22 replies to this topic

[xxgirl]

I'm new, and instead of creeping around and remaining silent, I decided to fight my instincts, and introduce myself.

 

I was diagnosed with CML at 33 years old, just over a year ago on 4/4/14 with a WBC of 518,000.  I had a hugely swollen spleen, and was hospitalized for a week, underwent leukapheresis, and was started on Gleevec 400mg.  I responded well to Gleevec for over 6 months, but at my oncology appointment on 2/06/2015, my bcr-abl had spiked from 6.8% (09/29/14) to 46% (1/29/15).  

 

I was switched to Sprycel about 6 weeks ago, and had blood drawn last Friday for my appointment on 4/10/15.  No results yet.

 

As far as I know my doctor has not tested me for mutations, I've never had a bmb or bma, and when I asked him what if Sprycel doesn't work well for me, he said, "Oh we'll try another TKI, there are lots of them."

 

Question:  How does one go about getting a second opinion?  Do I need one?  I am currently with a small medical group, where there are only 4 oncologists to choose from, (2 are hematologists), and all of them are colleagues.  Do I need to go out of network?  Contact my insurance company?  Has anyone else gone through this process?  

 

 

[pammartin]

I had a 2nd opinion and my insurance covered as much for the 2nd oncologist as the first.  I didn't contact my insurance company because I was prepared to pay for the 2nd opinion.

 

I would contact your insurance, usually 2nd opinion is permitted.  If you are uncomfortable with your treatment or your oncologist I would look for another. When I was searching, I asked on here about opinions on oncologists and completed research on the Internet then chose one I thought would fit my situation.  I did make sure they accepted my insurance if I chose to switch in the future. It

 

Switching isn't always easy, my former oncologist's office had me sign document stating I was aware that if I chose to leave the practice I would not be accepted back in the future.  The document assured me they would forward my records (they have to at my request, regardless) and have one phone consultation with my new oncologist.  They brought me into a conference room and explained this all to me before handing me the paper to sign.  It was almost a form of intimidation, at least I felt that way.  I was not interested in returning and did not mesh with the oncologist so I agreed and left.

 

Don't let anyone tell you there are not choices.  You have many, doctors, medications, and treatments.  And if you have questions, ask them.  If you do not receive the answers you can understand or seem vague then move forward.  Not long after I found this site someone posted to me they 'fired' their oncologist.  I can't remember who that was.  I stole that term almost immediately.  Our professionals work for us and get paid a nice chunk of change to do their job.  If you are not happy, there are many options for you to explore.  I giggled the entire way home after 'firing' my oncologist. 

 

Best of luck! 

[hannibellemo]

Welcome, xxgirl!

 

Yes, you need a second opinion and my opinion is you need a new oncologist!    Seriously! You may have to travel to see one but you live in Southern California there must be some good docs somewhere around you.

 

Your current doctors cavalier attitude about the seriousness of our disease is very concerning. There are not "alot" of TKIs out there. Yes, a BMB/A should be done at diagnosis, there is much a doctor can learn about your individual disease through those results. 

 

Let us know what town you live in and someone on here can point you in the right direction.

 

Good luck!

[Lucas]

You need a bma to ser what'S going on. A mutation analysis is a very good idea too. What's your DX phase? Good luck

[Trey]

XG,

Your Onc should have done a BMB twice.  First at diagnosis, then at the large PCR spike.  I would insist on having one done even at this late date.  The BMB provides information no other test will show.  You do not even know what Phase you were diagnosed in.  Only a BMB will provide that and other information.

 

A Kinase Mutation test would also be advisable with such a spike.  The test can show which TKI drug would work best.

 

Switching drugs was a good idea, but the Onc does not know why he chose Sprycel.  Randomly is the only reason.

 

You do not need a second opinion.  You need a second Onc to replace the current hapless one.

 

I realize insurance is an issue.  But try to find a way to ditch this guy and his friends.  Some relationships are not meant to be.

