11 replies to this topic

[kellbell]

Does anyone know where to go in the Chicago area? I wanted to get a second opinion and was wondering if anyone else knows of a Dr. I could see. I live near chicago/Joliet?   Thanks,  Kelly

[Tedsey]

I know a very good doctor in Evanston, IL.  If you want to personal message me, I could give you her contact info.  But it may be too far.  She also works out of the Glenview hospital.

Tedsey

[PhoenixPat]

Dr. Christine Frankfurt with the Robert Lurie Comprehensive Cancer Center at Northwestern University sees several people with CML that I know in Chicago, and they highly recommend her. This podcast is older (December 2010) but will enable you to learn more about her:

http://www.patientpo...4a3003048d404c1

[Tedsey]

I would not recommend going there (been there).  They don't have a CML specialist.  They don't seem to know very much about the disease (my past onc wanted to give me a BMT mostly because my blood counts were too low and it was the only way to cure CML).  The atmosphere is very negative.  If you want to spend an entire day just waiting for a blood draw and a 10 min. onc appt, (not kidding, each appt. was 6-8 hours wait--and a couple times they forgot about me in the waiting room.  I had a 1 year old and 3 year old to find a sitter for---very, very difficult waiting such a long time.  In the very beginning, my sister in law would yell at me when I got back that I take too long, but when we started paying her, she was still willing to still sit---thank goodness, because they wanted me there twice a week, then every week to every other week--it was a nightmare until I changed oncs).  My current onc felt that I did not need to be seen so much and when I had some issues come up and had to come every other week for shots, I was allowed to bring the kids.

The oncs there don't do their own BMBs.  The physician's assistants do it.  After a few visits with the onc, you will be introduced to the physician's assistant who will take over and become your "oncologist".    But if this is not a concern, and you just want maintenance, and have lots of time, I am sure this cancer center is sufficient.

FYI, unless things have changed, Lurie has their own BCR-ABL monitoring system.  It is not called a PCR, but is used in the same way.  The numbers are given raw and cannot be compared to any other scale.  If you switch oncs, you will have to start all over with the PCR.

Good luck.

[PhoenixPat]

Good to know, thanks for the info!

[lehrerin]

Dr. Richard Larson at the University of Chicago.

http://www.uchospita...ard-larson.html

If you decide to see him, be sure to leave early as parking at U of C in the parking garage is very difficult to find.   We usually always go up to the top level and can find a space there.  I believe he is doing the Ponatinib study at U of C.

The U of C DOES NOT use the IS for PCR---so you won't be able to compare PCRs.

He also has published a number of studies on CML.

http://www.medscape....warticle/728590

http://bloodjournal....7/4499.full.pdf

[kellbell]

Thanks everyone for your info. I really appreciate it. I Did not know there were specailist in our area. I was trying to find someone on my own and wasn't having much luck. Thanks agian you are all very helpful.  I did find a U of C cancer center at the new silver cross in New Lenox. I don't know of a cml Dr. there but I wonder if they communicate with eachother. It would be much closer and easier than going to chicago.    

[lehrerin]

I would encourage you to go to U of C itself, and see Dr. Larson.   I would not go to the hospital in New Lenox.   In the beginning you will have to go frequently (we went weekly for about 4 months--but that was our choice-- your local doctor can draw the basic weekly  labs and fax the results to U of C).   When things settle down you will eventually only have to go every 3 months.    It is definitely worth it.   We usually have all the lab results back within 15 minutes (with the exception of PCR testing), and all of our very many questions are answered completely at the visit.   We then get an email in a week or two with the PCR results, telling us to keeping doing what we are doing.   A few times we had issues, but a quick phone call or email cleared things up. 

BTW we do not see Dr. Larson at U of C.   My CMLer is managed in the pediatric heme/onc clinic at Comer Children's Hospital.  We just found out at our last visit that they will continue to manage her treatment well into adulthood (mid30s).  

Message was edited by: Abena

[PhoenixPat]

Sorry I didn't think of this earlier - I suggest you get in touch with Lisa Lewandowski in Chicago, the facilitator for the Chicago CML Connection group of the National CML Society. Her email address is llewandowski (at) nationalcmlsociety.org. This link goes to the NCMLS Illinois page, which lists Richard A. Larson, MD at the University of Chicago as a CML specialist

. http://www.nationalc...s-cml-resources

Hope this helps!

Pat

[Lisal]

Thanks Pat!!

Kelly,  I am one of the Chicago area facilitators for the CML Connection group.  Please feel free to contact me via the email address Pat gave you above.  I live near Joliet!!

I do go to Northwestern and see Dr. Jessica Altman.  I have only had positive experiences at Northwestern.  I have not experienced anything likeTedsey has except the wait times.  The nice thing about the docs at Northwestern is that you can see your regular onc and see the docs at Northwestern every other visit or once a year, or just for a 2nd opinion.  They are more than willing to work with your local onc.

Tedsey is correct in that they do not use the IS.   The docs at Northwestern see over a hundred CML patients!

Let me know how I can help you!

Lisa

[kellbell]

Ya I can see how that would make sense to see the cml specailist at least one time at first and then go locally for the basic testing. Thanks so much for the advice. I am going to look into making an appointment there I am also going to take pats advice also and contact lisa for more direction also. Thank you very much it sounds like a good place to go.  Kelly

[kellbell]

Thanks pat and lisa. I am going to use your link and contact lisa. Your suggestions are greatly appreciated!  Kelly