33 replies to this topic

[pammartin]

Thanks for the advice, I checked several places and unfortunately insurance coverage is sketchy at best in the eastern part of Pennsylvania, Ohio, New York and beyond.  I have very good coverage here, but when I move out of the area it falls to discouraging levels.  I will keep looking and hopefully find a team I am comfortable with soon.  Thanks again!

[pammartin]

I am sorry for the loss of your father.  I had heard West Penn may close, I was Dr Sahovic at the hospital instead of his office, they were flooded out this summer.  That reminds me I have to find out where they are for my next appointment.  Thank you for sharing your story, I believe one of my major problems with the team is because I am not there, a chart is gven to a doctor, they skim it and make suggestions.  I was told I was in accelerated stage, when in fact I am in the chronic stage, I believe this was a quick decision made without real review of my numbers.  I made a call just to ask this question after finding this site.  Also, recent med events also have me uncomfortable with the monitoring of my results, in my opinion there are certain things that could have been done differently if someone was on top of my blood work.  Right now I am having difficulty in finding doctors my insurance will cover with the same amount as they do at present, but I will continue to search for a team I am comfortable with.  Thank you again, I appreciate your input and your advice on personal experience.

Take care

[pammartin]

Billie!  You made it to FLA?  I am sooooo jealous!  Bring me back a sunset picture and a wild dolphin jumping in the ocean and I will be in heaven.  I hope you are feeling better.  That is more important.  Thanks for the offer, I have been checking out doctors your way, everything is based on insurance coverage and what area, then what they will cover, so far it is depressing how much is not covered when traveling to another area.  Have fun!!!!!!

[Lori's okay]

Hi Pam,

I'm brand new to this forum, and newly diagnosed in the Washington DC area.  I went up to Hopkins in Baltimore and saw Dr. Keith Pratz.  Cannot say enough good things about him, just wonderful.

Hope you find what you need!

Lori

[pammartin]

Hi Billie,

I am sorry you are having such a difficult time, dealing with the CML is struggle enough, but adding more to the equation can't be much fun.  There have to be some options for you out there with the blood pressure meds so they don't zombie-fi you, I would think.  The only thing I worry about is they do this because of the reaction to them and the CML meds, then what the heck do you do?  I was sleeping about 14-16 hours a day this summer, I hated it, summer is my favorite time.  The tests came back negative once again for lyme disease, so unless they are wrong, I don't have it, 'course that doesn't explain my horn growth.  They seem to be shrinking but not counting on anything till I see what happens when they remove me from antibiotic, that will be the test.  You need to get healthy and get traveling!  Nothing makes one feel better than a nice warm sunny trip to white beaches and warm sunshine especially if you have relatives living there and you don't have to choke up at the winter lodging prices!  I have had to seek out treatment in FLA before, if needed your relatives have suggestions I am sure, so get packing, Don't worry, they will find your boobs no matter where you go.....they have boob sensors, they find 'em anywhere!  Hurry up I want my envy pictures!

[lagale]

Hello hello, my mother lives in Phila and I would love to know if anyone has actually been treated by any of these doctors and who they would recommend?  My mother who was dx'd with CML, Phila chromosome, does not like U of PA Hospital, and I have heard how they are so rushed and impersonal with the patients.   Can anyone give me actual feedback on Dr. Alison Loren or Dr. Alexander Perl at PENN or Dr Mitchell Smith at Fox Chase?  I would really appreciate feedback.  Thanks v. much, Sandra

[sandimartini47]

Hi,

I also live outside of Philly and have been to see Dr. Mitchell Smith at Fox Chase.  He is nice and he only treats leukemia.  He was considering puttting me on sprycel at the time because my numbers had jumpted up.  He did more extensive tests on me than my local oncologist.  He was thorough and knew what he was talking about.  I felt a little rushed there.  Most patients seem to have a group of doctors who are treating them for other cancers but with cml, it was one doctor.  I would recommend him but remember, they do not seem to be as  concerned about cml as some of the other cancers or leukemia (not right but that is the way it is).  Good luck and please keep me posted as to your progress, sandi

[teb]

I know this is am older topic but I was hoping some one from NYC or Long Island would repond. I switched dr's from NYC to Long Island 6 months into my CML diagnosis because the travel by myself was to much. I was going in almost 3 days a  week. Can anyone recommend a oncologist for me. My new dr makes me very sad when I go to see him. He doesn't keep me informed on test results and he doesn't believe me when I tell him about my side effects. I tell him I have good days and bad and he keeps asking ifminhave always been like this and wants to put me on an antidepressant . Of course some days I get bummed out about CML I think it's only normal! He makes me feel really bad and I don't want to settle any more. I was told he was one of the best he is a researcher and he has been recognonized as a top hematologist oncologist but he doesn't have much of a bed side manner. The new Cancer Center I go to treats the patients like a number and not a person. I need to be comfortable with my dr. This is a lifetime relationship so does anyone have any recommendations ?

Thanks

[pammartin]

I cannot offer help, but best of luck finding a doctor you are comfortable with.

Pam

[CallMeLucky]

Are you willing to back to NYC or are you looking for someone in LI?  If NYC I can recommend but I don't know anyone in LI.

[teb]

I'm willing to go back to NYC

[CallMeLucky]

I sent you a private message