38 replies to this topic

[ritan/]

i was diagnosed on Sept. 7 with CML (confirmed on Sept. 15). i had a substantial delay in starting on gleevec related to my insurance company fooling around. eventually, novartis started providing it for free.  i've been seeing a local oncologist, who is not a specialist, but have now decided, partly based on how high of counts i have to see a CML specialist. i'm looking primarily at going to John Hopkins, but wanted to know if anyone knew of any specialists in CML in the Raleigh, NC area? i know there are none in south dakota, and my sister lives in raleigh, so i'd be able to stay with her there.

i decided i needed to see a specialist because when i was diagnosed my WBC was 320,000 (actually the first day it was over 340,000 when they did the count at the GPs office that set this trainwreck in motion) and my spleen was enlarged over 20 cm. (it was at 20 cm 2 weeks after Dx after lots of hydrea, the onc. didn't bother to measure before that). i was removed from the hydrea and after two weeks. then the (stupid) onc. left me off of everything for 2 weeks. my WBC was 57,000 when removed and two weeks later when i insisted on a blood draw because of the delay in receiving Gleevec, it was up to 88,000. i am generally uncomfortable with the guy and have actually decided that if possible i will have my GP coordinate my care once i see the specialist. don't know if this is the best idea of not, i guess i'll bounce the idea off the onc. my GP has already agreed.

[pammartin]

Hi Rita,

I have nothing to provide as far as information, my diagnosis for CML was in the early part of October, but I wanted to tell you, this site is awesome for information and support.  I am glad you found it.. There are many people here to give you credible information and because they have already traveled the road you are beginning, they have insight and suggestions I believe you cannot find anywhere else.

Welcome, I am sorry you have to be here, but because you do, you have found a good place.

Take care

Pam

[CMLSurvivor]

I would suggest finding a new Oncologiest/Hemotologiest. I would not be comfortable not having one. GPs just are not up on the latest technology and happenings with CML. As you have probably discovered, CML is a rare leukemia and having a specialist that you are comfortable with very important. I have had CML for 4 3/4 years and learn new things all the time. You will find alot of helpful and useful information here along with a sympathec ear when needed.

[pammartin]

Hi Billie!

Hope you are doing well.  I will let you know tomorrow, hope you will be a winner with the 500,000!

Pam

[Trey]

The high WBC and enlarged spleen do not show a specific need for a specialist.  We have seen much higher WBC numbers.  You should ask your current Onc whether you are in Chronic Phase CML, and if you have any high risk factors.  Those would include high blast count, high basophil count, any other chromosome mutations, etc.

The important thing is to get started on a TKI drug, and see how it goes.  A specialist will not be able to do much for you until you take the drug for a whille and see how you respond.  So unless you have significant high risk factors, you might consider delaying that until you see how the drug works.  But if you want to see a specialist, you will likely need to travel several hundred miles from Rapid City.

[pammartin]

I just adore your log in name!  it is Awesome  and inspirational.

[Marnie]

Hi, Rita. . .

I'm on my third oncologist.  You need to find someone with whom you are comfortable and that you trust.  That's a little tricky at first, when you don't know much about cml and are in the "I can't believe this is me" phase.  A GP would not be a good choice to coordinate your care, though he/she should certainly be included in your treatment plan.  Best of luck, and as time passes, things will settle down.  Were it me, I wouldn't look for an oncologist so far away.  You need a good oncologist (though not necessarily a cml specialist) that you see regularly.  You will find one. . .don't be uncomfortable about trying new docs.  You are paying them for their time and expertise.  If they don't come through, then they don't deserve your business.  You definitely want to get your money's worth out of an office visit.  Don't settle for someone who isn't good at their job.  For me, it was a matter of communication style.  I needed a doc who listened and answered my questions.  A doc who was a PARTNER in MY decisions.

