26 replies to this topic

[Furr]

I was diagnosed a little over a month ago with CML and was placed on 400 mg. of Gleevec. The Gleevec seems to be working judging by the CBC reports. I have not had a BMB, and the diagnosis test as well as I can tell was a Flow Cytometry test. I only know that because I called the insurance company to explain the huge bill since a large portion was not covered. Everything that I have read suggests that at the very least, a BMB is necessary at diagnosis for a baseline, and to check for additional chromosome disorders. The doctor says that I am PH +, but how am I to know? I am having some ill effects of the Gleevec and when mentioned, I was told to " just take one every other day". From what I have read this is wrong. If anyone has any thoughts on this, I would be glad to hear them. I will say that the Leukemia Society has been great with their support and help. Thanks.

[Sneezy12]

If the Oncologist refuses to perform a BMB, change! Regards, Frank

[NotJack?]

My thoughts. I agree with Frank, see a CML specialist.  This is a serious dx, with potent drugs, and nothing to take lightly.  You will be fine, but at least see a hired gun close to dx and 3 mo., 6 mo, 1 yr,  etc.   If your general onc won't play ball working in tandem with an expert, move on.  Get a second opinion from a recommended CML specialist (folks here can recommend someone close to you), and find a new onc that isn't afraid to work with a specialist.  My CML specialist has a great deal of respect for general oncs, they have to know about all cancers, but you want someone on your team who lives and breathes this stuff.  My specialist quickly got me a BMB and I drive to Mayo at the mentioned intervals to see him.  I have my blood work sent to him, my family Dr., the general onc, and wait for them myself at the lab.  The main thing is that you are on the TKI's,  that is BIG.  The BMB is important to have initially to have a solid dx, and a baseline that hasn't been affected by drugs, but you will still be able to follow the guidelines with your blood work.  Your specialist will probably demand a BMB.  My general onc did not want a BMB, and only wanted to watch PCR results.  Not even wanting a FISH test until the PCR was readable.  My second opinion CML expert got me on the right track.  Good luck,  Jack

[TeddyB]

Hey Furr

What kind of side effects are you experiencing? People here can probably help you out.

And take the pill each day, taking it every other day is not good enough.

As the others say, see a specialist.

Teddy

[CallMeLucky]

If your doctor said "just take one every other day", then you must find another doctor immediately.  Furthermore the doctor should be reported for malpractice, but unfortunately you can't fix stupid and you don't need to be dealing with that when you need to focus on your health.  If that is what was said do not go back, find another doctor and have your records transfered.

As far as diagnosis, would need more info on you, but if you were BCR-ABL positive then you probably have CML.  There are doctors who treat without the BMB. It is poor procedure but not as bad as telling you to take pill every other day.

[Furr]

I never saw the actual blood work that showed BCR-ABL. I asked about a BMB and was told that blood tests are so good, that now BMB's are not necessary. I mentioned goals such as cytogenetic and molecular response and it as if I was speaking another language. The only blood test results that I have seen are the CBC's and they are trending toward normal in most categories. I am weighing the options and still am not sure what to do. The Gleevec makes me ill in the afternoons, but not to the point of incapacitation. I am hoping it will get better over time.

[Trey]

There are 3 ways to detect the CML Philadelphia Chromosome, and Flow Cytometry is NOT one of them.  The 3 ways are BMB (preferred method of diagnosis for several reasons), FISH, and PCR.  Ask the Onc which was used to confirm the Philadelphia Chromosome.  Flow Cytometry cannot be used alone to diagnose CML.

Taking Gleevec or any TKI drug "every other day" is not standard procedure.  You do not appear to need to do anything except work through the side effects on standard dosage and get to a place where your body has adjusted (few months), although some side effects will remain.  The standard method for dealing with severe side effects are a drug break (week or two) or lower dosage. 

Your Onc does not know what he is doing, or at best, cannot communicate clearly.

http://community.lls.org/docs/DOC-1271

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

[Susan61]

Hi:  You need a new doctor, and make sure he treats numerous cases of CML.  There are a lot of Oncologists who are that by name only, if you know what I am saying.  You already know more than him.  Yes, you should have had a baseline BMB to start so they could see exactly what is going on.  I would definitely call some Hematologist/Oncologists in your area.  Ask how many patients does the doctor treat for CML?  You can also call a local hospital to get a list of their top doctors for Leukemia.  Some of these doctors are just learning about CML and TKI drugs.  I went through it when my Oncologist retired.  I got his replacement, and he was so new to it all.  I never went back.

     What kind of ill effects are you having from the Gleevec?  Your only on it for one month or less, and your body has to adjust to this new drug in your system.  You could have that response from any of the TKI drugs.  Find a new doctor,and let him decide what you should do, but you never skip a dose.  Good Luck and Don't Wait.  Get rid this doctor now.

[Furr]

I am definitely going to find a new doctor. From reading a lot of other peoples comments, it seems that the best way is to go to a specialist that treats only CML, and have a local oncologist/hemotologist for more regular visits and bloodwork. While I think that I have good insurance, I am already finding out that having cancer is expensive. I would like to get all of my medical records from this doctor, because as of right now all I have are three CBC's. I called the insurance company to ask what other tests were run, that's where the Flow Cytometry came from. Can I just walk in the doctor's office and request these records, or is there a protocol to follow?

