17 replies to this topic

[nelnorm]

Has anyone had their Gleevec dose reduced from 400 mg to 300 mg without losing a response???   My onc reduced me because I have swelling and rash..... I have told him that it is MUCH better and does not cause me problems.  He STILL reduced my dose.   I was diagnosed 6 months ago.   I have had only one Bone Marrow which was when initially diagnosed.  How often do you get bone marrow tests?   I go to MD Anderson in Houston which is 4 hours drive from my house and the onc there tells me I MUST have a local hematologist.  I have a very good primary care in town..... why is this necessary to have a hematologist in town.  I drive to Houston for eye exams, dental work, dermatology, etc as I lived there all my life and only retired to East Texas 4 years ago.  A 4 hour drive is not difficult for me and I would like to always be seen by the doc at MD.... just wondering what his point is in insisting that I have a local hematologist.  Anyone have any ideas????  

[mariebow]

Hi nelmorn, It is also a four hour drive to MD Anderson for me also. I have sent you a private message also.  I am on Tasigna and I also live in East Texas.

[LivingWellWithCML]

Hi,

Just my opinion -- a hematologist (or even better, a recognized CML specialist) can review the results of a bone marrow biopsy and look for any risk factors ... they are just more experienced in this area than many oncs.  However (just my opinion - again), as long as you're in chronic phase and your FISH test results are rapidly heading down toward 0% (which is a Complete Cytogenetic Response [CCyR]), and your PCR ratio is trending downward, then Gleevec is basically doing all the work and there's probably no reason to specifically seek out a specialist unless you want to.  But that's assuming that your onc is running the right tests at the right times.  Make sure you're getting a CBC/CMP, FISH, and PCR every 3 months, and once you reach 0% FISH for two consecutive tests, it's fairly common to only run CBC/CMP and PCR every 3 months.  My onc (who happens to be a hematologist) only did a bone marrow biopsy at diagnosis, and he runs all of my tests through blood draws.  I've had a very good response to Gleevec, so in theory, I could see any onc I wanted ... as long as that person will run the tests correctly and write my script.

Note that 400mg is the standard minimum dose of Gleevec for chronic phase CML.  If you're at the 6-month point of treatment, then you should have a blood draw to check FISH & PCR.  If you're trending down well on the 300mg dose, then perhaps that will work for you?  I just know that the NCCN CML guidelines state 400mg as the minimum dose (for everyone), but more oncs are starting to look at personalized dosage as well.

Hope this helps -

[Trey]

Dosage can be reduced for side effects, but some people can fight the CML adequately on lower dosage and some cannot.  So it depends on whether your test results continue to go in the right direction.  However, when an issue such as you experienced arises, it is better to take a short break from the drug altogether, then restart.  This will sometimes reset the issue.  But if the issue has resolved itself, there is no need to take a drug break now.  You probably should try to go back to 400mg if you can to ensure you fight the CML with enough firepower at first.  Lower dosages later might be OK after the CML is under control. 

Besides the BMB, you need to have FISH and/or PCR tests done every 3 months at first.  If you are not having those done, you need to insist that they be done.

MDA wants you to have a local Hem-Onc who will order the tests and prescribe the medication(s).  MDA just wants to "look over the shoulder" of your local Hem-Onc and act in a Specialist capacity in your particular case.  MDA wants to see the results of the tests when you go to Houston, not order the tests when you arrive.  Without recent test data there is not much that can be accomplished at the appointment.

CML testing info:

http://community.lls.org/docs/DOC-1273

[GerryL]

In Australia it is usually the Hematologist who treats CML. I've lowered my dosage from 400mg to 300mg with grudging approval from my doctor, but I'm not due for my PCR test until November so can't let you know what my response is yet. I was also PCRU for a year before I asked.

[nelnorm]

