for you. Sprycel may be a good option, but you should base the decision on as much data as available. For example, if you got the T315I, then a trial such as Ariad would be a good option. But definately at that level I would get a mutation test.

Best wishes,

Hans

[Tim76]

I just read about Ariad on this message board the other day. It sounds promising. I'm going to e-mail my oncologist today and suggest:

1) Stop calcium (which I did).

2) Re-run PCR, I guess we could do a mutation test in conjunction.

3) Dose increase.

Thanks again

Tim

[td1961]

Tim,

Sounds like a plan. I'm not sure another 200mg/d is going to make a difference but add it to no calcium antacids and you might have a winner? A mutation test will clear the air about whether you do or do not have something that requires you to change and if so, then to what? And if she (onc) doesn't want to do it, then you might want to look for someone else who will? Above all, don't panic! You're alive! And you have someone that needs you!

Take care!

Tracy

[Trey]

That is a pretty big jump in PCR results.  So the PCR re-test and mutation test are both good ideas right away, and the switch to Sprycel now (instead of waiting) is a reasonable approach.

[Tedsey]

Just fresh from onc today.  She said that she wanted to actively do HLA typing for me.  I am still in chronic phase.  My onc let me know loud and clear that I am not headed off for BMT and I may never be.  She said she just wanted to see how many people are out there right now in the world that may match me.  Just in case, so we know how hard or easy it may be if the time comes.  I am not sure if anyone on this board has an opinion about this.  It seems logical to me since she said I am at high risk to progress (however, I may not).  Perhaps your onc just wants to see what is out there for you, but didn't communicate it well.  I have re-thought stem cell transplant.  I now look at it as a potential cure.  It is what it is, but it appears they are getting better at it all the time.  I am so sorry to hear the news about your wife.  You have had a lot to deal with.  Sending all my good vibes to you and your daughter.  She has a lot to deal with at such a tender young age.  Here hoping all the best for you.  

P.S. And as my onc told me today, there is a man alive 18 years and still kicking who does not have his CML in what she and his new onc consider "control".  His blood counts are low and he is not PCRu, but he has not progressed.  Proof some of us can hang on and well for quite a while.

[CherylLynn]

Tim

I too was switched to Sprycel this past week...I was on 800 mg of Gleevec with little side effects...I am currently experiencing a whole host of things that I never experienced with Gleevec.  My last pcr test showed a decrease in log reduction from 3.39 to 2.89 - however, I have a deletion on the chromosome 9 that is causing my Onc's some concern and they are pushing for BMT...all the Dr.s I have seen are all in agreement and now I am going into the process of having a transplant...it's not something I would recommend you do lightly and as a single parent to a teenager I would put it off for as long as I could....

Cheryl

[Tim76]

Thanks for the strong words of encouragement. I did go to a major hospital in May, 2006 to talk about a BMT. I have five healthy siblings and the oncologist joked that I should start buying them each a car for Christmas each year. I am going back to the same hospital and doctor again. When I e-mailed him early the next morning after my visit to my oncologist, he answered me in like 10 minutes and said he would love to see me again. Not more than 20 minutes later, his administrative person e-mailed me and gave me a direct number to call her and schedule an appointment.

[Susan61]

Hi Tim:  Glad you joined us here.  I am no expert like Trey with all of this, but a lot of people never reach PCRU.  So many have achieved a cytogenetic remission, and have held their numbers pretty good.  Search out some more testing, and maybe even another doctor before you think about a BMT.

I am finding out that there are so many doctors out here who have no idea how to treat CML.  I am finally seeing a new Oncologist in July, because I am not comfortable with the new one I got when my doctor retired.  I tell everyone to be their own advocate for their treatment.

I was diagnosed in 1998, and I am very upset that I have to look for a new doctor now.  The BMT was not for me. I saw 3 specialists.

Let us all know how you  make out.  You will get a lot of excellent answers on here too.

Susan 61

[Tim76]

Thanks for your encouraging words. In my family situation, I know I'm not ready for a BMT. For the last three years, I've attended a rather large LLS Conference in my area every November. Each year it grows with attendance by health care professionals, families, but mostly survivors. When we break out into small groups, based on our conditions, the experts usually tell us that there are a lot of advances on treatment of CML. Things that are being worked on that are very promising. 

[Susan61]

Hi Tim:  I wish you well in whatever it is you decide to do with regard to a BMT.  I never went any further with my plans for a BMT back in 1998 due to not having sibling match for the transplant.  I even went as far as going into the unrelated donor registry.  When I went to New York to look into the clinical trial for the Gleevec, the doctor there did not even give me a choice.  He said no BMT.  He felt I would not be a candidate for it, especially with a unrelated donor.

Just be sure to check out some other options, before you make your final decision.

    So sorry for the loss of your wife.  IT has been a rough time I am sure.  My prayers go out for you to have a successful BMT, and a full life ahead.

Susan 61