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MDS Myelodysplastic syndromes

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  #1  
Old Thu Aug 28, 2014, 08:47 PM
pleasant1911 pleasant1911 is offline
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Switching doctor question?

Hello everybody, I have a question I hope some of you guys can help me with...

I want to switch my father MDS oncologist doctor. My dad seems want to wait, since he is getting his treatment there and ...guess he is old school and does not want to switch doctors for some reasons... His doctor is good, i guess, but he is not there sometime and he is the only doctor in the office and we had questions to ask him but he is on vacation..again(money must be good treating cancer). just frustrated...

I want to switch him to maryland hemo. oncology center, which has many other location in the state with many doctors in each locations, as his primary care. If my father agrees, and he will soon, because he was kind of feed up too that his doctor was not there and he was feeling his MDS. What is the best way to switch my fathers MDS primary care doctor to a new MDS doctor? Please help me
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Old Thu Aug 28, 2014, 09:20 PM
Neil Cuadra Neil Cuadra is offline
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The most important factor to consider is where your father will get the best care. That requires expertise with MDS, which not all physicians, physician groups, or hospitals have. If you need help identifying the MDS experts in your area, the AA&MDSIF, The MDS Foundation, and other users of these forums can probably help, and doctors you know may be able to provide recommendations as well.

The next factor is how well you can work with a new oncologist, which you won't know until you've had at least one appointment with them. A good doctor will be wiling to listen to you, explain things, and let everyone be part of the team.

Any doctor will be unavailable to you at times. It's not just about vacations. The best oncologists I know keep up with their profession by attending medical meetings and conferences, and the very best of them are the doctors speaking at those conferences. Having a medical team that lets one doctor take over temporarily for another can make up for that.

Other factors to consider when switching doctors are the location (how far you have to travel and how easy or hard that will be for your family) and which doctors your insurance covers.

Logistically it's easy to change doctors. Contact the new doctor, make sure they will accept you as a patient, make an initial appointment, and ask them how best to transfer your medical records for them. Although you can go to the old doctor's office and use your right to see (and photocopy) your medical records, in these days of electronic records there's probably an easier way that your records can be transferred between the doctors.

If the old doctor is receptive to feedback it's OK to explain that you are switching to a group practice where there will alway be experts on call. Doctors, like any other businesspeople, would like to know why they are losing or gaining customers, and they know that you need to do what's best for your family.
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Old Thu Aug 28, 2014, 11:10 PM
pleasant1911 pleasant1911 is offline
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Thanks for the response. What you say makes total sense. This is my first serious disease that is affecting my immediate family(dad, mom, etc). My grandparents all passed away when i was younger, and my parents always protected me, I guess, but now since its my dad, I just want the best and guess i am just getting frustrated, getting major anxiety, and depression all at once, so i cannot imagine what it would feel like having the actual disease myself, but i am HEAVILY AND MAJORLY(if these are words) affected by MDS because i just want my dad to get better. I know you maintain MDS, and rarely cured, so i am just everywhere.

I guess i can wait to try doctors, until we go to Johns Hopkins cancer center next month...

I appreciate this forum, SO MUCH. thanks again.
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Old Fri Aug 29, 2014, 03:56 PM
rar rar is offline
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It is a bit pessimistic to say MDS is rarely cured. I am on day 58 of my way to a cure. Up to maybe 50% of stem cell recipients are cured. SCT is no picnic but at times I think the ordeal is harder on my caregiver than it is on me. You want to go to a major center that specializes in MDS. Only they see enough patients to know how to treat it. I saw 5 different doctors before deciding.

Ray
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Old Thu Oct 9, 2014, 05:31 PM
al harp al harp is offline
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Would you be willing to share where you ended up. We are interested in finding a more specialized (in MDS) hematologist.
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Al, husband of Marie, dx Sept 2013, treated with epo, vidaza and revlimid with no response. Needs transfusion every 2 weeks.
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  #6  
Old Thu Oct 23, 2014, 09:30 AM
MamaS MamaS is offline
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Change drs

I want to change my doc too .... But worried about maybe messing up my chemo cycles... But not comfortable with doc
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Veronica Soto age 62 Diagnosed Sept 2014 Treatment chemo :confused. I am going through problems with understanding my high risk MDS....
Stem cell transplant is not a opp for me because my health is poor
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  #7  
Old Thu Oct 23, 2014, 03:37 PM
Caregive Caregive is offline
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You can also consider getting a second or third opinion. We have gone to two places where they specialize in blood disorders and are back home. We had the records sent electronically to the two other places. In fact our doc knows other doctors so we went to the ones he knows. We got a letter saying what each doc thinks of the situation. It is very helpful to us and I viewed a video saying doctors talk to other doctors on topics that may help patients. Hope this helps.
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