Guest guest Posted January 7, 2010 Report Share Posted January 7, 2010 Hi , That was exactly my experience at OHSU with both Dr. Druker and Dr. Mauro. I always ask myself the question. If a doctor and his staff can't even get scheduling done right, why should I expect that they can do medicine right. I can recall waiting to see the doctor at the Royal Hospital (Montreal) in the clinic. It was a very long wait and there was a woman who just couldn't even sit because she was so exhausted from waiting 2 hours. Ida and I brought her into one of the empty examining rooms, helped her onto the bed and told her that we would come and get her when her name was called. The nursing staff was not happy. I later confronted the doctor and asked why they couldn't be more realistic with their scheduling.The answer I got was that we see all the patients anyways. They had no idea that they were dealing with humans. Zavie Zavie (age 71) 67 Shoreham Avenue Ottawa, Canada, K2G 3X3 dxd AUG/99 INF OCT/99 to FEB/00, CHF No meds FEB/00 to JAN/01 Gleevec since MAR/27/01 (400 mg) CCR SEP/01. #102 in Zero Club 2.8 log reduction Sep/05 3.0 log reduction Jan/06 2.9 log reduction Feb/07 3.6 log reduction Apr/08 3.6 log reduction Sep/08 3.7 log reduction Jan/09 3.8 log reduction May/09 3.8 log reduction Aug/09 4.0 log reduction Dec/09 e-mail: zmiller@... Tel: 613-726-1117 Fax: 613-482-4801 Cell: 613-282-0204 ID: zaviem Tel in FL: 561-429-5507 _____ From: [mailto: ] On Behalf Of hey00nanc Sent: January-07-10 2:07 PM Subject: [ ] Re: MDACC visit so that leaves them little time for patient's extended visits. You will be assigned a Research Nurse whom you can write any time and who will get back to you. They should have given you all of their phone numbers and faxes, as well. Most time I ever had was 5 minutes, but I had a list of questions and we packed it all in. Maybe the image you had in your mind may have turned you off, but I think you will find that in just about any CML specialist. ______________________ Hi Lottie and others, This is NOT the case at all at OHSU, seeing Dr. Druker, Dr. Mauro or Dr. Deininger. There is only one dept, you do not run all over the hospital. First they draw your labs so the doctor will have the results at his visit. Then you have 30 min. scheduled with the doctor's research nurse, who will answer a lot of questions about side effects, etc. Then you have 60 min scheduled with the doctor if he is also doing a bone marrow biopsy at that visit......or 30 min. if it is just an appointment.....and you really have 30 minutes of his time! I have never been rushed at OHSU and many patients scheduled for a first appointment has reported back that the doctor has spent more than an hour with them, answering all their questions. Dr. Druker is known to look you in the face and say.... " are you sure you don't have any other questions? " I have also been to MDACC for 2 visits for a trial before Gleevec, and another time for a consult with Dr. Talpaz. For me, MDACC is a bit like a zoo. In fact, my first visit there for triple therapy, I was supposed to see Dr. Kantarjian and he was running late, and the nurse asked me if it was OK if I only saw the PA and I said " no " ....I die not fly all the way from Oregon to Houston to just see a PA. When Dr. Kantarjian came into the room, he did spend some time with me. So, anyone who wants really personal attention, I highly recommend OHSU.....over the years I don't remember anyone saying they were dissatisfied with the attention they got there, and there were many paitents who flew across country to see Dr. Druker and Dr. Mauro. Just wanted to put this information out there. C. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2010 Report Share Posted January 7, 2010 I have not had a problem at OSHU. The first time I went, when I go to the reception desk, they said, " Are you ? We were expecting you. " I have never been treated so well in my life, even in the offices where I have worked with the doctor in the hospital. MDACC was a long wait, everyone polite, butI felt like a number when I went to The Hutch in Seattle, it was a little more personal, but I felt that they were out for their benefit, not mine. they only thought that I should have a bone marrow transplant, even though i was almost 49 and newly diagnosed. I felt that there was no thought as to my quality or longevity of life, realistically speaking. > . > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2010 Report Share Posted January 7, 2010 I agree , and another thing, if there were 3 people in the waiting room, it was rare. They did not overbook, I never had to wait, and each of those doctors gave you their undivided attention, so did the nurses. If Gleevec had not failed me, I would still be there. However, I find Dr. Talpaz will spend all the time necessary. Fact is, I don't ever have any problems to discuss with him, and our visits are short. MDACC was a zoo. the first day there we spent 9 hours, and I don't think that included the bma. That is one huge hospital, 9-10 floors of cancer patients, one cannot expect to get in and out in a hurry. Waiting for a bma/bmb could take over 2 hours. At U of Mich. it is rare to wait for any procedure, they are very efficient there, like OHSU, and I just love Dr. Talpaz. We are all so lucky to have such great doctors at our disposal, I cringe when I think of when I was first dx and still don't know if she was a cml expert. But I'm here, alive and kicking, and very thankful for OHSU< MDACC and the U of Mich. and all the great doctors. Bobby a ( Bobby ) Doyle, dob 12/17/29 Brecksville, Ohio, USA DX 5/1995 Interferon 9 weeks/Hydroxyurea 5 years o2/2000 to 06/2002 Gleevec trial, OHSU 06/2002 Gleevec/Trisenox Trial, OHSU 06/2003 Gleevec/Zarnestra Trial, OHSU 04/2004 Sprycel Trial, MDACC, CCR in 10 months 04/2008 XL228 Trial, U of Mich. PCR 5.69 04/2009 Ariad Trial AP24534 09/2009 PCR 0.017 #840 Zavie's Zero Club From: hey00nanc <ncogan@...