Trey,

My CML was accidently discovered when I went into to MDA for a post 2 year check up on prostate ca treatment and a 2 year check up on a Bosnick cyst that has been on my kidney and to which MDA has been following for 6 years.  All CT's were normal , no metastasis , etc.  BUT, the CBC showed 107,000 WBC and over 2 million platelets.  ..... total shock as I had absolutely no less energy or any other symptom and was due to leave for Tbilisi , Georgia for a temporary assignment for the next 6 months.  The prostate doc and the kidney doc said "that ain't gonna happen"..... But, the Leukemia consult said it was no problem to go ahead and work.  His first diagnosis was myelofibrosis and I was put on  Hydrea and was told to get a CBC and chemistry panel every 3 weeks .  My Bone marrow results had not come in until I was overseas and they confirmed CML instead of the myelofibrosis.    The medicine was changed.  My wife joined me in Tbilisi and brought 6 months of Gleevec 400 mg.  I FINALLY found an onc in Tbilisi. I started Gleevec on MARCH 17th and on April 12, my levels were normal , have remained normal with the exception of the RBC , Hgb  and Hct being slightly anemic but have remained a constant .   My rash was extremely bad but not uncomfortable... the local onc panicked and wanted to do a plasmaphoresis to which the MDA doctor wrote back saying that we do not do that and that he had never heard of it being done for this.  Due to an illness with my wife , I curtailed this assignment and left Tbilisi after 5 months and returned a month early to see the leukemia doc at MDA ..... all tests are done by them three hours before seeing the doc so that he has the labs in front of him.  His resident was surprised that he had not ordered a bone marrow aspiration but the doc said that it is not necessary when this other test is done of which was not ordered and he sent me back to the lab to have it done.  I do not know the results of that yet even though I spoke with his nurse yesterday and she had no idea what kind of test he was talking about. She told me to email him.  I insisted that he not drop my dosage as my rash is much much better and swelling in face has gone down.  BUT, he said it is absolutely no problem in reducing it to 300 mg as I will hold my response (may God help him to be correct) .  He said it will help my RBC's and Hgb to come back up (3.72 and 12)  and then he insists on me getting a local hematologist..... which to me would only be ordering the labs which my primary care can do or I could just drive back to Houston to have them done there.  I am really trying to figure out how I can transfer to another doctor in that clinic that would consider me a patient.  Funny, the other docs in the urology / kidney  dept have never told me to get a local doctor... I just go to them .   I go to Houston for everything , even to having my teeth cleaned as I lived there all my life until 4 years ago to Tyler.  Got any ideas how to change when the docs are all in the same clinic.  My wife wants all cancer treated at MD as she is a retired nurse and did her training in that medical center and rotated thru MD and thinks it is team work .... doc, lab, radiology, etc.   Anyway, thanks ever so much for your input. I downloaded all your blog information yesterda... all 97 pages and plan on going through them.  This site has really helped us and I appreciate all the response!!

[nelnorm]

Hey, GerryL ,

Keep me informed on how you do on the 300 and I will let you know how I do.  Thanks for your reply!

[nelnorm]

Hey, Dan!

In knowing those guidelines, sure worries me that I am being reduced.   Thanks for your input.  I plan on checking on the FISH and PCR to see if that is what MDA had forgotten to do and then sent me back to the lab for another draw.  

[nelnorm]

Hi, Mariebow,

I sent you a message .... hope you got it.  Has my phone numbers and would love to talk with you.  We are I think only 15 to 20 min from you.

[Lisal]

Hi Nelnorm,

I took 400 mg G for 1 month then was lowered to 300 mg.  I have been on 300 mg for 5 years and am undetectable.

Lisa

[spnnrmn]

Hi Nelnorm,

My answer is almost the same as Lisa's:  was at 400mg for about 2 months and was reduced to 300mg.  That was almost 3 years ago and I have been undectable for over 2 years, my latest PCR test was a month ago. 

Philip

[nelnorm]

Hi, Philip,

Boy, this is indeed encouraging news from you and Lisa.  I have been very worried about this.  How often do you get the PCR testing?

Norman

[nelnorm]

Thank you , Lisa .   Very glad to hear this news!!

[Trey]

Dosage is very much an individual issue.  Some people can do as well on 300mg as another can on 600mg.  When side effects are severe, it is often a good idea to take a short drug break rather than reduce the dosage.  But there is no single answer to that issue. 

[SunNsand]

Hi, just wanted to add my short story. About four mths. after my CML diagnosis my Onc lowered me to 300 mg. I'm three 1/2 years out now and i'm doing fine. I have had a couple of extra rough times with side effect which my Onc told me to take a two week G break both times. I know it's different for everyone and I'm not saying this would work for everyone, but I wanted you to know that sometimes it does work. Also this last time period between Onc/PCR visits is six mths.

[nelnorm]

SunNsand,

Oh, that is great news!!   The doc at MD sent me an email yesterday saying that I was 100% Leukemic cells when diagnosed and the test last week was 1% .  I am to go for labs in three months and he will do bone marrow and complete workup again in 6 months and all will be done at MD...... very happy around here this AM.   Thanks for EVERYONE'S response!!!

[Antilogical]

[momruns]

I was Diag. in Feb 2011 started on Gleevec 400,  One year later down to 300 and I have been on 200 since March of 2012 and doing fine.  I agree with Trey, the most important thing with dosage is what works for you.

Loreta