Just got back from 2 days of testing at NIH. The people there are wonderful, caring and understanding.
Only thing I wasn't looking forward to was the bi-lateral bone marrow biopsy. But the Dr. (George) was great. And, his team held my hand to get through it.
I'm now in the MGUS/SMM Natural History Study. I'm on the fence about the carfilzomib trial for SMM but, my test results have to come back to see if I qualify.
There's another trial that isn't as intense coming up. An oral version of Velcade.
My Kappa/Lambda numbers changed for the better since my last blood test. Hoping it's the Curcumin doing it.
I'm enrolled in the BHQ880 trial at Mt. Sinai that starts next month. This makes the most sense to me right now.
Not sure I want to dive into chemo trial only 4 months after diagnosed with SMM.
We'll see. At least I now have options and, a team of doctors to ask questions.
Forums
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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
Re: My visit to NIH
Hi, Stan:
Did you have to have your DKK1 expression level tested before being admitted to the BHQ880 trial? Thanks.
Ben
Did you have to have your DKK1 expression level tested before being admitted to the BHQ880 trial? Thanks.
Ben
-
Ben S.
Re: My visit to NIH
Stan
They are great at the NIH. George is awesome. If you have not had a BMbx elsewhere you cant truly appreciate him.
he is a PA. ( physicians assistant) I too am in the natural progression study there and am going in on Aug. 2 for my 6 month Follow up. they offered me the Carfilzomib trial for my SMM but I can't logistically do that as I live in the Midwest. I have to work full time and am in the Trades and don't get much paid time off. I am 41 with three kids (15,13,11) I too have been taking Curcumin ( Thorne brand Meriva Curcumin) which is supposed to be much more bio available. I have a good feeling that I will Smolder for quite some time so I'm just keeping an eye on things and trying to stay away from treatment until absolutely necessary.
Best Wishes
Art
They are great at the NIH. George is awesome. If you have not had a BMbx elsewhere you cant truly appreciate him.
he is a PA. ( physicians assistant) I too am in the natural progression study there and am going in on Aug. 2 for my 6 month Follow up. they offered me the Carfilzomib trial for my SMM but I can't logistically do that as I live in the Midwest. I have to work full time and am in the Trades and don't get much paid time off. I am 41 with three kids (15,13,11) I too have been taking Curcumin ( Thorne brand Meriva Curcumin) which is supposed to be much more bio available. I have a good feeling that I will Smolder for quite some time so I'm just keeping an eye on things and trying to stay away from treatment until absolutely necessary. Best Wishes
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: My visit to NIH
Ben S. wrote:
> Hi, Stan:
>
> Did you have to have your DKK1 expression level tested before being
> admitted to the BHQ880 trial? Thanks.
>
> Ben
Ben,
There were a bunch of tests. I don't know if that was part of it. I trust Dr. Jagannath. I went to him for a second opinion. He explained where I stand as far as SMM. According to his criteria, I'm not high risk. He mentioned the BHQ880 trial. It sounded good to me as it seems to be less intense than other treatments and helps bone while possibly stopping the Myeloma cells from progressing.
> Hi, Stan:
>
> Did you have to have your DKK1 expression level tested before being
> admitted to the BHQ880 trial? Thanks.
>
> Ben
Ben,
There were a bunch of tests. I don't know if that was part of it. I trust Dr. Jagannath. I went to him for a second opinion. He explained where I stand as far as SMM. According to his criteria, I'm not high risk. He mentioned the BHQ880 trial. It sounded good to me as it seems to be less intense than other treatments and helps bone while possibly stopping the Myeloma cells from progressing.
-
Stan W. - Name: Stan
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: SMM-April 2012
- Age at diagnosis: 58
Re: My visit to NIH
Art wrote:
> Stan
> They are great at the NIH. George is awesome. If you have not had a BMbx
> elsewhere you cant truly appreciate him. he is a PA. ( physicians
> assistant) I too am in the natural progression study there and am going in
> on Aug. 2 for my 6 month Follow up. they offered me the carfilzomib trial
> for my SMM but I can't logistically do that as I live in the Midwest. I
> have to work full time and am in the Trades and don't get much paid time
> off. I am 41 with three kids (15,13,11) I too have been taking Curcumin (
> Thorne brand Meriva Curcumin) which is supposed to be much more bio
> available. I have a good feeling that I will Smolder for quite some time so
> I'm just keeping an eye on things and trying to stay away from treatment
> until absolutely necessary.