> Subject: [ ] Re: MDACC visit Date: Thursday, January 7, 2010, 2:06 PM  so that leaves them little time for patient's extended visits. You will be assigned a Research Nurse whom you can write any time and who will get back to you. They should have given you all of their phone numbers and faxes, as well. Most time I ever had was 5 minutes, but I had a list of questions and we packed it all in. Maybe the image you had in your mind may have turned you off, but I think you will find that in just about any CML specialist. ____________ _________ _ Hi Lottie and others, This is NOT the case at all at OHSU, seeing Dr. Druker, Dr. Mauro or Dr. Deininger. There is only one dept, you do not run all over the hospital. First they draw your labs so the doctor will have the results at his visit. Then you have 30 min. scheduled with the doctor's research nurse, who will answer a lot of questions about side effects, etc. Then you have 60 min scheduled with the doctor if he is also doing a bone marrow biopsy at that visit......or 30 min. if it is just an appointment. ....and you really have 30 minutes of his time! I have never been rushed at OHSU and many patients scheduled for a first appointment has reported back that the doctor has spent more than an hour with them, answering all their questions. Dr. Druker is known to look you in the face and say.... " are you sure you don't have any other questions? " I have also been to MDACC for 2 visits for a trial before Gleevec, and another time for a consult with Dr. Talpaz. For me, MDACC is a bit like a zoo. In fact, my first visit there for triple therapy, I was supposed to see Dr. Kantarjian and he was running late, and the nurse asked me if it was OK if I only saw the PA and I said " no " ....I die not fly all the way from Oregon to Houston to just see a PA. When Dr. Kantarjian came into the room, he did spend some time with me. So, anyone who wants really personal attention, I highly recommend OHSU.....over the years I don't remember anyone saying they were dissatisfied with the attention they got there, and there were many paitents who flew across country to see Dr. Druker and Dr. Mauro. Just wanted to put this information out there. C. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2010 Report Share Posted January 8, 2010 I'm glad to hear all the wonderful news on OHSU. I live in Washington State, and have always had my labs sent to the UW lab, but after many complications with getting the right tests run, and getting my information back, my Oncologist wants to start sending my labs to OHSU.  My labs will be drawn next week and sent off to them. I'm hoping my numbers keep going in the right direction. Thanks everyone. Diagnosed 5/'08 10/09 #1276 in Zavie's Zero club ________________________________ From: hey00nanc <ncogan@...> Sent: Thu, January 7, 2010 11:06:30 AM Subject: [ ] Re: MDACC visit  so that leaves them little time for patient's extended visits. You will be assigned a Research Nurse whom you can write any time and who will get back to you. They should have given you all of their phone numbers and faxes, as well. Most time I ever had was 5 minutes, but I had a list of questions and we packed it all in. Maybe the image you had in your mind may have turned you off, but I think you will find that in just about any CML specialist. ____________ _________ _ Hi Lottie and others, This is NOT the case at all at OHSU, seeing Dr. Druker, Dr. Mauro or Dr. Deininger. There is only one dept, you do not run all over the hospital. First they draw your labs so the doctor will have the results at his visit. Then you have 30 min. scheduled with the doctor's research nurse, who will answer a lot of questions about side effects, etc. Then you have 60 min scheduled with the doctor if he is also doing a bone marrow biopsy at that visit......or 30 min. if it is just an appointment. ....and you really have 30 minutes of his time! I have never been rushed at OHSU and many patients scheduled for a first appointment has reported back that the doctor has spent more than an hour with them, answering all their questions. Dr. Druker is known to look you in the face and say.... " are you sure you don't have any other questions? " I have also been to MDACC for 2 visits for a trial before Gleevec, and another time for a consult with Dr. Talpaz. For me, MDACC is a bit like a zoo. In fact, my first visit there for triple therapy, I was supposed to see Dr. Kantarjian and he was running late, and the nurse asked me if it was OK if I only saw the PA and I said " no " ....I die not fly all the way from Oregon to Houston to just see a PA. When Dr. Kantarjian came into the room, he did spend some time with me. So, anyone who wants really personal attention, I highly recommend OHSU.....over the years I don't remember anyone saying they were dissatisfied with the attention they got there, and there were many paitents who flew across country to see Dr. Druker and Dr. Mauro. Just wanted to put this information out there. C. