5 replies to this topic

[BY196]

I am very frustrated with my current situation and am hoping to get recommendations from other CML-ers in and around New York City.  I am being seen now at Beth Israel and, while I like my doctor (and think he is knowledgeable), the disorganization on the part of the Cancer Center in which he practices is really getting to me.  I have read that many of you get to have a blood draw and then go in to meet with the onc once the results are back. They will not do that at my CC, because no one trusts the nursing staff to do things right without close supervision. But the current set-up doesn't ensure that things are done right either. Twice, I have had to come back for redraws due to the right vials not being filled. (I now know which vials are for which tests and check them myself.) It is also difficult to get anyone to call me back. I have been trying since Monday morning to come in for a stat CBC to check whether I'm anemic. I started Sprycel relatively recently and my gums are white; my sister, who is a doctor, said I need to get it checked right away. No one will call me back. I am not the kind of patient who calls all the time (or really ever), so when I do think something is wrong I'm generally experiencing something fairly extreme. They are late getting me my PCR results from my last visit; I mentioned that as well when I called and no call back.

I am not in a position to travel out of the city for care given my significant work and childcare responsibilities.  Those of you who see doctors in NYC and are happy with your care, could you let me know whom you see? Also, could you indicate whether you get the blood draw in advance of your appointment with the onc? This seems much more efficient to me and I'd like to see someone who does this.

Many thanks for your input!

Beth

[CallMeLucky]

I live in CT and travel into NYC to Memorial Sloan Kettering Cancer Center.  My doctor is Ellin Berman.  She is a CML specialist and has been treating the disease for over 30 years.  She is one of the co-authors for the NCCN guidelines for treating the disease and she has a very impressive resume.  She is friendly and caring, but she is also tough and won't pull any punches with you.  I find the support staff very competent and responsive.  I have never had an issue with any of my blood work or anything like that.  The way they work with me is I come in for my visit, they draw my blood and do an exam.  I wait for the results of the CBC and then they send me home and tell me to call in one to two weeks for results of FISH and/or PCR.  I would prefer to have the results of those tests when I meet with them, but that would mean I have to travel into the city twice within two weeks, which is not practical.  One time I told them I wanted to do that and they set me up to come in for just a blood draw two weeks before, then I came back for the appointment and we discussed all the results.  If you are close to the hospital I don't see any reason why you can't go 2 weeks ahead of time to get blood draw.

I would recommend calling MSKCC.

[BY196]

Thanks, Lucky. Ellin Berman is indeed a leader in the field. Did you ask to see her specifically? Was it hard to get in?

I went to Sloan for a second opinion when I was first diagnosed and the guy who saw me seemed right out of fellowship and was not confidence-inspiring in terms of his personal demeanor.

Beth

[CallMeLucky]

I found out I had a problem during a routine physical when blood counts were high.  My GP sent me to Hemonc at Danbury Hospital.  They did the initial assessment and sent me to Sloan for second opinion, I got a call from them saying my appintment would be with Dr. Berman and that was that.  I had read up a bit before I went and after meeting Berman I felt it was best to be treated by her.  The local guy was great and there was nothing high risk about my case, I would have likely been fine being treated locally and it would have been easier.  But I thought about the fact it is a rare disease and if something were to go wrong, I didn't want to first have to scramble to find an expert who didn't know me.  I figured people travel from around the world to go to MSKCC.  My hour and half drive in didn't seem like that big a deal.

I think you should just call Berman's office and tell them you want an appt with her and that you are considering transferring to MSKCC but only if you can be treated by her, tell them she was recommended by another CML patient.  They're a business like any other, they'll likely give you an appointment with her.  May not be tomorrow but I would be shocked if they didn't get you in soon.  Just be clear you are not looking for another opinion but rather long term treatment.

[Susan61]

Hi Beth:  I was going to say talk to Lucky.  I knew he went into New York for his care.  Unfortunately the only time I was in Beth Israel hospital was when I was born back in 1947 for 50 cents.  I did my clinical trial atNY Presbyterian Hospital for my Gleevec, and I did have some issues then.  I was under their control for everything due to being in the trial back in 2000.

     Its always a good thing to get more opinions anyhow, but it does not sound like things are being handled properly for you.  You have to be your own advocate and push to get the right treatment.  Hope you do well with a new doctor and facility.

[pamsouth]

Beth, 

I recently changed oncologist.  I had my first labs draw at the new oncologist last March.  I had to call in two weeks from the labs to find out the result, the nurse said for some reason it took longer to get the results.  I told the nurse I wanted to come in two weeks before oncologist office visit, to get my labs, and look at them before my next visit.  I think she was a little been surprised, at my request and she said well you would have to make two trips in.  It is only 15 miles from my home, but a major city and $5.00 to park, but it is worth it to me.  Anyhow the nurse said Ok and switched me over to make the lab appointment. So I am very happy that the doctor did comply with my request but I did get the impression that is not the norm.  When I was there in March I realized that some cancer patients had driven for 100 ? 200 miles.  So for many that would not be possible.

PamSouth