[Furr]

The side effects that I am experiencing are an overall ill feeling, coupled with nausea. My eyes are puffy. This could be a combination of the Gleevec and the trouble that I have been having sleeping.

[Susan61]

HI:  I have been on Gleevec for a long time.  I find that I have to eat a full breakfast before taking the Gleevec, and then I have no nausea at all. I did however have it in the beginning I think until my body adjusted.  Whatever meal you take it with, just be sure to eat something substantial..  The puffy eyes is my worst side effect.  I wake-up every morning with the eye edema.  I get swollen eyelids and bags under my eyes.  A Ice pack takes care of it for me.  I do not like the way it looks, but I feel its the least of my worries for what Gleevec has done for me.

   Just get the new doctor, then call this doctor to tell them you need your records. You can say your leaving, or just say your going for a second opinion if you want to make it easier on yourself.  I would not care either way if I felt I was not getting proper treatment.  Some doctors offices charge for the records.  Sometimes you have to sign a release at the office when you pick them up.  All doctors are different in how they run their office.  You should have the records to take with you when you see the new doctor.  If its only lab work, you can also get copies right from the Lab without ever having to deal with this doctor again.  You can tell your new doctor what this other doctor Did Not Do For You, and that you want proper treatment.

   Always get a copy of anything you have done, everytime you go to a doctors office.  Before I leave, I ask the receptionist for a copy.  When I left my last Oncologist, I had all my copies all the way back to my first treatment in 1998, and she was surprised.  She said this is great.   I do not even have to contact the doctor your leaving.

   I hope some of this information helps you to get to the right place.

[NotJack?]

I would share with the group the area that you live in or near.  You will get suggestions for a good local onc.  I rarely see my local onc though, I go where I go because the cancer team is so good.  The NP worked in Hemo at the Mayo Clinic (with my hired gun), the head nurse who sucks my blood is painless and friendly, and the rest of the support staff is great.  The real decisions and guidance come from Mayo, with explanations, and commentary from my team.   I would call MD Anderson TX,  Mayo  AZ or FL or MN,  Eugene,  Ann Arbor,  etc. for a second opinion, and get the show on the road.   Again,  for specific Oncs there,  throw it out to the group.  I usually google top doctors in hematology for oncs in the area, to supplement my search.  Take care, Jack

[chriskuo]

There are not that many doctors that treat only CML.  If you can find a such a highly regarded specialist in your area, you should go see him.

However, if you live in or near or major metropolitan area, you should be able to find a specialist who is highly qualified, even if they are not

devoted 100% to CML.  Only if that fails should you have to go to one of the handful of major academic centers which are top-notch in CML.

[CallMeLucky]

It's not necessary to find a Dr who only treats CML and likely you would find such an individual given it is a rare illness and there would be no good reason to limit themselves.  They would certianly treat acute forms of leukemia, etc.  That is fine, the idea is that they know about CML and more importantly experience with TKI drugs.

Your side effects are typical.  Given the amount of time you have been on you will need to give it more time for your body to adjust.  The puffy eyes are par for the course, some days will be worse then others, try to cut back on salty foods.  For nausea, try taking pill with food, can also try to take right before bed so you sleep it off.  If it is bad, there are drugs to help with the nausea.  If unbearable you can go to a differnt drug, but I think you need to give it some more time before you make that jump.  Start off with these recommendations and find yourself a good Dr.  As was mentioned, tell us what area you live in and someone may be able to recommend someone.

Good luck

[Furr]

Thanks Jack. Does anyone have experience at Hollings Cancer Center at MUSC in  Charleston, SC, or in SC in general?

[NotJack?]

I am in MN, but there are a few on this list that specify CML or AML.  And one who is a top doc.  Most work as a team, so there would probably be a consult with the most experienced in CML.  I hope that this helps. You might want to wait for someone from the area to chime in.   Take care,  Jack

[NotJack?]

Oops!  Here is the link  : http://www.muschealt...hysician=Search

[Lori's okay]

Hi Furr,

I'm from Columbia, but now live in the DC area. 

It looks to me like the nearest place where research is being done on CML may be at Emory University in Atlanta.  Here's a link to a clinical trial, the doctor conducting the trial will surely know CML.

http://winshipcancer...value=Leukemias

Lots of folks on the forum find a specialist at a research center for a second opinion or to consult in case of problems in the treatment, but mostly use a local Oncologist/Hematologist who has several CML patients.  I talked with a specialist at Hopkins who recommended a very good local oncologist.  I'm glad to know the specialist is there in case things get difficult.

Good luck to you.  I hope someone from South Carolina answers you soon. 

Lori

[Susan61]

Hi Furr:  I just googled the Hospital you are referring to, and under find a doctor who is a Hematologist/Oncologist listed so many.  I would call them if nobody gets on here to recommend anyone in particular.  Just ask them to give you someone who specializes in Leukemia, then go from there to find a doctor of your choice. Once you get a name, you might have to call their office to just ask how many patients does this particular doctor treat for CML.  Sometimes you can just get information right from the hospital itself.  Hope this helps.

Susan

[Furr]

Thanks for the information 1der world and Susan. The more thinking that I do, the more I am second guessing myself. I think that I would like to go to MD Anderson in Texas. There are physicians there that show up as being in my insurance network.I think a second opinion there and then a more local doctor might be the way to go, even though it is a right good ways to travel. If anyone has any suggestions for a doctor in the Columbia SC area I would really appreciate it.