[Billie Murawski]

xg, I don't like your oncs attitude at all,you are not receiving the proper respect or treatment you deserve. CML is cancer and we are very fortunate that it is treatable but that doesn't make it less scary for us. No matter what kind of cancer we have it still has to be treated to the best of their ability and he is not doing that at all. I go to the regional cancer center in my area and it's a small facility so I'm sure all the oncs are quite friendly with each other, I have cml and a couple years ago my husband was dx with polycythemia he couldn't get in to see my onc right away but he saw someone else at the same facility who dx him and did his bmb, he was a nice doctor but I was more comfortable with mine so I switched right over to him that day. I didn't worry about what that other doc thought I did what made me feel less anxious. So please see another onc even if it has to be another one in the same practice and tell him exactly how you feel you have been treated. Also most ins cos encourage a second opinion I think (mine does) or you could even call your ins co and ask them to recommend somebody close to you.  Good Luck you will be fine but we sure don't need all these challenges. Billie

[scuba]

I'm new, and instead of creeping around and remaining silent, I decided to fight my instincts, and introduce myself.

 

I was diagnosed with CML at 33 years old, just over a year ago on 4/4/14 with a WBC of 518,000.  I had a hugely swollen spleen, and was hospitalized for a week, underwent leukapheresis, and was started on Gleevec 400mg.  I responded well to Gleevec for over 6 months, but at my oncology appointment on 2/06/2015, my bcr-abl had spiked from 6.8% (09/29/14) to 46% (1/29/15).  

 

I was switched to Sprycel about 6 weeks ago, and had blood drawn last Friday for my appointment on 4/10/15.  No results yet.

 

As far as I know my doctor has not tested me for mutations, I've never had a bmb or bma, and when I asked him what if Sprycel doesn't work well for me, he said, "Oh we'll try another TKI, there are lots of them."

 

Question:  How does one go about getting a second opinion?  Do I need one?  I am currently with a small medical group, where there are only 4 oncologists to choose from, (2 are hematologists), and all of them are colleagues.  Do I need to go out of network?  Contact my insurance company?  Has anyone else gone through this process?  

 

Follow Trey's advice ( -)(*#@_*# ..... I can't believe I'm sayin' that ..... #@(@#+!@_!@ )

[Kittywatkins]

Wow! I thought my Onc was wacky! Find another doc! I'm going on my third opinion! I'll go on my fourth or fifth if I have to. In my case I know I have chronic phase of the cml but I still need to feel comfortable with my doc and staff! I know there is one out there for me! Good luck to you!

[xxgirl]

Thanks to everyone for the advice.  I do need to be more proactive in my care, and insist on better answers to my pertinent questions.  I'm just sorry that it has taken me a year to decide to make a change.

 

I'm already commuting over an hour to see my current oncologist, so if anyone in Southern California knows of a good one for CML in the area (I'm a couple hours out of LA, probably 3 hours out of San Diego), I'd appreciate any recommendations.  

 

Thanks!

[Lucas]

hey, xxgirls, here is a list of cml specialist and there are some guys in california that can help you. if you can go to san francisco, there's doctor neil shah. good luck!

 

http://www.nationalc...cml-specialists

[Lisa Lisa]

I just did it in NY. You are entitled by insurance to get a second opinion if you state that it is for a "second opinion" to the second dr.

[BigMike]

To bad your current Onc isn't more like mine. He suggested I go to Stanford for a second opinion and worked with the people there to get them the tests and results they needed before the consult. He then followed their protocols and continues to collaborate with them on my treatment. Maybe you could find someone nearby to work with you like that if you strongly suggest it. In this digital age it is so easy to do all of this without travel if everyone cooperates.

[scuba]

To bad your current Onc isn't more like mine. He suggested I go to Stanford for a second opinion and worked with the people there to get them the tests and results they needed before the consult. He then followed their protocols and continues to collaborate with them on my treatment. Maybe you could find someone nearby to work with you like that if you strongly suggest it. In this digital age it is so easy to do all of this without travel if everyone cooperates.