> Best Wishes
> Art
Hi Art,
Yes, George and his team are great. I was told I didn't have to do both sides if I didn't want to. The Doctors told me George is the best. He really was. I did both sides.
I met with Doctor Roschewski. He explained the Carfilzomib trial. He said some jump right in. Others say no way. And, those like myself are on the fence.
Discussed it with my wife. Going back and forth to Bethesda weekly from NYC would be a strain.
I'm an under employed graphic artist so money is an issue. I have a possible long term job coming up the same time they want me to start the trial.
Others said not to "Poke the Tiger". I'm smoldering and perhaps the BHQ880 trial will have positive results. The chemo route may be to much for me to deal with psychologically right now.
Doctor Roschewski mentioned another trial with an oral version of Velcade. He said it and other trials coming down the pike might not be so intense.
I'll stick to the Curcumin for now. MAybe it DID have a positive effect on the Kappa/Lambda numbers.
> Stan
> They are great at the NIH. George is awesome. If you have not had a BMbx
> elsewhere you cant truly appreciate him.
he is a PA. ( physicians> assistant) I too am in the natural progression study there and am going in
> on Aug. 2 for my 6 month Follow up. they offered me the carfilzomib trial
> for my SMM but I can't logistically do that as I live in the Midwest. I
> have to work full time and am in the Trades and don't get much paid time
> off. I am 41 with three kids (15,13,11) I too have been taking Curcumin (
> Thorne brand Meriva Curcumin) which is supposed to be much more bio
> available. I have a good feeling that I will Smolder for quite some time so
> I'm just keeping an eye on things and trying to stay away from treatment
> until absolutely necessary.
> Best Wishes
> Art
Hi Art,
Yes, George and his team are great. I was told I didn't have to do both sides if I didn't want to. The Doctors told me George is the best. He really was. I did both sides.
I met with Doctor Roschewski. He explained the Carfilzomib trial. He said some jump right in. Others say no way. And, those like myself are on the fence.
Discussed it with my wife. Going back and forth to Bethesda weekly from NYC would be a strain.
I'm an under employed graphic artist so money is an issue. I have a possible long term job coming up the same time they want me to start the trial.
Others said not to "Poke the Tiger". I'm smoldering and perhaps the BHQ880 trial will have positive results. The chemo route may be to much for me to deal with psychologically right now.
Doctor Roschewski mentioned another trial with an oral version of Velcade. He said it and other trials coming down the pike might not be so intense.
I'll stick to the Curcumin for now. MAybe it DID have a positive effect on the Kappa/Lambda numbers.
-
Stan W. - Name: Stan
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: SMM-April 2012
- Age at diagnosis: 58
Re: My visit to NIH
Hi Art!
Now that carfilzomib has been approved..you will have access in the Midwest!! Yay!
Hope that you are doing well and that your disease remains in "smoldering" stage obviating the need for carfilzomib.
Although, I hear that the new view is to treat earlier before the disease progresses to more advance stages where end organ damage (CRAB) is present.
What are you hearing at NIH about early (smoldering) multiple myeloma treatment vs. late (CRAB) multiple myeloma treatment?
Now that carfilzomib has been approved..you will have access in the Midwest!! Yay!
Hope that you are doing well and that your disease remains in "smoldering" stage obviating the need for carfilzomib.
Although, I hear that the new view is to treat earlier before the disease progresses to more advance stages where end organ damage (CRAB) is present.
What are you hearing at NIH about early (smoldering) multiple myeloma treatment vs. late (CRAB) multiple myeloma treatment?
-
suzierose - Name: suzierose
- When were you/they diagnosed?: 2 sept 2011
Re: My visit to NIH
Hi Stan!
Dr Roschewski is very niice and quite knowledgeable. I also liked his personality, engaging with wry wit.
I must say Stan, you are quite the trooper Bi-lateral BM's.?! Carter is good but that aspiration just kick butts and I would need drugs to endure a second one back to back, even though I get the rationale (hot spots). You go Stan!!
While the team for multiple myeloma is outstanding at NIH, did you feel it was worthwhile overall for you to go there, in terms of what you may/maynot have learned about your multiple myeloma status personally? Did it help you make a better decision in terms of how you want to move forward, even if not at this time?
