33 replies to this topic

[pammartin]

I am looking for  CML specialist.  I live in Eastern Pennsylvania, but am willing to travel.  I have had one recommendation for one in NYC, but when checking out the price of airfare, it would be difficult to manage constant visitation.  I do not mind driving, and cities usually do not bother me, but having traveled through NYC before, I guess I am too old to learn how to drive like a New Yorker.  Thanks

[Susan61]

Hi Pam:  I am petrified to fly.  Have never been on a airplane, and have no intention of being on one.  When I was in the clinical trial in NY, my husband took me back and forth by train.  Right into Penn Station, then we took a taxi over to the doctors office.  Then from their we used to walk or take a taxi over to the hospital.  The train was a very pleasant ride into the city.  My grandparents lived in Pa., and when I was little we would go by train into Altoona to go visit them.  You said your in Pittsburgh.  If you chose N.Y. you could check out train travel.

Susan

[pammartin]

Susan,

I never thought of the train, my brother in law has problems with flying believe it or not he has the same name as a noted terrorist, so if he flies, he honestly has to jump through hoops and serious interrigation before flying.  When he visits he takes the train to Altoona.   I am about 2 hours north west of Pitt. but same distance from Altoona.  Thanks for the reminder, I will look into trains as a possible option.  I don't like to fly, bit of a control freak, so hard to let someone else drive/fly, but I sure love the convenience!  I used to get on a plane with my son from Cleveland to Phoenix (4 Hours) for visits with his father , have an hour lay over and then get on another plane and return to Cleveland.  Including the 2 hour each way to Cleveland, it was about a 12 hour day without stopping, with at least eight hours in the air if I could find reasonable non-stop flights. A week later I did it all again to bring him home.  I Was elated when my ex moved to Columbus, Ohio; we meet halfway, only four hours round trip!

[WoofWoof]

Pam- Sorry I can't help you with a Dr. selection but I gotta ask; If you live in Esatern PA, why would you fly to New York? Can't be but an hour or two car ride.

[pammartin]

Duh on me!  I  was thinking about NYC being in the eastern region, and that is where my brain stopped.  I actually live in western PA, about 75 miles from the PA/Ohio border.  Can't blame that one on CML,  was brain freeze.

[Trey]

Are you using the University of Pittsburgh Hillman Center?

http://www.upmccance...om/portal_hema/

University of Pennsylvania has some of the best CML specialists in PA:

http://penn-medicine...ukemia-cml.html

[pammartin]

Thank you! I have requested an appointment and the Philly one is only about six hours away from home.  I am currently at West Penn Hospital,, Pittsburgh with Dr. Savohic.  I did discover something today, the local oncologist is only in office every other month.  He spends the off months at his home in Florida.  Even though he is following Pittsburgh's treatment plan, he is not accessible for half of the year.

[pammartin]

Hi Billie,

Thanks for the info, I had forgotten about Erie, although I did look into Cleveland Clinic.  You have my complete sympathy, colonoscopy is a four letter word a few times over.  I hope you can get some rest tonight!

Take care

[reedgirl]

Hi Pam,

  My husband was diagnosed in July of 2010.  He had blood work done because of symptoms I knew were not good, and had thought could be a result of some kind of leukemia.  His Primary Care dr referred us to our local cancer center, we live near Kittanning Pa, they referred us immediately to a dr at West Penn, Dr Rosetti.  Dr Rosetti admitted him to West Penn Hospital, of course that was before they closed, without seeing him, just based on his lab work.  He spent a week in the hospital mostly waiting for the bmb results which took another month to get complete results on.  I knew of a couple other patients Dr Rosetti treated and had great success so we felt that Greg had an excellent dr and would be getting excellent care.  My feelings started to change just a bit when I couldn't get solid concrete answers about his bone marrow biopsy.  He had some additional abnormalities and I felt the dr was not being aggressive enough with care. I started doing more research, contacted Dr Talpaz at the University of Michigan. I first spoke with his secretary who requested I fax a copy of his bone marrow biopsy results then followed up with an email to the dr.  He emailed me that same night asking me to call him.  We now travel every three months to see him at the University of Michigan, Ann Arbor.  Greg is finally on Sprycel which has thankfully put him in remission.

   My suggestion to you is definitely get a copy of your bone marrow biopsy results as well as all lab work you have done.  Never settle with just one opinion of your treatment or diagnosis.  I would check into the dr Trey posted as well as maybe checking into Dr Talpaz.  Dr Talpaz calls all the shots with Greg, we were following up with Dr Rosetti, but have stopped since Feb.  We now plan to follow up with our PCP, who gets all info from Dr Talpaz.  If you have a PCP who is willing to work with your cancer specialist I would recommend going that route.  I am not comfortable with West Penn closing their cancer center and moving it to AGH.  I have bad experiences with AGH and do not intend to have my husband as a patient there.

  Good luck to you and keep us posted!

