23 replies to this topic

[TeddyB]

Hello.

I am having my 3.5month checkup this Thursday (3,5months instead of 3 months because of summer vacation), and im starting to "feel the heat", as i understand this is a kind of landmark checkup for us CML`rs.

The onc is only taking blood this time, he said he might go for a BMB on my next checkup.

So far ive been doing great on Gleevec according to the onc, but im afraid of Gleevec not doing its job on the "higher level" leukemic cells, but i guess i will find out next week. Do they usually measure bcr+abl levels on the first tests, or just the 3 and 6 month tests? Onc said they took the bcr+abl tests each time, but they werent really looked into that much until after 3 months of treatment. Was he talking about FISH or PCR?

The body seems to be handling Gleevec pretty well except from some dry skin and some minor constipation issues.

Just came back from a 2 week vacation yesterday, and Gleevec side effects have better than ever. We spent one week in the south of Norway at our summer cabin, and one week in a rented summer house in Sweden with 5 other families, which went a lot better than expected. (11 small children in one house is no joke! Luckily the house was very big) We went biking, swimming, had a few walks along the beach, and drank a few glasses of wine in the evenings after the kids were put to bed.

Anyway, are there any specific questions i should i ask on this checkup?

I understand that if results are sub optimal, i should change strategies pretty quick, and either change medication or increase dosage of Gleevec. The onc knows this of course, but i value your input as well.

My hope is that i can continue the 400mg dose of Gleevec, as side effects are starting to loosen up, and life is currently pretty good, with the exception of some mental stress now and then worrying about the disease progressing.

Just needed to vent a bit, thanks.

[Trey]

This first check-up since diagnosis is important to provide clues about how the drug is working, but only a BMB, FISH or PCR will show that.  The BMB should be done at 6 months unless a patient has high risk factors, so for you a FISH or PCR should be done at this visit, and the results will not be available until later.  But the CBC and CMP tests done so far should show if the blood has begun normalizing, and if Complete Hematological Response (CHR) has been achieved.  If the WBC has come down nicely, then that is an important first sign of some level of response.  But again, a FISH or PCR should be done at this stage to assess whether the drug is actually reducing the leukemic cell levels.

http://community.lls.org/thread/2821

[TeddyB]

Thanks again Trey.

WBC came down from 270k to normal range within 3-4 weeks of 400mg Gleevec, and after about 5-6 weeks my spleen was not palpable anymore, so i feel im off to a good start, i just hope the next chapter of my journey will be just as good.

So a PCR test measures the same as a FISH test(BCR-ABL%), but it is more sensitive, is this correct?

And what i want to see, is the percentage preferably go down from XX% at dx to 0,0XX% to get a 3 log reduction? And then of course keep that 3 log reduction after that? (Or PCRU if i am REALLY lucky)

I am of course not expecting that after just 3 months of Gleevec, but i do hope it has reduced considerably since dx.

One last question, how long does it usually take to get the results from a FISH/PCR test? I think the tests are being done at the same hospital as i draw my blood, so i should get the results pretty quick.

Usually on checkups, i come in to the hospital 1.5 hours before my onc appointment and draw blood, the onc then has the results when its time for the appointment.

[Trey]

FISH and PCR tests are labor intensive and take some time to accomplish.  Often the labs set up to run them only once per day.  The waiting time for the report can be weeks, depending on the hospital or lab.  Most of that time the report is waiting for someone to review it and send it on. 

FISH is an actual percentage of leukemic to normal WBCs.  PCR is an estimate of BCR-ABL (leukemic) genetic material compared to some other type of genetic material in the WBCs.  The comparison ratio is turned into a percentage, but it is not an actual percentage of leukemic cells like FISH.  You are correct that PCR can detect lower levels of disease than FISH, so after CCyR only PCR is useful. 

