29 replies to this topic

[sschneck]

Just diagnosed with CML.  Does anyone recommend a good Dr in the Philly, NJ, NY area?  I want to get a second opinion for treatment etc.

[CallMeLucky]

Sorry to hear about your recent diagnosis.  It sucks, but things likely won't be as bad as they seem right now or as bad as you are imagining.  CML is highly treatable with very good odds of survival for many years (30+).

There are many good doctors in the area you asked about.  In NY, I go to Memorial Sloan Kettering Cancer Center.  I see Dr. Ellin Berman.  She is very good, specializes in CML, and is on NCCN panel that defines the treatment guidelines for CML

I'm sure others will weigh in with other names as well.

Hang in there and feel free to ask questions if you have any.

Best of luck

[amurray]

Hi, I am sorry that you have been diagnosis with CML. The C work is scary and the L is terrifying. I am a 27yo mother of two. I was diagnosised in May 2009.I have taken Gleevec and currently take Sprycel. I am not sure of Dr. in your area but you can find a CML specialist on  CML society's website. Hang in, it gets better. Be your own advocate and listen  to your body. You  were diagnosised with CML you are not CML, don't let it define you. I will say a prayer for you and may God Bless you. Good Luck    Amanda

[Susan61]

Hi:  Sorry to hear you have CML, but your off to a good start with getting a second opinion.  I had about 4 opinions before I finally  made any decisions.  I was diagnosed in 1998.  I live in N.J.  You did not say what state you lived in, but there is a good doctor at the Cancer Center in New Brunswick N.J. named Dr. Strair, or Dr. Goldberg in Hackensack Hospital.  I did my clinical trial at NY Presbyterian Hospital for the drug Gleevec which is what I still take today.

Please share a little more information with us.  There are so many of us with different types of treatments that are working for us.

    There is always somebody on here to help you or just listen to you.  We have a great bunch of caring people on here, and you can just vent or ask any questions you want. Someone will always get back to you right away.

    Welcome to our Group.  Just wish it was for a more enjoyable subject.  Hope we hear from you real soon.

Susan

[Trey]

A second opinion for CML is not a bad idea, but as long as there are no "high risk factors" detected at diagnosis, it is often a good idea to just start the Gleevec (or other drug) and see how it goes for a few months, since for most it goes well, and there is not much else that any other Onc would do differently at first.  Getting a second opinion too early will mean that the second Onc does not have much useful test data to work with.  Ask your Onc if you were diagnosed in Chronic Phase with no high risk factors.  If the answer is "yes" then waiting for some test results after taking the drug a few months might be the better approach.

Anyone diagnosed in Accelerated Phase or Blast Phase must see a true CML specialist Onc right away and only be treated by the best available CML specialist Oncs (there are very few of them).

But if you do not trust your Onc for any reason, find a new one.

[sschneck]

I live in Bethlehem, PA.  I am 43 and a mother of two, ages 16 and 12.  Before this diagnosis I thought the 16 yo daughter game me a lot of stress!  The Doc wants to put me on Sprycel.  I am going for a bone marrow biopsy next week so he can confirm things or check levels or something...its all so confusing at this point.   My family doc, whom I trust, thought I should go to Sloan or Fox Chase to get another opinion so I can see if  what the local Hematologist is telling me is the same or not...then if it is, just stay local for treatments and if not he feels the larger cancer centers are more experienced and I should go with what they say...

[Samcerly]

sent you a private msg with my doc's name.  but i live 30 minutes south of bethlehem and I go to sloan kettering.  We were not impressed with fox chase in our attempt to get an initial diagnosis.  one of the things i like at sloan is you get everything done there, they schedule your ultrasounds (for my spleen), EKG, bone marrow biopsy, etc.  They have all been very caring and competent.  Good luck in your journey!

[Samcerly]

forgot to add, i am also on sprycel. 

[sschneck]

do you go to NY or NJ for your care?  I dread the treck into the city all the time!!  Seems to be only one Leukemia doc in NJ though for Sloan Kettering.

[CallMeLucky]

I live in CT, Sloan isn't easy for me but I think it is worth it.  Initially I was with a local oncologist.  They are not a shlock operation, big name regional hospital with their own labs (they do their own PCR tests).  When I saw him he said "this is my diagnosis and this is my treatment plan, now go take it to Sloan or Yale for a second opinion."  I opted for Sloan.  After going there and seeing them in action and meeting with Dr. Berman, she asked me what I wanted to do as far as treatment.  In other words was I coming there for treatment or was I just getting her opinion and then going back to first Dr.  I asked her what she thought.  She said "too many cooks in the kitchen is not a great thing.  I can give your Dr my advice on how to treat you, but it is up to him if he chooses to listen to me or not".  I also happen to feel that being a paying customer goes a long way towards people paying more attention to your case.  She would be giving advice on my case as a courtesy, she had no obligation to do so and if something went wrong and the local Dr reached out for help, would it be for something that she would have been able to deal with sooner if I was under her direct care.  I gave it some thought, the commute was not going to be that easy, but then I thought that people travel across the world to come to Sloan and maybe my 2 hr ride in wasn't that big of a deal.  I asked her if I could use her phone to call my insurance company.  I confirmed she was a participating doctor and the hospital was in network, and then I made the decision to be treated there.  At first it was a pain because I had to go every one to two weeks.  But that only lasted a couple of months.  Now I go once every three months, which isn't a big deal.  Hopefully if things go really well, I'll be able to extend that to once every six months.