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2010 Report Share Posted January 8, 2010 In 2005 When my mother was there with lung cancer. She was diagnosed with stage 4 c and they did not begin treatment for a couple of months then the radiation burnt her esophagus to the point she could not swallow. When we told the Dr this he ignored would not hear it. In the end the cancer had spread to the brain and bones. While in their hospital the floor above her room was being remodeled. During the night they drilled and so heard all the drilling all night long. When my dad went to give her a shower (she had to be carried and 100% dependant on someone to do for her) When he turned on the shower very little water came out but they were both covered in concrete. We had to watch the nurses when it came to pill time. On several occasions they tried to give her the wrong medicine. Granted there are many good nurses there. We jsut came across the wrong ones. Three days later she was moved to hospice. On our way out the door with her on a gurney the wonderful Lung specialist DR kim came up to us to inform us that He had good news the lung cancer was gone. Anita ________________________________ From: hey00nanc <ncogan@...> Sent: Fri, January 8, 2010 1:04:56 PM Subject: [ ] Re: MDACC visit MDACC was a zoo. the first day there we spent 9 hours, and I don't think that included the bma. That is one huge hospital, 9-10 floors of cancer patients, one cannot expect to get in and out in a hurry. Waiting for a bma/bmb could take over 2 hours. At U of Mich. it is rare to wait for any procedure, they are very efficient there, like OHSU, and I just love Dr. Talpaz. ____________ _________ _______ Hi Bobby, When I did see Dr. Talpaz at MDACC for a consult, he spent all the time I needed with me, to answer my questions. Also, I was organized with my questions and I expected that....which I think helps. I think Dr. Talpaz is much happier (from what I hear) at Ann Arbor, MI because he has a more personal situation like Dr. Druker has at OHSU. At OHSU, the doctor himself does the bone marrow biopsy, which I really appreciate.. ...why would I want someone with about 6 weeks of training doing that, as is done at MDACC (but they do have some experienced long term techs, and I would ask for one of them.) I do agree that we have many dedicated cml doctors and they are not toally responsible for the working situation... .they are just dumped into the system. MDACC works like an ol' time medical CLINIC..go here for this, go there for that......and many people are given the same appt. time so that no time is wasted if there is a no-show (that is why they schedule like that). It is how county free medical clinics used to be set up....sit and wait for your visit. Funny thing is that going to MDACC is not cheaper....it has the rep as being one of the most expensive places to be treated....also because they do lots of unnecessary (at times) tests. For my consult only (I was a Dr. Druker patient at the time) they wanted to draw like 13+ vials of blood...which I refused....and did that cause a commotion. You are put on auto-pilot and they expect to do the same thing for each patient. Finally after getting a real nurse, and discussing it with Dr. Talpaz, I think they drew about 4 vials of blood for necessary testing for my visit. (In case I sound like a rabble rouser....I worked in medical care for 30+ years, so I knew my way around the park and was not afraid to question things.) Doing lots of unnecessary tests is ONE of the main reasons that medical care is so expensive in this country...in our system of payment, hospitals/clinics get compensated for doing lots of tests, so there is that incentive to doing lots of tests. C. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2010 Report Share Posted January 9, 2010 Hi , I really feel I need to respond to this--I think you are being a bit hard on MDACC and could be scaring off patients who really should be seeing a cml specialist. I went to MDACC for 8 years starting in 2000. I was unable to get a trial slot for Gleevec at OHSU so I went to MDACC where I did get a slot. My first visit was a long wait time and there were tons of people in the waiting room for the next year-- but it was always much quieter after that. I haven't been back for 2 years (no need to go anymore)--but I was in and out in a bit over 1 hour including labs, bma, and doctor's visit during the last 4 visits. Maybe the trick is early appointments--I was always done by 8:30. I've never waited over 15 minutes for a bma and never had a bad experience. Dr. K always spent enough time with me but I always took a list of questions. He would even take the list from me to look it over to be sure he had answered everything. He drew pictures to explain things and I still have those pictures. When I want results (this is still true)--I email the nurse and I am always amazed at how quick the response is. I almost always hear back within an hour. I also have emailed Dr. K with questions and get a response within a