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Re: My visit to NIH
Question for anyone enrolled in the Natural History Study of MGUS and SMM! Okay. I have been in contact (via phone and email) with one of the doctors at the NIH and have faxed my records with the intention of going there for a second opinion and to enroll in the MGUS/SMM study. I would like go in January or February. The doctor said that he has me on his list for coming in January or February and they will be in touch as the date gets closer. He said their clinic is different in that they put out a list for the clinic each week and he doesn’t know if we can “get an appointment” for a particular day or not. Those people who have gone for an initial visit, when did you actually find out when you are scheduled to go? What kind of notice did you get? A week? A month? More? I’m confused. I will be coming from Boston so I need to figure out travel arrangements (also get time off from work!) and I need a little bit more than a week of notice! Thanks so much.
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elizabeth104 - Name: Elizabeth
- When were you/they diagnosed?: 25 MGUS, 28 SMM
Re: My visit to NIH
I got my appointment about a month ahead of time.
Good luck.
Good luck.
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mrsv118 - Name: Kate
- Who do you know with myeloma?: ME
- When were you/they diagnosed?: 7/19/12
- Age at diagnosis: 48
Re: My visit to NIH
I just got back from my two day visit at the NIH. Everyone was great! Had my labs, urine, skeletal survey and bone marrow tested. You guys were right, George was great! So much less painful they my bone marrow here in DE.
Met with Dr Landgren and he said I am still smoldering and he thinks lower risk for progression although my cellular workup is not done yet. I enrolled in the natural history study and will return in six months unless something changes. He discussed the other options for those with high risk of progression just for my information.
Terry, the on he recommend was the trial your involved in, how are you doing, any side effects?
I on the off chance my genetics comes back with me at high risk I would probably go that route.
any way, it was definitely worth the trip!
Met with Dr Landgren and he said I am still smoldering and he thinks lower risk for progression although my cellular workup is not done yet. I enrolled in the natural history study and will return in six months unless something changes. He discussed the other options for those with high risk of progression just for my information.
Terry, the on he recommend was the trial your involved in, how are you doing, any side effects?
I on the off chance my genetics comes back with me at high risk I would probably go that route.
any way, it was definitely worth the trip!
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mrsv118 - Name: Kate
- Who do you know with myeloma?: ME
- When were you/they diagnosed?: 7/19/12
- Age at diagnosis: 48
Re: My visit to NIH
That's great you had a good experience! I am glad it was worth the trip for you. I am looking forward to going and enrolling in the study. Just curious, what was your schedule like?
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elizabeth104 - Name: Elizabeth
- When were you/they diagnosed?: 25 MGUS, 28 SMM
Re: My visit to NIH
elizabeth104 I had an appointment. on Monday at 0930 and was done at 4pm. this included: admissions stuff, labs, skeletal survey, urine test and bone marrow biopsy. Next day was 1130 appointment for clinic , getting results and meeting with doctor landgran. They are very busy so plan on the day being long. We were out at 3pm on day two. All that being said, they gave us all the time we needed and never acted rushed.
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mrsv118 - Name: Kate
- Who do you know with myeloma?: ME
- When were you/they diagnosed?: 7/19/12
- Age at diagnosis: 48
Re: My visit to NIH
Thanks so much for the information Kate!
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elizabeth104 - Name: Elizabeth
- When were you/they diagnosed?: 25 MGUS, 28 SMM
Re: My visit to NIH
mrsv118 wrote:
> elizabeth104 I had an appointment. on Monday at 0930 and was done at 4pm. this
> included: admissions stuff, labs, skeletal survey, urine test and bone
> marrow biopsy. Next day was 1130 appointment for clinic , getting results and
> meeting with doctor landgran. They are very busy so plan on the day being
> long. We were out at 3pm on day two. All that being said, they gave us
> all the time we needed and never acted rushed.
Hi mrsv118 can you please tell me the cost for all of the above tests that were done during your visit to NIH. Basically I leave in Chicago and my parents are coming here in Jan from India. My mother was diagnosed with Plasmacytoma a year back and now is on daily maintenance dose of Revlimid 10mg. I would want to have a second opinion but as they are coming from India, their insurance will not cover any of this. So I just wanted to have an idea what would the cost be if we decided to visit NIH for a second opinion.
> elizabeth104 I had an appointment. on Monday at 0930 and was done at 4pm. this
> included: admissions stuff, labs, skeletal survey, urine test and bone
> marrow biopsy. Next day was 1130 appointment for clinic , getting results and
> meeting with doctor landgran. They are very busy so plan on the day being
> long. We were out at 3pm on day two. All that being said, they gave us
> all the time we needed and never acted rushed.
Hi mrsv118 can you please tell me the cost for all of the above tests that were done during your visit to NIH. Basically I leave in Chicago and my parents are coming here in Jan from India. My mother was diagnosed with Plasmacytoma a year back and now is on daily maintenance dose of Revlimid 10mg. I would want to have a second opinion but as they are coming from India, their insurance will not cover any of this. So I just wanted to have an idea what would the cost be if we decided to visit NIH for a second opinion.
Last edited by Ruchi on Mon Nov 26, 2012 6:42 pm, edited 1 time in total.
Re: My visit to NIH
I enrolled in a study so my testing was at no cost to me.
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mrsv118 - Name: Kate
- Who do you know with myeloma?: ME
- When were you/they diagnosed?: 7/19/12
- Age at diagnosis: 48
Re: My visit to NIH
Thank you so much for your reply mrsv118. Can you tell me the process for enrolling in study or if there are any criterias for the enrollment?
Re: My visit to NIH
Dear Ruchi, Our family lives in the country outside of the DC area and we would be honored to help in any way (airport pickup, use of car, a restful home base for your mother). We have many friends throughout southern India who have opened their homes to us and we would love to give back. Please private message me if there is a way we can help.
All our best, Dana
All our best, Dana
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Dana - Name: Dana
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2009
- Age at diagnosis: 43
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