Forums
Re: Getting two very different perspectives
Thank You everyone for your input. I have taken advice and contacted Dr. Landgren at the NIH. I will be making an appointment. today and making the trip ASAP. I spoke to him yesterday and he truly is amazing. I was pretty apprehensive about even contacting him but after speaking to him there was no question in my mind. My appointment. can't come soon enough!
-
Art - Name: Art
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 12/2011
- Age at diagnosis: 40
Re: Getting two very different perspectives
Hi Art!!
Excellent choice!!
Langren is a wonderful human being and a brilliant clinician. Langren is the #3 worldwide expert in multiple myeloma
I did not know you were wiling to travel outside of the MidWest....you will not regret traveling and as Terryl and John have said you will have a thorough consultation that leaves you with peace of mind.
Good Luck!!
Excellent choice!!
Langren is a wonderful human being and a brilliant clinician. Langren is the #3 worldwide expert in multiple myeloma
I did not know you were wiling to travel outside of the MidWest....you will not regret traveling and as Terryl and John have said you will have a thorough consultation that leaves you with peace of mind.
Good Luck!!
-
suzierose - Name: suzierose
- When were you/they diagnosed?: 2 sept 2011
Re: Getting two very different perspectives
Hi, suzierose:
Who are the top 2 multiple myeloma experts in your mind? Thanks.
Ben
Who are the top 2 multiple myeloma experts in your mind? Thanks.
Ben
-
Ben S.
Re: Getting two very different perspectives
Way to go Art. In my opinion, Dr. Landgren is a saint. I don't know what the future holds for me but I know I am in the ablest hands with him. Terry
-
terryl1 - Name: Terry
- Who do you know with myeloma?: self
- When were you/they diagnosed?: August 10, 2011
- Age at diagnosis: 49
Re: Getting two very different perspectives
Thanks suzierose. I initially was not interested in traveling. But after so many recommendations and after talking to Dr Landgren I could not resist. Terry was also a huge part of my decision after talking to him as well. There are some amazing people in this world and unfortunately it takes something like this to realize it. I talked to Marcia today and will be getting her some info tomorrow. Hopefully I can get an appointment by early next week.
-
Art - Name: Art
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 12/2011
- Age at diagnosis: 40
Re: Getting two very different perspectives
At the risk of sounding really stupid, what does NIH stand for, and where is it located. I'm in California. Do you travel to see someone for a second opiinion, or is over the phone?
Christina
Christina
-
Christina - Name: Christina
- When were you/they diagnosed?: June2005
- Age at diagnosis: 52
Re: Getting two very different perspectives
Hi Christina, the NIH is the National Institutes of Health located outside of DC in Bethesda, MD. It includes the NCI or National Cancer Institutes. Dr. Carl Ola Landgren is the head of the myeloma office. He is originally from Sweden's Karolinska Institute---which by the way awards the Nobel Prize in Medicine. He is involved in researching all aspects of myeloma including its precursor states. He is frequently quoted in the Myeloma Beacon and is widely recognized by his peers as being the best of the best. He has published many important articles on myeloma. He's a wonderful and caring person as well who is driven to try to stop myeloma dead in its tracks if he can. They evaluate people from throughout the US and reimburse for some expenses. There is no cost for consultation or testing.
-
terryl1 - Name: Terry
- Who do you know with myeloma?: self
- When were you/they diagnosed?: August 10, 2011
- Age at diagnosis: 49
Re: Getting two very different perspectives
Christina
I am in the Chicagoland area. I called Dr Landgren yesterday and he called me back within 2 hrs. We talked for 30-40 mins. And could have talked longer but I had to get back to work. He is awesome to say the least. You won't regret calling him if you are interested. He will answer any questions you have and was willing to tell me what he thought about my case based on questions he asked re: my labs. I will be traveling there In the near future even if for just another opinion.
I am in the Chicagoland area. I called Dr Landgren yesterday and he called me back within 2 hrs. We talked for 30-40 mins. And could have talked longer but I had to get back to work. He is awesome to say the least. You won't regret calling him if you are interested. He will answer any questions you have and was willing to tell me what he thought about my case based on questions he asked re: my labs. I will be traveling there In the near future even if for just another opinion.
-
Art - Name: Art
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 12/2011
- Age at diagnosis: 40
Re: Getting two very different perspectives
Hi Art,
I'm coming in on this thread a bit late, but I'll add my 2 cents worth..
I wholeheartedly agree with everyone on getting 2nd or even 3rd opinions and finding a doctor you're comfortable with and confident in. I was in a very similar situation to you: M-Spike = 2.7, no real symptoms except the anemia. First doctor wanted to go straight to SCT and spent very little time with me. Second doctor spent as much time as I needed and covered a variety of options, even though appointments were delayed and rearranged due to an ice storm. By the way, this was Dr. Jakubowiak that suzierose mentioned in an earlier post (too bad for me that he moved from the University of Michigan to the University of Chicago). I also am puzzled by the doctor that wanting you to go straight to auto and allo SCT. Given your current condition, there are other options that would provide much better quality of life (and fortunately you're condition also allows you time to research and make that decision). Hopefully you'll have a much better experience at NIH. Good Luck.
I'm coming in on this thread a bit late, but I'll add my 2 cents worth..
I wholeheartedly agree with everyone on getting 2nd or even 3rd opinions and finding a doctor you're comfortable with and confident in. I was in a very similar situation to you: M-Spike = 2.7, no real symptoms except the anemia. First doctor wanted to go straight to SCT and spent very little time with me. Second doctor spent as much time as I needed and covered a variety of options, even though appointments were delayed and rearranged due to an ice storm. By the way, this was Dr. Jakubowiak that suzierose mentioned in an earlier post (too bad for me that he moved from the University of Michigan to the University of Chicago). I also am puzzled by the doctor that wanting you to go straight to auto and allo SCT. Given your current condition, there are other options that would provide much better quality of life (and fortunately you're condition also allows you time to research and make that decision). Hopefully you'll have a much better experience at NIH. Good Luck.
-
Kevin J - Name: Kevin J
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: Jan 2011
- Age at diagnosis: 52
Re: Getting two very different perspectives
Can anyone explain the chromosome 13 deletion to me? I have read quite a bit on it but, none of it makes sense to me.
-
Art - Name: Art
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 12/2011
- Age at diagnosis: 40
29 posts
• Page 2 of 3 • 1, 2, 3
Return to Member Introductions / Personal Stories