day. I wish I could do that with my local onc. OHSU sounds wonderful and I'm sure it is--but if you put all the cml patients seen at MDACC at OHSU it won't be able to handle them. I don't even know if Dr. Druker takes new patients anymore. During the first couple years, when the wait was longer, I would find cml patients in the waiting room and we would all have a good time just talking with each other. There were typically about 10 of us--when there was a crowd I thought it was a good thing as I would have more people to compare notes with. MDACC is still a very good place to go for patients who are in need of a trial when they are running low on options--they often get trials before OHSU. I have always gotten excellent care there--but you do need to find your way around (there are always people willing to help) and sometimes deal with crowds. You also need to ask questions--many patients don't want to know anything about their illness and if you don't ask I can understand a doctor not volunteering a lot of information as he/she won't know whether or not you want to know and how much you understand about your illness. It's not easy to think of questions on the spot--so patients should come prepared with a list. I always kept a running list for months before my visit--when I thought of something I would add it to the list. At MDACC they do see more CML patients than the other experts and do have a lot of experience. They do take a lot of blood and run a lot of tests--but they ask each patient if they are willing to contribute this for research purposes. They are the ones that write a lot of the general papers and they are consulted very frequently by local oncs. They consider part of their mission to be the education of local oncs out in the community. If I were newly diagnosed and wondering what to do and saw this list this week, I think I would be frightened out of even considering visiting MDACC based on the discussion. Everyone should be aware that this is not the whole picture. Best wishes, Dorothy On Jan 8, 2010, at 2:04 PM, hey00nanc wrote: > > > > MDACC was a zoo. the first day there we spent 9 hours, and I > don't think that included the bma. That is one huge hospital, 9-10 > floors of cancer patients, one cannot expect to get in and out in a > hurry. Waiting for a bma/bmb could take over 2 hours. At U of > Mich. it is rare to wait for any procedure, they are very efficient > there, like OHSU, and I just love Dr. Talpaz. > ____________________________ > Hi Bobby, > > When I did see Dr. Talpaz at MDACC for a consult, he spent all the > time I needed with me, to answer my questions. Also, I was organized > with my questions and I expected that....which I think helps. > I think Dr. Talpaz is much happier (from what I hear) at Ann Arbor, > MI because he has a more personal situation like Dr. Druker has at > OHSU. > At OHSU, the doctor himself does the bone marrow biopsy, which I > really appreciate.....why would I want someone with about 6 weeks of > training doing that, as is done at MDACC (but they do have some > experienced long term techs, and I would ask for one of them.) > > I do agree that we have many dedicated cml doctors and they are not > toally responsible for the working situation....they are just dumped > into the system. MDACC works like an ol' time medical CLINIC..go > here for this, go there for that......and many people are given the > same appt. time so that no time is wasted if there is a no-show > (that is why they schedule like that). It is how county free medical > clinics used to be set up....sit and wait for your visit. > > Funny thing is that going to MDACC is not cheaper....it has the rep > as being one of the most expensive places to be treated....also > because they do lots of unnecessary (at times) tests. For my consult > only (I was a Dr. Druker patient at the time) they wanted to draw > like 13+ vials of blood...which I refused....and did that cause a > commotion. You are put on auto-pilot and they expect to do the same > thing for each patient. Finally after getting a real nurse, and > discussing it with Dr. Talpaz, I think they drew about 4 vials of > blood for necessary testing for my visit. > (In case I sound like a rabble rouser....I worked in medical care > for 30+ years, so I knew my way around the park and was not afraid > to question things.) Doing lots of unnecessary tests is ONE of the > main reasons that medical care is so expensive in this country...in > our system of payment, hospitals/clinics get compensated for doing > lots of tests, so there is that incentive to doing lots of tests. > > C. > > > > R Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2010 Report Share Posted January 9, 2010 Hi Dorothy, I remember meeting you at MDACC, and what you say is very true.  