20 replies to this topic

[sarah1403989277]

curious if anyone on here has had any experience with dr mauro at osuh in portland oregon.i will be seeing him soon, dont have a date yet.but soon but i do know he is the one i will be seeing. any imput please

[Lynne D]

Dr. Mauro is on the Medical Advisory Board for the National CML Society. There is an ask the experts section and some videos. I personally don't go to Dr. Mauro but I have met him. I do go to Dr. Druker and I have all the respect for both of them.

www.nationalcmlsociety.org  (I think that the website is down at this second but check later)

https://www.facebook...society?sk=info

Good luck

Lynne

[sarah1403989277]

thank you

[Trey]

Dr Mauro is well respected.

[sarah1403989277]

i did not get to see dr murio i seen dr holtan instead. she was at the mayo clinic for 8 and halgf years she should know what shes doing I HOPE ANYWAY

[sarah1403989277]

i did not get to see dr murio i seen dr holtan instead. she was at the mayo clinic for 8 and halgf years she should know what shes doing I HOPE ANYWAY

[Trey]

If you scheduled and appointment with Dr Mauro and got Dr Holtan, that is a significant downgrade.  Her time at Mayo was mainly as a student and intern/resident from what I can tell.  Dr Holtan is a relative newby and focuses on acute leukemia and BMTs.  Oncs who specialize in BMTs think they are just dandy. 

http://www.ohsu.edu/...n.cfm?WT_rank=1

Seems like OHSU is going commercial medical care.  Disappointing to hear your "bait and switch" story.  I expected better of them.

[sarah1403989277]

do you think that maybe i should try and see if i could get another consult?i was kind of scared when she walked into the room and b4 she introduced herself she handed me a book on bmt.

[Trey]

Given your experience at OHSU Knight Cancer Center I would not recommend them again.  That is appalling behavior on their part. 

Did she even discuss your 3-way translocation? 

Well, you need someone better than your local Idaho Onc.

[sarah1403989277]

yes she did she said i have a mild form of mds.but that was about it she just mainly talked about a bmt,i am moving back to oregon and i will get my onc back she was really good,she stayed on top of things, and they will send me back to ohsu but i will request to see mauro or drucker.i dont want the bmt i just hope the sprycel works

[Tedsey]

I agree.  The bait and switch thing is horrible.  Which brings me to ask why Dr Druker and Mauro would work on a team with an onc who seems BMT crazy.  And with all the info out there, why are BMT docs still crazy about doing them on people with CML?  My last onc was a BMT doc who worked mainly with acute leukemias.  She gave the impression she wanted me to stop wasting my time on TKIs and get one (she gave me a timeline when I was to have one).  I only saw her for five months.  Hate to think if I stayed with her, I would never have been switched to Sprycel (despite the research, she was very much against any other drug for me but Gleevec).  Anyway, I went from having limited success on Gleevec to a much better response on Sprycel.  Sarah, I really hope Sprycel works for you!

Teds 

[HPL]

Hi Sarah,

Out of curiousity, did you to OHSU between 2/20 and 2/24th (ie. Last week?). I am dr. Mauro's patient, and I was originally scheduled for that week, but he ended up travelling that week, and they switched me to the prior week. Since I am in a trial, I am assuming that they didn't really have a choice to switch me to a different oncologist.I know someone else they moved as well.

I am so sorry for your experience, that is horrible. You were looking for expert advice, and you didn't get what you expected. I would contact Dr. Mauro if I were you, and explain your situation and what you were looking for, and I would be very surprised if he didn't reply. I know there are tons of people on this board who have met and been treated by him, and what you experienced was nothing like what he is known for. If you don't find his email address, please just email me here and I will get it to you. 

Regards,

Hans

Woodinville, WA

[sarah1403989277]

yes my appt was on 2/23.i would love to have his email.

[CallMeLucky]

Good luck with contacting him and getting a response.  I had met Dr Mauro and reached out to him some time ago for some advice.  I received no response at all.  I would understand an email saying "I'm sorry I can't help you" if he didn't want to offer any advice, but to not even have the courtesy to respond, considerably changed my opinion of him.

[HPL]

Hi Sarah,

I do know how busy he gets, he reminds me to ping him sometimes as well. if you want to Private message me here, then I may have a suggestion that would work to get in touch with him.

Regards,

Hans

[HPL]

Tedsey, it's an interesting experience. I had the same 2 oncologists before, they were quick to want to send me to BMT, and the same happened to my friend. In fact, he shared with me that he felt pressured into the BMT procedure they picked (it was an experimental since he didn't have a good match). That center (not OHSU) happens to be known as a transplant center, so I think it often depends on the focus of the center and the doctor. At OHSU, I have never felt pressured to go the BMT route, we know it's there and have discussed it, but not as the current treatement plan. Both Dr. Druker, Deininger and Mauro consider it in their toolkit of treatments, but always as last path from what I have observed.

Regards,

Hans

[Gstephens]

Hi Sarah,

I'm sorry that things did not work out as anticipated on your OHSU visit. Evidently, there were crossed wires somewhere. I'm sure that Dr. Mauro would be happy to see you and I honestly don't think that a bait and switch scheme was being played out here. As a matter of fact, Dr. Mauro is more than happy to talk with you and see about the possibilities of a consultation. Don't hesitate to email him directly at maurom@ohsu.edu. He is traveling a bit right now, but will return your message. Also, If I can help work through this with you, I am most happy to do so.

Best wishes to you!

Greg

[sarah1403989277]

thank you greg i will email him. i also dont think it was a bait and switch i was told by someone on here that he was traveling that week and they had to change their appt with him.i was just a little put out when i was handed a book on bmt .scared the bejeepers outta me to say the least. but all 3 of my oncs have said i have mds along with my cml and that is what is worrying them. then i have people on here telling me they dont know what they are talking about. man i am so confused. i need HELP  .i will email him and see what he has to say are u his patient? where do u liove do u have to travel i am in idaho but moving to oregon soon

[sarah1403989277]

also i have posted my results on the sweets disease question would u mind looking at it and see if u can tell me anything thank you

[Badblood]

I am a patient of Dr. Mauro and just wanted to let you know that if at possible you should try to reschedule with him.

I had bounced around a bit before getting sent to OHSU and from the second we met him and his assistant Linda we felt like Finally we have a doctor that understands this disease and what we really are going through. Can't say enough good things about Dr. Mauro and his staff they are the best.