14 replies to this topic

[monmon]

Hi Everyone,

I am new here. I was diagnosed in March 2017 with CML. I have been taking 400 mg of Gleevec.  Last week my doctor had me stop the Gleevec due to low platelet count and anemia. Is this a common thing? I had been told that Gleevec has to be taken 90% of the time for it to be effective, but I really don't know what that means. My WBC went from 94 down to 7 in 4 weeks. I guess that is a good thing. TIA

[chriskuo]

How low did your platelets and hemoglobin get? Many people remain on Gleevec with below normal but acceptable counts.
Have you had a FISH or BCRABL test?

It's too soon to change to another TKI but that may be a possibility down the road?

How much experience does your hematologist have with CML?

[hannibellemo]

Welcome, monmon to the club no one wants to join. It's not unusual to take a short drug break at the beginning due to low blood counts. My local onc stopped mine when my ANC went below 1 (1,000), but my Mayo onc said he wouldn't have stopped unless it went below .5. Difference in the number of patients with CML that each had treated and the docs comfort level.

 

My platelets dropped below 90 (90,000) and no one was particularly concerned about that. If they get below 50 you should probably not run with scissors  .

 

I've had CML since 2008 and my numbers still run in the low normal, sometimes dipping into the high below normal. That's my new normal, you'll find yours in a few months.

 

Good luck.

[monmon]

Thank you so much for your answers. My platelets were down to 80 when she stopped the Gleevec. They are now up to 100 and she put me back on it. I had a BCRABL test it showed 59.6. I am not sure exactly what that means. I don't see a FISH on my reports but there are a couple of things that I can't make sense of and I will ask her when I see her next. I have a hard time thinking clearly right now (Gleevec?) and I guess it will take some time for me to understand all the ins and outs of this disease.

 

I am not really sure how much experience my doctor has with CML. She is a Hematology Oncologist. I was referred to her by my HMO (Kaiser Permanente). I am not quite sure how to navigate their system as my previous HMO was bought by KP and started operating as KP in March.

 

I am so glad to have found this support group!! Soon I will understand enough to put my numbers on the bottom and hopefully have a PCRU!

[Buzzm1]

Soon I will understand enough to put my numbers on the bottom and hopefully have a PCRU!

Share your CML history

[kat73]

Monmon - Welcome!  The best thing you can do is read Trey's CML blog.  Somebody, could you put in the proper link here?

 

It sounds like your beginning tale is pretty normal.  You probably didn't need to take the Gleevec break, but I wouldn't worry about it.  A lot of us did the same thing in the early days.  The TKI's are inherently myelosuppressive, some more than others.  That means that, although most of the time your "red" numbers (RBC, Hct, Hgb) and platelets (and your whites sometimes as well - including ANC) will come back to normal (like over months), for some of us they will always be a little low.  It doesn't matter.  Many of us have been distressed by it and chased the rainbow for anemia to explain fatigue, etc, etc, only to come back to realizing we're fine and we have enough of what we need to carry on pretty normally.  

 

You do indeed sound like you're getting a good response and that, plus getting attention and help for any side effects, is where your focus should be.  I hope your onc is experienced enough with CML to help you ride things out and not discontinue or switch you off to a new med too soon.  Post us your numbers and read Trey's blog.  Then you'll know EVERYTHING

[gerry]

Can take awhile to get your head around the terminology plus the diagnosis hits you hard. I can remember trying to read everything I could get my hands on to understand it. Make sure anything you read is current, lot of scary out dated info out there.
In regard to the Gleevec the drug holidays prescribed by your doc are okay. Regularly skipping dosage isn't recommended. :-)
Keeping fingers crossed that your trend is always downwards.

[Jan0080]

Monmom, Kaiser is the absolute best HMO out there. I heard of a small HMO that forced all of their Oncology patients to see a terrible Oncologist. They got what they hoped for, most of the Cancer patients switched to a different plan saving the first plan millions. Medical care must be government regulated.

[chriskuo]

Does your hematologist work for Kaiser or are they a third party?