[Marnie]

Hi, Teddy. . .I always schedule my blood draws a week or two before I meet with my oncologist so that we can go over the results together.  I don't feel that it's a good use of time (and therefor money) to meet with the oncologist the same day that the PCR test is done. 

Good luck, and try not to let the stress build up before the appointment (easier said than done).  It sounds like things are going very well for you, so I have no doubt that you'll have good results to go over with your doctor.

[0vercast]

If the results are suboptimal at 3 months, don't be too quick to change anything up.  I went through this a couple months back when my 3-month FISH results came back and showed very poor results.  The plan was prior to switching drugs, I would try a double dose of Gleevec for a month to see if I could handle it, since the standand dose of Gleevec seemed to be agreeing with me, side effect-wise.  The 800mg completely kicked my butt, and it took more than a month for my body to settle back down and for the side effect to diminish.  I handle a 400mg dose very well with only some insomnia, minor constipation, and a weak appetite to complain about, but 800mg was terrible.  Think twice before you go that route.  It's tempting to start making changes at the 3 month point, but try to be patient.  After poor results at 3 months (84% FISH) my response accelerated in a big way in that 4th month, and my FISH dropped to 51%.  If I could do it over again, I would have stayed the course without any dose escalation for a full 5 or 6 months before making any rash decisions regarding dosage or drug changes.

[Susan61]

Hi Teddy:  Glad your doing well and feeling well on your Gleevec.  I am also on Gleevec now for 11 years.  I always go for my blood work at least a week and a half before my doctors appointment.  My lab has already told me not to come on a Friday because they will not even draw a PCR on a Friday so that it gets processed properly, It could sit around over the weekend at some labs.  I go on a Monday or Tuesday to get my blood drawn to be sure all is accurate when I see my Oncologist.

     Like Marnie said why pay to see the Oncologist if there is nothing to discuss if your blood tests are not there.

     When I was first diagnosed I went every 3 months for blood work and a BMB.  Once I achieved a cytogenetic response I no longer had any BMB.  I go every 3 months now for routine blood work, and then every 6 months I get the regular blood work done with a PCR test and thats when I see my Oncologist.  I just get a call at the 3 month test to let me know my results.  Every doctor has their own protocol the way they want to do things.

    Wishing you the best, and let us know how things are.

Susan

[TeddyB]

Trey: Thank you.

Marnie: I will talk to my onc about this for the future tests. I agree, no point in having the appointment if no results are present. I guess we only will get to check my CBC on Thursday then, and i will have to wait for the PCR/FISH results. I will try not to worry so much, but it can be a challenge some times. Thanks.

Overcast: Yes, i remember reading your thread about it, and im happy your response has been better If the onc thinks there is no or little chance of disease progression then i guess it cant hurt to be a bit more patient and give the drug some more time. If onc wants to increase my Gleevec dose to 800mg, i think i will try to convince him to get me on either tasigna or sprycel instead.

Susan: I will ask my Onc about how the procedure usually is with PCR/FISH testing, and we will work something out. 11 years is a long time, and im so glad the drug has worked so well for you. Ive read that you have talked to your doctor about reducing the dosage of Gleevec, i wish you the best of luck with that.

About the payment issue, the good thing about Norway is that both doctor visits and medicine are free after reaching a deductible of around 250$ pr year. (But we do pay a lot of taxes, 25% on most products, usually between 30-50% of our salary depending on how much we make) The bad thing is that you dont have to many Oncs/Hospitals to chose from as in the US, where there seems to be alot of CML specialists. If i wanted to see a CML specialist, i would probably have to get on a plane to London and pay a small fortune. Luckily the hospital im going to has the best Oncs Norway has to offer, and they do see at least 10-20 new cases of CML each year, so i feel i am in good hands.

[GerryL]

Hi Teddy,

The bad news is most of us feel nervous at testing time.

Check with your doctor how long the testing takes for PCR, in Australia it takes at least three weeks as it all gets tested in the one place (in Adelaide - which is in a different State to me). I ask for a copy to be sent to my GP and go and get a copy of the results prior to seeing my specialist, that way I know exactly what I'm facing before I see him.

