24 replies to this topic

[SUE]

I was diagnosed with CML about 3 weeks ago, and started taking Gleevec.  My Onc  didn't want to see me for 4 weeks.  He said we would take a blood test by sticking my finger.  Is this usually the monitoring policy?  My impression from reading this board is that most people are monitored more closely and more frequently.

Thanks to all who are there for those of us new to and bewildered by this diagnosis.

Sue

[Susan61]

Hi Sue:  Glad you joined us.  We need some more information to help you out.  Did he do a bone marrow biopsy to get a proper diagnosis?  Let me start by saying that when I was diagnosed, it was found with a routine yearly blood test that showed elevated blood counts.  Then I had a BMB to confirm the diagnosis of CML.  You need more testing, and no I never had a finger stick to check my blood.  In the beginning I went quite often, and then it was every 3 months.

I am not going to get into a lot of detail, until we get some more details from you. 

     How did he determine you had CML to begin with, and decide to put you on Gleevec?  I am on Gleevec for 12 years already, but I went through a lot of testing etc. in the beginning.

    Can you give more information, and then we can get back to you.

Susan 61

[Mayra]

Sue, sorry to hear about your diagnosis.  I was diagnosed in Dec and my Onc drew blood every week until I reached CHR.  Then it was every two weeks and now it's between 3-4 weeks.  Never a prick on the finger to run labs.  They also check my iron and metabolic panel.

The National CML society says this:

A hematologic response (HR) is one that happens with blood counts.  For example, when diagnosed your white count may have been quite high.  A positive hematologic response would be indicated by a decrease in your white count. For practical purposes, a HR means that your blood counts have returned to the normal range. When the counts return to the normal range, it is said that you have had a COMPLETE hematological response (CHR).

At diagnosis and then every 15 days until CHR has been achieved and confirmed, then at least every 3 months or as required.

http://www.nationalc...onitoring-tests

Hope this helps!

Mayra

[SUE]

Thanks for the response and for suggesting additional info that you need.  On April 11, I found out from a regular annual blood test that my white blood count was 44.  I made an appointment with an Onc  for the following week.  He did do a bone marrow biopsy, told me to get another complete blood test,  and told me to make an appointment for two weeks from the day he did the biopsy.  At that time,  he confirmed the diagnosis of CML.   I think that the 2nd blood test showed that my wbc had gone up to 66.

He mentioned one of the newer drugs, since they worked faster.  I said that I was more comfortable with Gleevec, since it had been around the longest time and had good 5 and 10 year results.  He said that was fine.  The Onc is associated with a large hospital with a cancer center, but I see him at a small suburban office.

I've had some side effects with Gleevec---some nausea and fatigue, and a rash on my legs and arms that lasted about 6 days, and then went away.  But overall, it hasn't  been too bad.    I'm starting to calm down a bit from the shock of the diagnosis, but I  want to make sure that my monitoring schedule is appropriate.

Sue

[SUE]

Thanks for your response.  Would a finger prick not give an accurate reading.   Would it not show other things that a complete blood test would show?  From what I've read, other people have  higher wbc's at diagnosis.  Could that be why he is waiting 4 weeks?

I also take synthroid  for a thyroid problem, and my endocrinologist wants a couple tests at the end of the June to make sure that the Gleevec  is not interfering with the synthroid..

Thanks,

Sue

[mariebow]

When I was first diagnosed in jan 2012 I was going in to clinic like twice a week to test my blood, and then then every three  months, no finger pricking blood tests.

[mariebow]

They also took several  vials of my  blood to test, and I told the ladies in the lab, I afraid with all that blood taken from my arm I would anemic.

[mikefromillinois]

Hi Sue,

I'm almost at my two year CML anniversary and my memory of the first couple months isn't crystal clear.  When diagnosed my white cells were high.  I had a bone marrow biopsy right away, then I think I had "CBC's" every week or two until my numbers went down closer to the normal range.  During this time period I'm pretty sure that once a tech was having a hard time getting a blood draw and ended up pricking my finger to get a "sample".  I was told that they can "get what they need" even from that small amount of blood.  I assumed that was the CBC information: numbers of white cells. platelets, and so on.

Have a nice weekend...

Mike

[LivingWellWithCML]

When starting Gleevec, weekly bloodwork for the first 4 to 6 weeks to make sure everything stabilizes, then bloodwork every 3 months to monitor cytogenetic and molecular response (for the first ~ 2 years), then if everything is going well, testing can move to every 6 months.

All of my bloodwork is taken from my arm, and the 3 - 6 month tests are fairly extensive, so they always take several vials.

[Ray99]

Sue,

   If your doctor is going to check CBC only, finger pricking will give enough blood. 

I had CBC weekly at the first month of treatment.  I also get CMP and PCR after the first month and then every 6 week.  After reaching CCyR (PCR showing 2 log reduction or PCR less than 1% IS), CMP and PCR every three months is probably sufficient.

Ray

[Susan61]

Hi Sue:  You made things a bit more clearer, and glad he did the BMB on you.  As long as you are seeing a Oncologist who treats many cases of CML, then I would just follow with his plan of treatment.  We all get to know what normal protocol is for our treatment, and if something does not seem right then a lot of us have switched doctors We just share what we know, and what we have experienced along the way with our treatment.

     You will get a lot of good help from people in our group, who can break down things for you in a simple way to understand each step that you take.  I have had CML for almost 15 years, and I still learn something new all the time.