Audrey

[pammartin]

Thank you for your reply.  I am very glad your husband is on the Sprycel and it is working well.  Sounds like you both have went through some of the same confusion with testing that I am experiencing.  I am very glad I found this site, it has provided me with great support, but also important information.  It is a shame, but we cannot blindly trust health care providers, I guess perhaps we never could, but the idea with the home town doctor used to be present.  I had to stop and think a while this morning, although I used to travel quite a bit and driving is not a problem for me, I think I forgot how far three or four hours can get you as far as reaching treatment.  I also tend to look south, (perhaps it is because I know what winters are like further north) when thinking of travel.  Another member reminded me about Erie, Buffalo, and a few others places that are within 4 hours or much less I wasn't thinking about.

After learning yesterday the local oncologist is only here six months out of the year, I know he will be replaced, this may sound harsh, but it is difficult for me to wrap my brain around the dedication when every other month he is gone.  I admit it is a great lifestyle, but because he has already stated he is just going to follow the leads treatment his involvement would be minimal anyway.  I have heard from so many people to find doctors you are comfortable with, not ones you have to settle for.  I it good advice for many reasons, and we have clashed several times already due to unanswered questions, my continuing to ask questions about bloodwork and platelets, and a few other things.

Today I am going to try not to become annoyed with incorrect answers when it comes to test results, the idea the medication I am taking makes me feel worse than if I take nothing, and enjoy what little bit of sunshine is left before we head into another week of rain (yuk).  I hope you and your husband have a great day also!

Pam

[tranier]

Once you get a copy of the results you could send them to Cleve Clinic for 2nd opinion...they do 2nd opinions electronically....I know the fear is that if a CML specialist is also on the transplant team, they always go there for treatment...let me assure you that is not the case at the clinic,,,they will try everything with transplant a last resort...

[grannyd]

I agree with Trainer!!! I go to the Clev Clinic & really like my specialists!!!! She calls me & e-mails me everything!! Very understanding, no rush thru appointments, answers any questions & always tells me to call or e-mail her ANYTIME!!! I have been on tasigna since Feb. 1st this year and have been in CMR since July. Just had my PCR done there & still doing great!! She wants me to have another BMB, just wants to make sure all is ok & nothing more, I questioned her to death as to WHY another BMB, she said that is her protocol, & said she does this for all her patients. Although I don't WANT another BMB, I am glad that she is concerned enough to make sure all is well inside marrow. I live in northeast Ohio, takes about 1 & half hours to get there but I like knowing she is there for me!!! Hope you find the right Dr.!!! prayers to you and everyone, granny d

[cfroncz1]

Hi Pam, I am not exactly sure where you are in PA, but I go to Roswell Park Cancer Center in Buffalo, NY. The CML Dr. there is Meir Wetzler. He has been great for me so far. Just giving you another option.

Cheryl

[pammartin]

Thank you, as a fellow supporter pointed out, that is only about three hours away, and if they have a CML specialist on board, even better.

Thanks again!

Pam

[sandimartini47]

Hi,

I know there is a Dr. Mitchell Smith at Johns Hopkins in Baltimore, MD who is suppose to be very good.  I go to a Dr. Mitchell Smith at Fox Chase in Philly; this is a different guy.  I think his name is is Dr. Mitchell B. Smith or B. Mitchell Smith.  He is doing a lot of research on cml.  I don't know any cml specialist in eastern PA (although I grew up there) but there are several excellent hospitals there.  Maybe try Allegheny general in Pittsburgh; that hospital is very good.  good luck, sandi

[Lizzybee]

I think the CML guy at Hopkins is Douglas Smith.   http://www.hopkinsme...ouglas-Smith-MD

[Susan61]

Hi Billie:  I see your having a colonoscopy.  Its kind of late, and you might be all done with it before you read my message.  I am sure you have seen all the posts about having one, unless you have had one before.  The prep is the worst part.  I have had 2 done, and no problem with either one of them.

Hope all goes well for you.  I am sure you will have some news about it when your done, along with some humor.

Susan

[sunbunz]

I am from around the Erie area and just went through MDS/AML and a stem-cell transplant with my father. He doctored at West Penn Hospital with Dr. Rosetti (Dr. Sehovic is on his team as well) We loved Dr. Rosetti. While down there we met people from all around the world that were sent to the pittsburgh hospitals because noone else would touch them. That made us feel great about our decision to stay at West Penn. However my father did have a severe case of AML and was put on a respirator and acquired fungal pneumonia and passed away. I however do not blame that on the doctors. His blasts in his blood were out of control.

I too thought of seeking another opinion but had no luck doing so and felt comfortable with the doctors we were with. I wish you luck. Also, West Penn hospital is not closed and they have since learned that they are staying open now and are bringing back the ER department...

[czkeidel@aol.com]

Hi Pam

I have CML and live in Philadelphia.  I am being treated at Unversity pf Pa Abramson Center....doctor is Alexander Perl.  Recommend him highly and the whole experience.has benn top notch....efficient...capable...caring...staff. Doctor Perl takes time to explain and answer questions...he is thorough..careful..and up on everything related to CML and Leukemia.  He does research and sees patients. 

It is a trek to come here (I lived in Jamestown ny years ago and driving in winter a bummer)....but the medical expertise is excellent

Carole