Anyway, that was my thought process and why I decided to go to Memorial Sloan.  I suspect you will likely be fine wherever you shoose, assuming you find a competent Dr.  But if you can make it work, Sloan is a very good hospital.

Best of luck.

[Samcerly]

I go to NYC.  I didn't know they had an office in NJ until i had already started in NYC.  I agree with what Call Me lucky said about 2cd opinions there, i have heard other patients say the same thing waiting in the waiting room.  I would imagine even though there is only one doc in NJ you should be fine to go there, they are still a Sloan doc and I would imagine consult with the doc's in NY, or at least you can ask about that.  i know in the beginning my doc consulted with the head of transplants (initially they were concerned i was in accelerated phase), so i would want to know they can do that if needed.  however, you won't be seeing different doc's in NY, you are assigned one and that is the one you see. my doc was out for paternity leave and i had nurse appts (she consulted with other doc's but i just saw her).  Like I said before, I am very happy with my care, but if my husband weren't driving me to my appt's I would be in NJ.  If you do decide to go into the city, let me know and i can tell you what we have figured out as far as once you get thru the lincoln tunnel, the best roads to head up to the clinic (less stop and go, a little quicker).  I can also give you tips on parking garages, we've learned which ones take a long time to get your car out of.  That is also an added expense to consider (we pay around 30-35$ each time).  Also, depending on your doc they usually have 2 days a week they have clinic days, you will have your appts on these days.  Hope that helps!

[janner25]

Hi - I live in Delaware and had my 2nd opinion at Thomas Jefferson at the Kimmel Cancer Center- with Joanne Filicko.  She was awesome...put my mind at ease and kept the door open if I needed her.  Completely agreed with my current oncs course of treatment.  If you're interested, I'll inbox her information.

[sschneck]

Trey, going with your advise for now.  Going to see another Dr. at Lehigh Valley Hospital then depending on what he says may go to Sloan for an opinion later....Thanks

[sschneck]

ok, so I went to see a new doc on Monday.  He was great!  Really friendly and explained things really well.  Told me some things about my blood results that the other doc never did!  Wants to put me on Tasigna, which doesnt react with the other meds I am taking for BP and reflux.  Sent me for an EKG first to make sure the ticker is ok.  Should be starting the meds this week or at the latest on Monday. The good news is, he said this is the earliest he has ever seen CML caught in a person.  My white count was only 22,000.  I guess that's good news considering

[Trey]

Early diagnosis is a good thing.  With such an early diagnosis, and no apparent high risk factors, a second opinion is far less important.  Certainly not any hurry.

[sschneck]

Gonna stay with this new guy for now.  He works in the Cancer Center at the hospital and was going to consult with one of the other docs there so I'm pretty comfortable with that.  Felt a weight off my shoulders after seeing this Dr. and I think thats a good sign...

[jsmiddiebrush]

sorry to have to "welcome" you onboard.....but it sounds like you're on doing as well as possible, given the situation.  Ask anything you want - someone will chime in.

your WBC was indeed low at diganosis - thats good!  My husband's WBC were at the "low" end too - 44,000 if I recall, but not as low as yours!   Just out of curiosity, how were you diagnosed?  A lot of people, including my husband, had no obvious symptons, but had rutine blood work for something else.

Keep us posted!

Joanne

[sschneck]

Just like your hubby I was having routine blood work, I see my Dr. every 4 months for High BP and he does blood work 1/year.  Just dumb luck!  (if you want to call it luck)

[JJR]

Very sorry about your new club membership, this is a hard time for you.  Keep up hope.  Ditto to other's replies about experts, the only reason an expert might be needed this early on is that they may be more savvy with prognosis, for example, they may be able to assess risk factors and utilize a scoring system like the SOKAL scoring system which factors in WBC level, spleen size, and so on.  If all goes well in getting your counts down, then you want to be able to speak with someone who is knowledgable about the NCCN guidelines.  It is never to early to familiarize yourself with treatment milestones and to find out about some of the testing that is needed to track progress.  My expert consultation shed light on the fact that older Oncs may not have the knowledge of molecular biology needed to understand the testing and results.

Best of luck,

JJR

[CallMeLucky]

Hard to frame it terms of luck.  My situation was very similar, diagnosed with pretty low counts 35000 on routine blood work during annual physical, was feeling great when i walked in the door.  Dr called and had me come in to repeat the blood work.  It jumped up around 50000 and a few days later at first hem/onc I was around 64000.  Leveled off from there, was on Gleevec a week or so later and dropped back to normal pretty quickly.

I do consider myself lucky in the sense it was caught early and so far I am doing well, MMR around 8-9 months.  Am I doing well because it was caught early?  I don't know, but the theme with cancer always seems to be that early detection is better.  I had only started going for routine physicals in the last couple of years.  Had I not gone for the physical I probably would't have found out about it until I wound up in the ER like some of the others on the forum.