13 replies to this topic

[Daisy1985]

Hey everyone!

This morning we ve just received a call from Tom s hematologist that his ABL BCR test is not as good as it should be. He did this BM test about a month ago, his bloodcounts were perfectly normal and we thought everything was going fine. But now the doctor says he will need to switch to another pills ( he s been on Gleevec since january)

I don t know so much what this test involves, but we are a bit confused since his bloodcounts were just fine.

Did someone else dealed with this too? Are the other pills better?

We are doing our best to keep up the hope

Thanx

[PhilB]

Hi Daisy,

Did the doctor give you any details of numbers on the test?  And is it a BCR-ABL test ie a PCR or did they do any more direct cell counting eg a FISH or actual cytogenetics from a biopsy?  It would be easier to help interpret if you have some numbers.

If it is a PCR, then that wouldn't normally be the most useful test to be looking at this early in treatment.  The 3 month 'target' for treatment is to have all the blood counts back in line and he's achieved that.  All the next targets are around getting the Ph+ cell percentages down.  Only once you these down does the PCR really become a useful indicator of progress so I wouldn't be panicking at this stage just because the PCR isn't dropping yet.

Having said that, the other two drugs are great drugs and are increasingly being used as the first choice instead of Glivec.  If the doctor wants to take an agressive line on switching quickly unless he sees a very rapid response to G then that isn't unreasonable.  The new drugs are much more powerful and work much faster.  There are also more drugs in development so plenty of options

I would ask your doctor what the actual number were, why he thinks G isn't working well enough and why he wants to switch.  Find out whether he thinks the G isn't working, or just that he'd like something to work faster.  And feel free to post all the details on here to be reassured as to whether your doctor is acting sensibly.

Best wishes

Phil

[wallystl]

Hello Daisy-  I'm far from an expert however I'll respond to your concerns based upon my CML journey.  First, blood counts can be good or "normal" while the leukemia cells can be "bad," two different things.  Next, I've switched treatment 4 times in 3 years.  Each time I felt emotionally devastated as though I were losing my battle with CML.  I've come to see that I've over reacted and that each new drug has brought a new promise for continued recovery.  There are great advances each year with new drugs for treatment of CML.  I'm on a trial drug now for almost 12 months and holding my own.  Please tell Tom to try and keep his head up and keep moving forward.  Much of the CML battle form me has been in between my ears....my thoughts are with you both, Wally

[Daisy1985]

Hey Phil, thanx for the explanation!

I don t know exactly what kind of test it was, the doctor called it ABL BCR, it was a bone marrow biopsy, so I guess it s a PCR. He didn t give any numbers so we are a bit in the dark.

Anyway, I do remember, when Tom started taking Gleevec, the doctor said there are some better pills on the market, but the pollicy does not allow prescibing them as a first line. He also said then, that if he sees the slightest thing going wrong he s gonna switch Tom to the new medication.

Wednesday we will hear it from the doctor, I just hope that his situation isn t worsening.

[PhilB]

Hi Daisy,

That does sound a lot like Tom's doctor had an itchy trigger finger from the word go and was going to be looking for the first excuse to switch him to one of the preferred (but more expensive hence the policy) meds.  Fingers crossed that that is all it is, but even if he genuinely isn't responding well enough to G there are lots of options still out there - as Wally is the living proof.

Good luck for Wednesday and try to get copies of the test or at least actual numbers.  That way, even if you feel you can't bother your doctor with more calls and queries if new thoughts occur to you, you will be fully armed to come and ask questions of all the CML geeks on here.

Phil

[CallMeLucky]

While it is difficult to answer without the test results, I completely agree with what Phil has said.  From what you posted it sounds like your doctor never wanted to prescribe Gleevec in the first place but had to based on policy.  It seems he was waiting for any opportunity to switch him.  Unfortunately it doesn't sound like your doctor is communicating with you very well which leaves you and you imaginations to fill in the blanks which is very bad when dealing with this type of illness.  A bone marrow PCR test at 3-4 months after starting treatment is not necessarily going to tell you what you need to know with regard to how the drug is working.  You really should have a FISH or traditional cytogenetics.  It would be odd if they didn't do that on a bone marrow asipiration sample, but different facilities do different things.  It appears some doctors are working off PCR exclusively.

You should call the doctor's office and request copies of all lab results.  You should get a folder and start to keep track of everything.

Switching drugs is not a bad thing in and of itself.  Many people are starting off on the newer drugs and bypassing Gleevec these days.

[Daisy1985]

   Tom s doctor is indeed acting very diplomatic, and now that the weekend has started, it becomes very difficult to get some extra info. Anyways, we are trying to focus on work and not think too much about it unless we have some actual numbers. But as you say, it s difficult not to let the imagination work. It was a bit like a thunder, as everything was going fine and we thought the hard times were over. I guess this CML is sort of a roller coaster .