They are huge, but Lottie says they have changed things now, and there is no longer the large amount of people in the waiting room. I hear they do things differently, than when the trial first started (BMS). I really only had a long wait the first few days, then I found an apartment and made very early morning appointments. As for the BMA/BMB procedure, I truly never had a bad one there, and never had to be sedated, some of them were the best. Dr. Talpaz does not do the procedures, and when i told him Dr. Druker did, he was amazed, as they are time consuming. It was fun at MDACC when we could all get together, " The Mayfield Mob " . That is where I met Len and Ernie Paschal, and we are dear friends today, same with Lottie. Talking about hospitals is a bit like talking about having a baby. First moms hear horror stories about the ordeal, only to find out when it is over it wasn't half as bad as they heard it was. But you are right, we should be more careful about talking about hospitals , doctors and care. I think sometimes old timers like me forget how terrified newbies are just over the aspect of having cml, they don't need to have second thoughts on their care. I, for one, will be much more careful in the future.  Blessings , Bobby a ( Bobby ) Doyle, dob 12/17/29 Brecksville, Ohio, USA DX 5/1995 Interferon 9 weeks/Hydroxyurea 5 years o2/2000 to 06/2002 Gleevec trial, OHSU 06/2002 Gleevec/Trisenox Trial, OHSU 06/2003 Gleevec/Zarnestra Trial, OHSU 04/2004 Sprycel Trial, MDACC, CCR in 10 months 04/2008 XL228 Trial, U of Mich. PCR 5.69 04/2009 Ariad Trial AP24534 09/2009 PCR 0.017 #840 Zavie's Zero Club > > > > MDACC was a zoo. the first day there we spent 9 hours, and I > don't think that included the bma. That is one huge hospital, 9-10 > floors of cancer patients, one cannot expect to get in and out in a > hurry. Waiting for a bma/bmb could take over 2 hours. At U of > Mich. it is rare to wait for any procedure, they are very efficient > there, like OHSU, and I just love Dr. Talpaz. > ____________ _________ _______ > Hi Bobby, > > When I did see Dr. Talpaz at MDACC for a consult, he spent all the > time I needed with me, to answer my questions. Also, I was organized > with my questions and I expected that....which I think helps. > I think Dr. Talpaz is much happier (from what I hear) at Ann Arbor, > MI because he has a more personal situation like Dr. Druker has at > OHSU. > At OHSU, the doctor himself does the bone marrow biopsy, which I > really appreciate.. ...why would I want someone with about 6 weeks of > training doing that, as is done at MDACC (but they do have some > experienced long term techs, and I would ask for one of them.) > > I do agree that we have many dedicated cml doctors and they are not > toally responsible for the working situation... .they are just dumped > into the system. MDACC works like an ol' time medical CLINIC..go > here for this, go there for that......and many people are given the > same appt. time so that no time is wasted if there is a no-show > (that is why they schedule like that). It is how county free medical > clinics used to be set up....sit and wait for your visit. > > Funny thing is that going to MDACC is not cheaper....it has the rep > as being one of the most expensive places to be treated....also > because they do lots of unnecessary (at times) tests. For my consult > only (I was a Dr. Druker patient at the time) they wanted to draw > like 13+ vials of blood...which I refused....and did that cause a > commotion. You are put on auto-pilot and they expect to do the same > thing for each patient. Finally after getting a real nurse, and > discussing it with Dr. Talpaz, I think they drew about 4 vials of > blood for necessary testing for my visit. > (In case I sound like a rabble rouser....I worked in medical care > for 30+ years, so I knew my way around the park and was not afraid > to question things.) Doing lots of unnecessary tests is ONE of the > main reasons that medical care is so expensive in this country...in > our system of payment, hospitals/clinics get compensated for doing > lots of tests, so there is that incentive to doing lots of tests. > > C. > > > > R Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2010 Report Share Posted January 9, 2010 Hi Bobbie, I remember you well--I met Len and Ernie at the same time (we all had lunch at the House). I think the crowds are partially a function of what is going on in treatment options. It was much quieter 2 years ago when I last went then it was in 2000 when people from all over the world with CML were flocking to MDACC begging for trial slots and a chance to get on STI571 (Gleevec). On my first visit I did have a full day wait (although all of it wasn't spent waiting-I had to keep meeting with different people). I found the waiting room quite fascinating on that day and it certainly made the time go faster. There were 5 interpreters in the room at one time as there were so many languages being spoken. I remember a young man who looked like an arab sheik (he had the scarf type head gear on)-- screaming that he didn't have time to wait as he was very important. He had to wait just like the rest of us. I'm glad to hear that you are doing so well now--it warms my heart when I read those kinds of results. Hugs, Dorothy On Jan 9, 2010, at 11:01 AM, ROBERTA DOYLE wrote: > Hi Dorothy, I remember meeting you at MDACC, and what you say is > very true. They are huge, but Lottie says they have changed things > now, and there is no longer the large amount of people in the > waiting room. I hear they do things differently, than when the trial > first started (BMS). I really only had a long wait the first few > days, then I found an apartment and made very early morning > appointments. As for the BMA/BMB procedure, I truly never had a bad > one there, and never had to be sedated, some of them were the best. > Dr. Talpaz