I currently have MGUS with a few signs that I may progress, including an abnormal Kappa/Lamda ratio. I have sent an email to Dr. Landgren's assistant to see if I can join his MGUS/SMM History study. My question is that I am in Portland, OR and wondering if I live too far for a study at NIH. Also, if you progress and want to join a treatment trial of Dr. Landgren's do you take your treatments at the NIH or at the cancer treatment center in your hometown? (for me that would be OHSU)
Thank you, Toni
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tonil - Name: Toni
- Who do you know with myeloma?: me
- When were you/they diagnosed?: 2/2012
- Age at diagnosis: 57
Re: Question about NIH studies
Hi, I was in the Landgren study but unfortunately I just "graduated" to the carfilzomib trial due to disease progression. The NIH takes people from all states and they reimburse for travel, etc. Keep trying to contact them and they will usually schedule you for fairly soon. At the NIH, you will have a battery of tests and will know exactly where you stand in terms of level of disease. Dr. Landgren and his team are top notch. Good luck.
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terryl1 - Name: Terry
- Who do you know with myeloma?: self
- When were you/they diagnosed?: August 10, 2011
- Age at diagnosis: 49
Re: Question about NIH studies
Terryl1 - thank you for your reply. I emailed Dr. Landgren's assistant late Friday so I assume I will hear from her this week. I am very interested in going to NIH for a second opinion. My hematologist says that I have MGUS but my kidney doctor says I am having early kidney damage from the Bence-Jones proteins. There will be no problem for me to go to NIH once or twice a year for the history study.
Terryl1 I am so sorry to hear that you have progressed. You are in my prayers as well as all the great folks on this site who are fighting multiple myeloma. Do you go to the NIH for your weekly treatments or take them in your home town? Do you know if anyone on a clinical trial is on the West Coast? If I ever progress I would like to be in one of Dr. Landgren's trials but don't know if it is possible for me living so far away.
My best to you,
Toni
Terryl1 I am so sorry to hear that you have progressed. You are in my prayers as well as all the great folks on this site who are fighting multiple myeloma. Do you go to the NIH for your weekly treatments or take them in your home town? Do you know if anyone on a clinical trial is on the West Coast? If I ever progress I would like to be in one of Dr. Landgren's trials but don't know if it is possible for me living so far away.
My best to you,
Toni
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tonil - Name: Toni
- Who do you know with myeloma?: me
- When were you/they diagnosed?: 2/2012
- Age at diagnosis: 57
Re: Question about NIH studies
Hi Tonil, I had the choice to be treated locally at UPenn in Philly near where I live. It has a great cancer center and a great myeloma department. However, Dr. Landgren offered me a spot in the cutting edge carfilzomib trial and I accepted after they accommodated my work schedule so I wouldn't have to exhaust my sick time. I am only 50 with a wife and kids and I can't retire yet nor do I want to. I will have to travel from the Philly area to Bethesda, MD 3 times per month for infusions, etc. for 8 months. After that, it is all oral meds. for 1 year. The UPenn protocol would have been much easier because it would be all oral but they did not have the carfilzomib trial or anything like it for me. You can be in a clinical trial at the NIH and live anywhere, but obviously it would be difficult unless it is an all oral protocol or you could temporarily live in the area. The natural history study has people from all over the place. Thanks for your prayers and I wish you all the best. Big hug. Terry L.
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terryl1 - Name: Terry
- Who do you know with myeloma?: self
- When were you/they diagnosed?: August 10, 2011
- Age at diagnosis: 49
Re: Question about NIH studies
Tonil
They will get back to you. Sometimes it takes a day or two. They have clinics on Tues. and Thurs. so they are very busy on those days. You won't be disappointed. I went there in Feb. and am due back in August. I am taking part in the Smoldering natural history progression trial and I am from the Midwest. You will definitely have answers after you visit them. Transportation to and from the airport and local Hotels is excellent. There is several hotels within a mile and I arrived late one evening and caught the last bus from airport to NIH. I walked to my Hotel because the shuttles were done. It was 8:00 pm. It's a very nice area. I even walked through the local neighborhood during the day to pass time and visited a local Catholic Church.