 

"In this digital age it is so easy to do all of this without travel if everyone cooperates. "

 

I haven't physically visited with Dr. Cortes in years - and we both live in the same city. We communicate exclusively by email. I visit the Lab - they take blood - blood results come back - I email Dr.Cortes on the results - I suggest next steps - he agrees or disagrees - wait until next test. It's terrific. It frees him up to visit with patients who really need his hands on expertise (like stem cell transplant patients and others who have no response to anything).

[xxgirl]

XG,

Your Onc should have done a BMB twice.  First at diagnosis, then at the large PCR spike.  I would insist on having one done even at this late date.  The BMB provides information no other test will show.  You do not even know what Phase you were diagnosed in.  Only a BMB will provide that and other information.

 

A Kinase Mutation test would also be advisable with such a spike.  The test can show which TKI drug would work best.

 

Switching drugs was a good idea, but the Onc does not know why he chose Sprycel.  Randomly is the only reason.

 

You do not need a second opinion.  You need a second Onc to replace the current hapless one.

 

I realize insurance is an issue.  But try to find a way to ditch this guy and his friends.  Some relationships are not meant to be.

 

It's not like I feel like my onc is waiting for me to die, so that he can free up his 3:15, but he does tend to be very flippant with me especially when I report side effects like fatigue, nausea, or bone pain.

 

I have access to my medical tests through my insurance website, and they did test my blood to confirm PH+ CML.  I had 18% blast cells detectable in my blood at diagnosis, which, by my own deduction would put me in the accelerated phase.  Blast cells aside, I responded very quickly to treatment - my spleen regained normal size in a matter of days, and I had a full hematological response to gleevec almost within the first month (even with such a high WBC at diagnosis).

 

My oncologist wanted to switch me to Sprycel 6 months ago - without giving me any more reason than response rates tended to be slightly better on Sprycel than with Gleevec - but I resisted at that time, as I seemed to be responding well to Gleevec with manageable side-effects and with the hope that Gleevec could become generic in the foreseeable future, thus making it potentially more affordable as a life-long drug therapy that I was starting in my early 30's.  

 

Now, though, things have changed, and I'm much more concerned with meeting the response milestones that are predictive of a higher/better survival rate.  

 

I think that I'll take Scuba's approach at my appointment tomorrow, and I will "suggest the next steps" based on my lab tests, instead of letting him tell me what I am going to do, and see how he takes it.  I may be spending my weekend shopping for a new doctor.

 

Thanks everyone!

[scuba]

To: XXGIRL 

 

You go girl! (is that the phrase - I may be too old to say these things).

 

Your 'soon to be replaced' oncologist works for you (currently), not the other way around. Now granted, you hired this person based on their advertised knowledge and skill and therefore agreed to follow their recommendations. But now, you have additional knowledge and skill and you are the boss. So you suggest that you want to proceed a different way. It's a conversation. If your doctor remains arrogant or "hapless", then fire him. Be prepared for a new doctor. One who will collaborate with you and not sit on mount Olympus.

[KerriD]

Where are you in So Cal?  My Brother runs Biocept ... a cancer testing company and knows who is good and who is not in the CML field...

Let  me know...

Kerri

[Trey]

With that level of blasts at diagnosis a BMB would be very important.  Get one done.

[Lucas]

i agree with trey. you must have a BMB to check your marrow. sometimes a patient have more blasts in the marrow than in the blood (i wasn't. i had 3% in blood and 1.2% in the marrow). that's very  important. good luck!

[Gail's]

That's interesting about your blasts, Lucas. My numbers were the opposite. 3% in blood, 5% in marrow. I agree that xxgirl needs a BMB and can't believe it wasn't done already!

[Lucas]

yes, gail. i had to test on my bone marrow and both put me with 1% ( 1% in one and 1.2% in another). the funny thing is that my first cbc did not show any blasts. then i travel to another city, to a great center (where i had my bmb) and 2 in the other day it shows 3% blasts in the cbc.