does not do the procedures, and when i told him Dr. > Druker did, he was amazed, as they are time consuming. > It was fun at MDACC when we could all get together, " The Mayfield > Mob " . That is where I met Len and Ernie Paschal, and we are dear > friends today, same with > Lottie. > Talking about hospitals is a bit like talking about having a baby. > First moms hear horror stories about the ordeal, only to find out > when it is over it wasn't half as bad as they heard it was. But you > are right, we should be more careful about talking about > hospitals , doctors and care. I think sometimes old timers like > me forget how terrified newbies are just over the aspect of having > cml, they don't need to have second thoughts on their care. I, for > one, will be much more careful in the future. Blessings , Bobby > > a ( Bobby ) Doyle, dob 12/17/29 > Brecksville, Ohio, USA > DX 5/1995 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2010 Report Share Posted January 11, 2010 Dorothy, Thank you for your letter. I have been a patient at MDA since 1993. I have had two different kinds of leukemia and have had several different doctors there as " my " doctor. All of them have been great---no complaints. I have found over the years that the waits are longer if your appointment is on a Monday. I don't know why exactly, but i've learned to schedule my appointments for Tues. and seldom have much of a wait. As far as BMA, I have had many, many done there and have had only one that was more than a little uncomfortable. The PAs (I understand that's who does them) are great. The only really painful BMA I've ever had done was was done in a doctor's office in another city. I've always said that I'll never allow anyone else but the people at MDA to do a BMA on me. I email Dr. Kantarjian's research nurse with questions and always get an answer back quickly, within 24 hours. I feel VERY blessed to be a 16 year leukemia cancer survivor and for the fact that I live relatively close to a great cancer center for my treatments. It's true that people need to be proactive in their care and ask questions, but I trust MDA with my life. Thanks for allowing me to share, Gay Bratton On Jan 9, 2010, at 9:16 AM, Dorothy Emery wrote: > Hi , > > I really feel I need to respond to this--I think you are being a bit > hard on MDACC and could be scaring off patients who really should be > seeing a cml specialist. I went to MDACC for 8 years starting in > 2000. I was unable to get a trial slot for Gleevec at OHSU so I went > to MDACC where I did get a slot. My first visit was a long wait time > and there were tons of people in the waiting room for the next year-- > but it was always much quieter after that. I haven't been back for 2 > years (no need to go anymore)--but I was in and out in a bit over 1 > hour including labs, bma, and doctor's visit during the last 4 > visits. Maybe the trick is early appointments--I was always done by > 8:30. I've never waited over 15 minutes for a bma and never had a bad > experience. Dr. K always spent enough time with me but I always took > a list of questions. He would even take the list from me to look it > over to be sure he had answered everything. He drew pictures to > explain things and I still have those pictures. When I want results > (this is still true)--I email the nurse and I am always amazed at how > quick the response is. I almost always hear back within an hour. I > also have emailed Dr. K with questions and get a response within a > day. I wish I could do that with my local onc. > > OHSU sounds wonderful and I'm sure it is--but if you put all the cml > patients seen at MDACC at OHSU it won't be able to handle them. I > don't even know if Dr. Druker takes new patients anymore. During the > first couple years, when the wait was longer, I would find cml > patients in the waiting room and we would all have a good time just > talking with each other. There were typically about 10 of us--when > there was a crowd I thought it was a good thing as I would have more > people to compare notes with. > > MDACC is still a very good place to go for patients who are in need of > a trial when they are running low on options--they often get trials > before OHSU. I have always gotten excellent care there--but you do > need to find your way around (there are always people willing to help) > and sometimes deal with crowds. You also need to ask questions--many > patients don't want to know anything about their illness and if you > don't ask I can understand a doctor not volunteering a lot of > information as he/she won't know whether or not you want to know and > how much you understand about your illness. It's not easy to think of > questions on the spot--so patients should come prepared with a list. > I always kept a running list for months before my visit--when I > thought of something I would add it to the list. > > At MDACC they do see more CML patients than the other experts and do > have a lot of experience. They do take a lot of blood and run a lot > of tests--but they ask each patient if they are willing to contribute > this for research purposes. They are the ones that write a lot of the > general papers and they are consulted very frequently by local oncs. > They consider part of their mission to be the education of local oncs > out in the community. > > If