Keep us posted
Gods Blessings
Art
They will get back to you. Sometimes it takes a day or two. They have clinics on Tues. and Thurs. so they are very busy on those days. You won't be disappointed. I went there in Feb. and am due back in August. I am taking part in the Smoldering natural history progression trial and I am from the Midwest. You will definitely have answers after you visit them. Transportation to and from the airport and local Hotels is excellent. There is several hotels within a mile and I arrived late one evening and caught the last bus from airport to NIH. I walked to my Hotel because the shuttles were done. It was 8:00 pm. It's a very nice area. I even walked through the local neighborhood during the day to pass time and visited a local Catholic Church.
Keep us posted
Gods Blessings
Art
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Art - Name: Art
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 12/2011
- Age at diagnosis: 40
Re: Question about NIH studies
I just sent an email to Dr. Landgren after reading this thread. In less than 10 minutes I got a response followed by an email from a colleague sending me consent forms and info on where to send my medical history to.
I am pleasantly surprised as to how quick this happened.
I was just diagnosed in April 2012 with Smoldering Multiple Myeloma. But I'm not sure that it could possibly be MGUS(looking at the numbers) and lack of any symptoms.
I am pleasantly surprised as to how quick this happened.
I was just diagnosed in April 2012 with Smoldering Multiple Myeloma. But I'm not sure that it could possibly be MGUS(looking at the numbers) and lack of any symptoms.
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Stan W.
Re: Question about NIH studies
Stan
Glad to hear you got a quick response. i hope that in your case it is MGUS as opposed to SMM. The criteria for diagnosis is pretty clear. You will however, leave the NIH with a clear understanding of your condition. I can't say enough about them and the facility. Might as well get something back out of your tax Dollars
. Check out this link, maybe it will help you clarify.
http://myeloma.org/ArticlePage.action?tabId=1&menuId=334&articleId=3462&aTab=-1
Keep us posted
Art
Glad to hear you got a quick response. i hope that in your case it is MGUS as opposed to SMM. The criteria for diagnosis is pretty clear. You will however, leave the NIH with a clear understanding of your condition. I can't say enough about them and the facility. Might as well get something back out of your tax Dollars
. Check out this link, maybe it will help you clarify.http://myeloma.org/ArticlePage.action?tabId=1&menuId=334&articleId=3462&aTab=-1
Keep us posted
Art
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Art - Name: Art
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 12/2011
- Age at diagnosis: 40
Re: Question about NIH studies
tonil --
I just saw your posts. I live in Corvallis. I'm in the NIH MGUS/SMM Natural History trial -- started October 2010. Since that time I've also been in two other NIH trials, and I'm strongly considering starting another one there. Regardless of whether you have by now gotten successfully connected with NIH, feel free to contact me and I can give you lots of info about the trials, transportation, reimbursement, etc.. I may not check back at this site too often so I suggest you email bruce323*comcast.net (replace the * with @). By the way I'm also friends with Terryl1, looking for good things to come his way.
-- Bruce P.
I just saw your posts. I live in Corvallis. I'm in the NIH MGUS/SMM Natural History trial -- started October 2010. Since that time I've also been in two other NIH trials, and I'm strongly considering starting another one there. Regardless of whether you have by now gotten successfully connected with NIH, feel free to contact me and I can give you lots of info about the trials, transportation, reimbursement, etc.. I may not check back at this site too often so I suggest you email bruce323*comcast.net (replace the * with @). By the way I'm also friends with Terryl1, looking for good things to come his way.
-- Bruce P.
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bruce323
Re: Question about NIH studies
I just received a call from NIH. They're setting an appointment for July. I'm coming from NYC and was wondering about lodging & transportation costs. My wife will drive down with me but, we have 2 dogs and I'm hoping for hotels that allow dogs.
If anybody can pass on any info it would be great.
Thanks
If anybody can pass on any info it would be great.
Thanks
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Stan W. - Name: Stan
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: SMM-April 2012
- Age at diagnosis: 58
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