Keeping my fingers crossed for you, let us know how you go.

[Lori's okay]

Hi Teddy,

Just a couple of words of empathy here.  That nervousness while waiting is so familiar!  I was on 'pins and needles' waiting for the first 3 month test.  I've just had my 6 month and the waiting was much easier.  I kept telling myself the situation would be just the same before and after the info....but it is still hard!  I hope you have some very positive distractions to keep your mind busy while you wait.

How great that you live near the best oncs in Norway!  Sure hope this goes well for you.

And, I think it is wonderfully amazing that we could be on different continents and sharing thoughts about such a profound common experience.  I am here outside Washington DC.  So very grateful for this forum! And, sending lots of kind thoughts your way!!

Lori

[TeddyB]

3 weeks, wow thats a long time, i hope it goes abit quicker here, but i guess i will find out Thursday.

Thank you for your support, i will post results when i get them

[Marnie]

Teddy. . .my PCR results used to take about 2  1/2 weeks, but now they're done locally so it only takes 1 or 2 days.  In the US, it is all dependent upon which lab your insurance company will allow.  Not sure how that works in Norway.  You might want to call your oncologist's office to find out how long it will take to get the PCR results, so that you can plan accordingly. 

If you do have your appointment without having the test results, you should ask your oncologist to call you with the PCR results so that you can go over themon the telephone.  Two very important things of note regarding PCR testing. . .blood should always be drawn early in the day and early in the week so that the sample doesn't sit over a weekend.  The blood degrades over time and will give you inaccurate results.  Secondly, be sure that the blood samples are always sent to the same lab so that the numbers can be compared.  Also, be sure to have your doctor print out a hard copy of your test results so that you can have them on file at home. 

Good luck.  Even after more than 3 years, I still get extremely stressed out as my PCR testing time approaches.  I don't think I'll ever get over that.

Marnie

[TeddyB]

Glad to hear the waiting got easier for you after 6months, i hope mine does too. I guess once we see the drugs really start to work, we can relax a little bit more. 2 small kids are usually distraction enough, but the nights are sometimes rough, cause thats when i usually start thinking more about the disease and the impact it could have on our family. Everyone wants to see their children grow up, and see what becomes of them.

Definitely good to have this forum, i found this to be the best forum for help with CML and side effects, with people from all over the world sharing their experiences

Also, when new treatments are discovered, this is usualy the first place i read about them.

Thank you for your kindness.

[TeddyB]

1 or 2 days sounds good.

I think the lab is at the same location at the hospital but in a separate building, so it should not take very long to get the test results, or at least i hope not.

I think they will be loaded with work after the holidays now, so i will ask when i get in on Thursday how it works. He can call me with the results when he gets them.

I will keep that in mind about the blood samples, thanks for the tips

[TeddyB]

6 month test coming up next week, BMB and PCR.

Except for some side effects, it has been a good time between 3 and 6 months, but i am starting to feel the nerves creeping up my back now. Oh well, nothing else to do but continue to take the pill and hope for the best.

Thanks everyone for all the support so far.

[GerryL]

Hi TeddyB

I'll be having my blood drawn in the last week of October and get the results from my GP mid November, I've dropped to 300mg so am a little nervous at this first lot of results to the dosage. Good luck with yours.

[Pin]

Hey TeddyB,

I had my 15 month test done yesterday and will get my results tomorrow - I am also nervous, always get this way! But my stress has gotten somewhat better with each test, which is a good thing. You're right, we just have to do our bit and take the pill

Cheers,

Pin.

[GerryL]

Hi Pin,

How do you get your PCR results so quickly? Mine have to get sent to Adelaide - last lot took about three or four weeks due to Easter. Keeping my fingers and toes crossed for you, which isn't easy when I get a cramp in my toes.