I also think the doctor wanted to prescribe another drug, but here in Belgium, it s not possible, as it s fully paid back. You always have to start with the cheapest one. After a week of G, the bloodcounts haven t dropped at all so he was already thinking to switch, but then things got better so he said we shall wait for the BCR ABL test results. Tom thinks that he was very close to the acceleration phase, as he had a lot of symptoms: night sweats, cough, heavy heartbeats, fever and difficulties in breathing; so maybe he just needed a more powerfull drug.

Well, let us all have a nice weekend and I keep you posted as soon I ve got some news!

[Daisy1985]

Wally

thanx for you kind words, I m glad that you ve found a drug that finnally does the trick for you, keep it like that!

It s great to hear that progress is made every year in this field, it is indeed giving us a lot of hope.

As you say, a lot is going on between the ears, it is difficult for both of us to cope with this, we are ambitious and have a lot of plans for the future and we are trying to keep heads up. In my case, all those problems gave me a stomach ulcerus in the last months. But we are lucky to be surrounded by great people, family and friends and of course you guys here, that provide always a helpfull advice and information

[Tedsey]

Dear Daisy,

Until you know all the details, you cannot be sure this is reallly "bad news".  In my experince, some oncs are not gifted in the art of relating to other human beings or relaying subject matter (basically, teaching).  This could scare you.  We have such a deep desire for our doctors to heal us and show us the "right" way.  Sadly, this does not always happen.  That said, please try and get the results of this last test and previous tests if you don't have them.  If your doctor is worth his weight in salt, he will freely share information and his thoughts.  Nothing should be hidden from you.  As you stated, you and your husband have many plans for the future.  So, take control and work to make that happen (sorry, I don't mean to tell you what to do, I just want to be supportive). 

As for your husband mentioning he was close to the "accelerated phase", you need to be certain about that.  Get proof of what phase in which he was diagnosed.  I was told I was not diagnosed early, this was often said to me, so I guessed I was on the edge of "accelerated".  But it was not true, (even if it was, I was still chronic, and as I understand, chronic is chronic and nothing more).  Turns out, I was solidly chronic, and my PLT were not even that high, just my WBC.  My first onc really had no idea how to treat CML or understand a PCR value for that matter.  She would not release my test reports to me and I had to use our United States "Freedom of Information Act" to get them (and pay a lot of money for them).  As she told me, her goal was to shoot me up with chemo, "hit the leukemia hard" and give me a stem cell transplant.  Make sure this doctor knows what he is doing and gives a good reason why he says the BCR-ABL is not as good as it should be and what it "should be" (I find him saying that a little absurd).  Also, find out why he wants to switch your husband to another drug.  The goal you should be shooting for this early in treatment is a cytogenic response.  Do you know what his response has been?  If that is good and on track, (according to the NCCN CML guidelines), then things are OK. 

http://www.nccn.org/.../cml/index.html

Please write and let us know how both of you are doing.

Wishing you all the best,

Tedsey

[Daisy1985]

Thanx Tedsey for your supportive words!

I don t really know that a cytogenic response is, but I do hope to find out more on Wednesday, the next visit with the doctor. The dr gave us some printouts, but not of all the tests so far, but indeed the lack of information can make you worry sometimes.

That s a great little book u sent, very helpfull!

I wish u also all the best!

Daisy

[0vercast]

It might be a FISH test he's doing.  I saw my Onc yesterday and found out when he's referring to testing BCR-ABL, he's talking about FISH and not PCR.

[Daisy1985]

Yes, Overcast, I m also starting to think that, since the FISH test is the first test you do to monitorize response, at 3 months. So if that is not looking ok, I guess then it s understandable to change the drugs.

[Daisy1985]

Well, today we ve been to the doctor and I ve got some more information. It was actually a cytogenic test, and Tom scorred 19/20, witch is, according to the doctor a suboptimal response ( just under the line, he said).

So he switched Tom to Sprycell. It is also the first time that he s prescribing Sprycell, bcs most of his patients do good on Gleevec.

Actually we had also the option to choose Tasigna, but that has to be taken 2 times a day and it requires some lifestyle addaptations, so Tom rather preffered Sprycell 100 mg once a day.

It s a new journey, a new hope

If there are people here that also switched from Gleevec to Sprycell, I ll be glad to hear how it s going.

Daisy

[valiantchong]

the 19/20 test is FISH test, it suppose to means detection of 19 out of 20 cells are translocated or Leukemic...

Well hopefully Tom will do better on second generation drug and responsive to the drug....Have faith on the new TKI....

Scuba or Micheal did well on Sprycell.. he was in Gleevec before,

Will pray for tom....