I were newly diagnosed and wondering what to do and saw this list > this week, I think I would be frightened out of even considering > visiting MDACC based on the discussion. Everyone should be aware that > this is not the whole picture. > > Best wishes, > Dorothy > > On Jan 8, 2010, at 2:04 PM, hey00nanc wrote: > > > > > > > > > MDACC was a zoo. the first day there we spent 9 hours, and I > > don't think that included the bma. That is one huge hospital, 9-10 > > floors of cancer patients, one cannot expect to get in and out in a > > hurry. Waiting for a bma/bmb could take over 2 hours. At U of > > Mich. it is rare to wait for any procedure, they are very efficient > > there, like OHSU, and I just love Dr. Talpaz. > > ____________________________ > > Hi Bobby, > > > > When I did see Dr. Talpaz at MDACC for a consult, he spent all the > > time I needed with me, to answer my questions. Also, I was organized > > with my questions and I expected that....which I think helps. > > I think Dr. Talpaz is much happier (from what I hear) at Ann Arbor, > > MI because he has a more personal situation like Dr. Druker has at > > OHSU. > > At OHSU, the doctor himself does the bone marrow biopsy, which I > > really appreciate.....why would I want someone with about 6 weeks of > > training doing that, as is done at MDACC (but they do have some > > experienced long term techs, and I would ask for one of them.) > > > > I do agree that we have many dedicated cml doctors and they are not > > toally responsible for the working situation....they are just dumped > > into the system. MDACC works like an ol' time medical CLINIC..go > > here for this, go there for that......and many people are given the > > same appt. time so that no time is wasted if there is a no-show > > (that is why they schedule like that). It is how county free medical > > clinics used to be set up....sit and wait for your visit. > > > > Funny thing is that going to MDACC is not cheaper....it has the rep > > as being one of the most expensive places to be treated....also > > because they do lots of unnecessary (at times) tests. For my consult > > only (I was a Dr. Druker patient at the time) they wanted to draw > > like 13+ vials of blood...which I refused....and did that cause a > > commotion. You are put on auto-pilot and they expect to do the same > > thing for each patient. Finally after getting a real nurse, and > > discussing it with Dr. Talpaz, I think they drew about 4 vials of > > blood for necessary testing for my visit. > > (In case I sound like a rabble rouser....I worked in medical care > > for 30+ years, so I knew my way around the park and was not afraid > > to question things.) Doing lots of unnecessary tests is ONE of the > > main reasons that medical care is so expensive in this country...in > > our system of payment, hospitals/clinics get compensated for doing > > lots of tests, so there is that incentive to doing lots of tests. > > > > C. > > > > > > > > R > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2010 Report Share Posted January 11, 2010 Gay- I agree with you 100%, I'll never have a BMA done anywhere but MDACC.  They are great there. Working toward Zero, Danny -- Sent from my Palm Prē Gay Bratton wrote: Dorothy, Thank you for your letter. I have been a patient at MDA since 1993. I have had two different kinds of leukemia and have had several different doctors there as " my " doctor. All of them have been great---no complaints. I have found over the years that the waits are longer if your appointment is on a Monday. I don't know why exactly, but i've learned to schedule my appointments for Tues. and seldom have much of a wait. As far as BMA, I have had many, many done there and have had only one that was more than a little uncomfortable. The PAs (I understand that's who does them) are great. The only really painful BMA I've ever had done was was done in a doctor's office in another city. I've always said that I'll never allow anyone else but the people at MDA to do a BMA on me. I email Dr. Kantarjian's research nurse with questions and always get an answer back quickly, within 24 hours. I feel VERY blessed to be a 16 year leukemia cancer survivor and for the fact that I live relatively close to a great cancer center for my treatments. It's true that people need to be proactive in their care and ask questions, but I trust MDA with my life. Thanks for allowing me to share, Gay Bratton On Jan 9, 2010, at 9:16 AM, Dorothy Emery wrote: > Hi , > > I really feel I need to respond to this--I think you are being a bit > hard on MDACC and could be scaring off patients who really should be > seeing a cml specialist. I went to MDACC for 8 years starting in > 2000. I was unable to get a trial slot for Gleevec at OHSU so I went > to MDACC where I did get a slot. My first visit was a long wait time > and there were tons of people in the waiting room for the next year-- > but it was always much quieter after that. I haven't been back for 2 > years (no need to go anymore)--but I was in and out in a bit over 1 > hour including labs, bma, and doctor's visit during the last 4 > visits. Maybe the trick is early appointments--I was always done by > 8:30. I've never waited over 15 minutes for a bma and never had a bad > experience. Dr. K always spent enough time with me but I always took > a list of