I would check into the doc's CML credentials and check the CML credentials of other hematologists in your area.
If Kaiser is outsourcing your care, you should make sure the doc they pick for you really has what you need.
Many people here have recounted stories of unnecessary distress at the hands of docs who are not up to speed with the latest developments in CML treatment.

[jmoorhou]

Monmon here is Trey's log,  http://treyscml.blogspot.com/ .  Remember with Gleevec if you have bad nausea or GI problems consider taking it an hour after dinner.   This seems to reduce nausea alot.   I did not have to do this until my second year.   Usually side effects go away with time, but Gleevec can be tricky.

[AllTheseYears]

Monmon:  Just had to weigh in on your topic.  We all know how scary and difficult life can be when you are first diagnosed. I remember walking out to the mailbox to get my mail soon after diagnosis thinking, "My gosh, I have CANCER! This is unreal."  I'm a long-time CML survivor on Gleevec since Day One; yet, I still vividly remember those first few months (years, really) after diagnosis.  I hope you hold steady and keep taking your TKI. Things will get better one way or another, even if you change doctors, dosage, TKI or whatever.  I've been there.  Meanwhile, I think the suggestions others gave you to get informed with current information so that you can ask good questions of your onc is absolutely necessary. This is your journey, no one else's. Ultimately, decisions are yours.  

 

A word about Gleevec:  The side effects, for me anyway, do mitigate with time.  You reach a new normal.  Don't switch course too early or too quickly without a darn good reason. 

 

I wish you the best.   

[monmon]

Thank you to everyone for all your answers. I have been reading Trey's blog (thanks for the link) a little bit at a time and trying to understand what I can.

 

My hematologist/oncologist does not work for Kaiser but is affiliated with the local hospital. Kaiser is part of the Seattle Cancer Care Alliance so if things don't go as planned, I can tap into that resource. Hopefully I will be a "typical" case and respond well to Gleevec.

 

How do you check a doctor's credentials to see how much experience they have with CML?

[scuba]

Thank you to everyone for all your answers. I have been reading Trey's blog (thanks for the link) a little bit at a time and trying to understand what I can.

 

My hematologist/oncologist does not work for Kaiser but is affiliated with the local hospital. Kaiser is part of the Seattle Cancer Care Alliance so if things don't go as planned, I can tap into that resource. Hopefully I will be a "typical" case and respond well to Gleevec.

 

How do you check a doctor's credentials to see how much experience they have with CML?

 

Ask him ... 

 

1. How many patients have you or/ are currently treating who have CML? What drugs have you prescribed/ dose?

(is he familiar with the NCCN guidelines.

2. Are you a member of the American Society of Hematologists? Do you attend the ASH conference annually? Contribute papers?

3. Are you affiliated with any major hematology research centers?

 

And final question:

 

Has he read Trey's blog.

[monmon]

Thank you Scuba. I think I will copy that and take it with me when I go to my appointment next week. I do know that she wanted to start me off on Sprycel, but Kaiser would not pay for it so therefore I am on Gleevec.

[campanula]

Hi Monmon -  I agree with Scuba's list, and would also add that you should be able to ask questions - any questions - and have them immediately and competently answered. I had a gen onc/hem when first diagnosed, and then switched to a myeloid leukemia specialist at SCCA.  The first doc followed NCCN guidelines, but said I would never be able to reduce dosage or go off Gleevec.  Period.  He also did not want to discuss any side effects I might have.  Basically, his attitude was:  be happy you're alive.  My new specialist is up to date on the latest CML research and treatment, is available at any time to talk about side effects and has already mentioned dose reduction and even possible cessation down the road.  I pay a bit more for SCCA because my insurance co.'s negotiated contract with them isn't great, but it is worth it to me to be able to discuss things with an expert.  My decision to switch doctors was slow and deliberate.  The sense of total relief and trust I have now is all the proof I need to know that I made the right move.  This forum has been so helpful in guiding me in my journey to find great healthcare.  After studying this forum and Trey's blog, you will know soon if your doctor is the right one for you.