Marnie

[LivingWellWithCML]

I totally agree -- you have to be comfortable with your oncologist/hematologist, because it's going to likely be a lifelong relationship.  I'm working with both a local onc who has a strong leukemia background and a CML specialist (who fortunately is only a 30 min drive from home) on my treatment, because the specialist is very capable and experienced on the big picture and my treatment path, and my local onc tends to augment my treatment with really good wellness advice regarding my weight, diet, exercise regimen, and such.  In addition, my local onc nailed the diagnosis the day I got "the call" to report to the ER.  She showed up, looked at my blood, and within 2 hours said that I was 99.9% CML chronic phase, that there were great treatments available in oral form, and that "I was going to live a long, normal, and healthy life" -- I will never forget her calming and reassuring words in a moment of total shock & disbelief.  Then she wrote me a couple of prescriptions (Hydro and Allopurinol) and told me to start knocking down that white blood cell count.  The bone marrow biopsy the following week confirmed CML chronic phase, so she earned at least some of my future business.   In addition, she managed the Hydro -> Gleevec transition perfectly; looking back, I really appreciate how knowledgeable she was, because there appear to be many onc's out there that don't really understand how to deal with CML at diagnosis, how to evaluate the phase of the disease, etc.

There are so many folks on this discussion board that know all of the ins and outs of CML, so you should bring your questions here to help evaluate potential oncologists ... knowledge is power.

[ritan/]

so, i am (as far as i can tell from searching through my records and talking to my current oncologist) in chronic stage. i believe i had 4% blasts at Dx. i'm not certain about this, as i don't have a good handle on how to read the CBC results yet.

my idea would be to got to a specialist and that person and my GP would coordinate care. there are two local hemotologists neither of whom see hemotology patients any longer, so that is not an option. i could coordinate care through the oncologist i am seeing, but i don't trust him. the only other real option is going somewhere at least as far away as Sioux Falls (5 hours) or Denver (5 hours). there are no closer options really.

[Trey]

The important thing for you to realize is that no specialist would do anything for you until they see how you respond to a TKI drug for at least 3 months.

[Marnie]

Rita. . .I have an awesome oncologist in Denver, and I have a spare room if you need a place to stay.

Marnie

[ritan/]

marnie--that's very good to know. i'll keep it in mind.

[ritan/]

i've already been told by 2 CML specialists (one of whom said they would be happy to see me if i wanted it--through the CML society panel, so i don't know specifics on who it is) that i should not be on gleevec, that i should be on Tasigna. i'm a reference library turned business owner, and so i've done a ridiculous amount of research in the past 2 months. i'm not suggesting that i know more than anyone, but i am not just acting on a whim here. 

[mcfowler33]

Rita - your story is very similar to mine.  I wasd diagnosed with wbc's at 420k last march.  Same treatment, Gleevec and Hydroxurea (for a short time) then just Gleevec.  Gleevec did ok, but not great.  Was seeing a couple oncologists that were not specialists - they were good, but not knowledgeable in CML.  So I now drive 7 hours each way to see Dr. Mauro in Portland, OR at OHSU.  Best decision I made by far.  He is good and immediately put me on Tasigna.  Unfortunately, Tasigna made my platelets and other counts take a major dive so now im on nothing.  Trying to get my counts up so I can go back on it - lots of platelet transfusions, but hoping they go up soon.  Anyway, my advice is to see a specialist right away and don't look back...

Marcus

[pammartin]

Billie, as the crow flies, it really isn't all that far.

[Lizzybee]

http://www.dukehealt.../joseph_o_moore

I've seen Joseph Moore at Duke mentioned as a CML specialist somewhere, but I don't have any personal experience with him.

My oncologist is Robert Wehbie at the Rex Cancer Center in north Raleigh. He has other CML patients, diagnosed me accurately the same day my GP got my abnormal bloodwork, and is just really on top of things. I was diagnosed June 30, did Hydrea for a few days, and started Tasigna on July 12. I am waiting for my 1st pcr results.

[Trey]

Did anyone tell you specifically why you should be on Tasigna instead of Gleevec, for your specific case?  We all know what the comparative studies show, but many still start on Gleevec and do quite well.

By all means see a specialist if you think it is important to you.  Nearly any specialist would see you if you ask, since that is what they do.  The reality is that a specialist will want to see how you do on the TKI drug before doing anything else.  Because of that you might want to consider waiting for a couple months.  Just trying to provide some practical inputs since you said the travel would be a hardship for you.