questions. He would even take the list from me to look it > over to be sure he had answered everything. He drew pictures to > explain things and I still have those pictures. When I want results > (this is still true)--I email the nurse and I am always amazed at how > quick the response is. I almost always hear back within an hour. I > also have emailed Dr. K with questions and get a response within a > day. I wish I could do that with my local onc. > > OHSU sounds wonderful and I'm sure it is--but if you put all the cml > patients seen at MDACC at OHSU it won't be able to handle them. I > don't even know if Dr. Druker takes new patients anymore. During the > first couple years, when the wait was longer, I would find cml > patients in the waiting room and we would all have a good time just > talking with each other. There were typically about 10 of us--when > there was a crowd I thought it was a good thing as I would have more > people to compare notes with. > > MDACC is still a very good place to go for patients who are in need of > a trial when they are running low on options--they often get trials > before OHSU. I have always gotten excellent care there--but you do > need to find your way around (there are always people willing to help) > and sometimes deal with crowds. You also need to ask questions--many > patients don't want to know anything about their illness and if you > don't ask I can understand a doctor not volunteering a lot of > information as he/she won't know whether or not you want to know and > how much you understand about your illness. It's not easy to think of > questions on the spot--so patients should come prepared with a list. > I always kept a running list for months before my visit--when I > thought of something I would add it to the list. > > At MDACC they do see more CML patients than the other experts and do > have a lot of experience. They do take a lot of blood and run a lot > of tests--but they ask each patient if they are willing to contribute > this for research purposes. They are the ones that write a lot of the > general papers and they are consulted very frequently by local oncs. > They consider part of their mission to be the education of local oncs > out in the community. > > If I were newly diagnosed and wondering what to do and saw this list > this week, I think I would be frightened out of even considering > visiting MDACC based on the discussion. Everyone should be aware that > this is not the whole picture. > > Best wishes, > Dorothy > > On Jan 8, 2010, at 2:04 PM, hey00nanc wrote: > > > > > > > > > MDACC� was a zoo.� the first day there we spent 9 hours, and I > > don't think that included the bma.� That is one huge hospital, 9-10 > > floors of cancer patients, one cannot expect to get in and out in a > > hurry. Waiting for a bma/bmb could take over 2 hours.� At U of > > Mich. it is rare to wait for any procedure, they are very efficient > > there, like OHSU, and I just love Dr. Talpaz. > > ____________________________ > > Hi Bobby, > > > > When I did see Dr. Talpaz at MDACC for a consult, he spent all the > > time I needed with me, to answer my questions. Also, I was organized > > with my questions and I expected that....which I think helps. > > I think Dr. Talpaz is much happier (from what I hear) at Ann Arbor, > > MI because he has a more personal situation like Dr. Druker has at > > OHSU. > > At OHSU, the doctor himself does the bone marrow biopsy, which I > > really appreciate.....why would I want someone with about 6 weeks of > > training doing that, as is done at MDACC (but they do have some > > experienced long term techs, and I would ask for one of them.) > > > > I do agree that we have many dedicated cml doctors and they are not > > toally responsible for the working situation....they are just dumped > > into the system. MDACC works like an ol' time medical CLINIC..go > > here for this, go there for that......and many people are given the > > same appt. time so that no time is wasted if there is a no-show > > (that is why they schedule like that). It is how county free medical > > clinics used to be set up....sit and wait for your visit. > > > > Funny thing is that going to MDACC is not cheaper....it has the rep > > as being one of the most expensive places to be treated....also > > because they do lots of unnecessary (at times) tests. For my consult > > only (I was a Dr. Druker patient at the time) they wanted to draw > > like 13+ vials of blood...which I refused....and did that cause a > > commotion. You are put on auto-pilot and they expect to do the same > > thing for each patient. Finally after getting a real nurse, and > > discussing it with Dr. Talpaz, I think they drew about 4 vials of > > blood for necessary testing for my visit. > > (In case I sound like a rabble rouser....I worked in medical care > > for 30+ years, so I knew my way around the park and was not afraid > > to question things.) Doing lots of unnecessary tests is ONE of the > > main reasons that medical care is so expensive in this country...in > > our system of payment, hospitals/clinics get compensated for doing > > lots of tests, so there is that incentive to doing lots of tests. > > > > C. > > > > > > > > R > > Quote Link to comment Share on other sites More sharing options...
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