     The side effects your having are normal.  I constantly tell people to be sure to take their Gleevec with a full meal first.  A lot of people like to take it in the evening with dinner, and then they do not get nausea.  The fatigue is something I still deal with after all these years.  If you take your pill in the evening with dinner, and then you go to sleep within hours it could help the fatigue as your sleeping through the night anyhow.  You will find what works for you.

     Just get on here and talk or vent or ask questions anytime, because we are all going through the same thing as you.  Hope everyone's response has made you feel good about this treatable disease.

Susan

[Lizzybee]

I had blood tests every week until my counts got pretty close to normal, then every 3 weeks, then 6 weeks, and finally 3 months.  I haven't been able to stay on the every 3 months schdule consistently due to spikes in my pcr and a Tasigna break to determine whether it was the cause of some symptoms I was having last fall.  Right now, I'm on a once-a-month schedule, but can hopefully get back to quarterly soon.  I have always had blood draws from my elbow, never a finger stick. I was diagnosed 6/30/11.

Some of my onc's CML patients are monitored every 6 months, but they are patients who have been stable with MMR or better for a long time.

[Calalily]

Hi Sue,

Sorry to hear about your diagnosis, it's such as shock to each of us when it happens.I was surprised to hear about the finger prick test.I also had blood test taken from my arm every week for the first 6 weeks and now every 6 weeks as results have settled down a bit. 6months down the line I can tell you that life has settled down and i think about cml a little bit less these days. Hopefully you will do well on the Gleevec. This support group has been a fantastic place to ask questions and look for support, i'm sure you'll find that too.

Best Wishes,

Calalily

[hannibellemo]

Hi, Sue,

Sorry you had to join the club no one wants to belong to, but this is great place for support and information. I've attached a link to the NCCN Guidelines for CML diagnosis and treatment.

http://www.nccn.org/.../cml/index.html         You make have to copy and paste as the "insert link" icon is not working for me anymore.

I don't care how many patients with CML your onc has, his treatment of you seems cavalier. CML is a very serious disease and one size fits all does not necessarily fit. The guidelines give you very good ideas of the number and frequency of blood, FISH, and PCR tests you should have and how often you should have them. I don't believe a "blood stick" will work in our case. In addition to the CBC you should have metabolic panels to check kidney and liver function. Although rare, liver toxicity can occur with our TKIs, a fact I unfortunately found out first hand.

I also recommend you get copies of all your lab work.

Good luck!

Pat

[SUE]

Thanks to all for your support, suggestions and ideas.  I will be moving to another state in a couple months, and your responses have given me a much better idea of what I should be looking for, questions I should ask, etc, when I choose a new doctor. 

Sue

[Susan61]

Hi Sue:  Glad you got something out of all the responses.  Thats why this board is great.  We cannot always remember everything we would like to, and then someone else will recommend or say something and then you remember its something you should have thought of.

    You said your moving in a few months.  The blood work is so important, and anything can change from week to week.

Your paying this Oncologist, and tell him you want the complete blood work with a regular draw so you can see exactly what all your  numbers are.  You do need to watch liver and kidney functions etc.  Get a CBC and a CMP all the time.

   ALso, make sure you get copies of all your medical records to take to your new doctor when you move.  Always ask for a copy of anything that is done, and keep your own medical file.  Be sure to check on your new doctors experience before you see anyone.

Susan

[Survivinggirl52]

I have never heard of that before, just to use a finger prick? I have been recently diagnosed also, and have to go to labs-(get blood drawn) several times next month. If you are getting your meds already, then the blood work is what this is for, to make sure everything else is working correctly, and the meds are working, i'e your blood counts, etc. It actually depends on your specific situation, so that is all I can help with.

[Melanie]

I just wanted to add that it appears your Onc may be of the opinion that because the type of leukemia you have is CML, which is considered by many as the "good leukemia", since 95% of the time it can be treated and controlled with TKI drugs...that maybe he's not as concerned with monitoring you as closely.  To me that is a very scary attitude to have if that's the case. CML is a very serious disease and should be treated as such till enough test and lab work has been done to ensure your TKI is doing its job, especially in the first year after diagnosis. Following the recommended ncnn guidelines is a good start. You may want to ask your Onc why he's not following the standard protocol.  Also, as others have said get copies of all your test and labs.

Best to you,

Melanie

[Survivinggirl52]

I think you have me confused with someone else who said they haven't had an appt. in 4 weeks. That wasn't me.. My hematologist has been giving me frequent appointments. I was in my Onc's office on the 16th of this month for another blood test and bone marrow biopsy.I At that point I was still newly diagnosed. This was prior to getting my meds. Then on the 23rd he confirmed for me thru that I have CML.They wanted to make sure I had that and there were no lab errors. On the 23rd they did another blood test, and then just a couple days ago received my meds, which has to be sent and does take some time to send off the paperwork  and get approved. I am going for lab tests 3 times for June, and since I just started the meds, they are doing the lab work to see if the meds are doing their job. My Onc has been giving me frequent appointments so far. They can only tell you so much before starting meds, nothing will change until you start taking them, and they want to make sure there is enough time given for meds to get in your system before another lab test. The Onc I go to has a very good reputation, and one friend I spoke with says everyone that is seen by him raves about him. He has no discipline or otherwise in his history from what I researched.

[0vercast]

Agreed. I'm wondering how they get away with only taking the blood from a pricked finger? I've never had less than 3 vials taken during any checkup. It's more often 4.