Did you speak with Landgren? What is the new philosophy in terms of smoldering and progression? multiple myeloma reminds me so much of AIDS in that regard, where initially they did not treat the early stages (non-symptomatic) and when they did treat (symptomatic) it was too late and mortality was inevitable. It just seems to me that is why multiple myeloma is 'incurable" we wait too late to treat it.
Landgren has tremendous expertise in terms of how the disease progresses, did he give you any new insights?
Dr Roschewski is very niice and quite knowledgeable. I also liked his personality, engaging with wry wit.
I must say Stan, you are quite the trooper Bi-lateral BM's.?! Carter is good but that aspiration just kick butts and I would need drugs to endure a second one back to back, even though I get the rationale (hot spots). You go Stan!!
While the team for multiple myeloma is outstanding at NIH, did you feel it was worthwhile overall for you to go there, in terms of what you may/maynot have learned about your multiple myeloma status personally? Did it help you make a better decision in terms of how you want to move forward, even if not at this time?
Did you speak with Landgren? What is the new philosophy in terms of smoldering and progression? multiple myeloma reminds me so much of AIDS in that regard, where initially they did not treat the early stages (non-symptomatic) and when they did treat (symptomatic) it was too late and mortality was inevitable. It just seems to me that is why multiple myeloma is 'incurable" we wait too late to treat it.
Landgren has tremendous expertise in terms of how the disease progresses, did he give you any new insights?
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suzierose - Name: suzierose
- When were you/they diagnosed?: 2 sept 2011
Re: My visit to NIH
Suzieose
That's a good question. I have not been there since Feb. of this year. As of then Dr Landgren was pretty much an advicate of waitful watching. Although they offered me the trial. I'll find out if that opinion has changed in 2 weeks. I have to say I have a gut feeling I will remain smoldering. So, I'm going with that right now! I know many people may feel that way but this is just something I can't explain, i just have this very strong assurance that I'm going to Smolder for quite some time. Gotta believe in something right??
Hope you are doing well
Art
That's a good question. I have not been there since Feb. of this year. As of then Dr Landgren was pretty much an advicate of waitful watching. Although they offered me the trial. I'll find out if that opinion has changed in 2 weeks. I have to say I have a gut feeling I will remain smoldering. So, I'm going with that right now! I know many people may feel that way but this is just something I can't explain, i just have this very strong assurance that I'm going to Smolder for quite some time. Gotta believe in something right??
Hope you are doing well
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: My visit to NIH
Stan
I also met with Rochewski (and Dr Kwok) before I saw Dr. Landgren. Both were very nice and Personable. Dr R was very knowledgable even though he was new to
The clinic at the time and was more of a Lymphoma Dr. I enjoyed speaking with him and Dr K.
Truth is all we can do is gather info and find options. Then we make choices based on our opinions and circumstances. I have the option of a Carfilzomib trial here in Chgo. also. But this is for active multiple myeloma. So I plan on staying clear of that for as long as possible!!
You will make the decision that is right for you and you just have to stick with it and trust yourself because the truth is nobody really knows what is better. Just opinions and educated guesses. Treat early, treat later, whats right for one is not right for another and we all react differently. Go with your Gut!! That's what I'm doing. Some praying helps too!!
Good luck
Art
I also met with Rochewski (and Dr Kwok) before I saw Dr. Landgren. Both were very nice and Personable. Dr R was very knowledgable even though he was new to
The clinic at the time and was more of a Lymphoma Dr. I enjoyed speaking with him and Dr K.
Truth is all we can do is gather info and find options. Then we make choices based on our opinions and circumstances. I have the option of a Carfilzomib trial here in Chgo. also. But this is for active multiple myeloma. So I plan on staying clear of that for as long as possible!!
You will make the decision that is right for you and you just have to stick with it and trust yourself because the truth is nobody really knows what is better. Just opinions and educated guesses. Treat early, treat later, whats right for one is not right for another and we all react differently. Go with your Gut!! That's what I'm doing. Some praying helps too!!
Good luck
Art
-
Art - Name: Art
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 12/2011
- Age at diagnosis: 40
Re: My visit to NIH
Suzierose,
I went to NIH to be involved in the Natural Progression study. I also felt that I would have an inside track to any drug trials if I was interested.
I didn't meet Dr. Landgren but, Dr Roschewski was very informative. At the time of our meeting we didn't have any of my test results other than CBC. I'm hoping to hear from them within the week.
Dr Roschewski confirmed my reasoning for going to NIH as far as drug trials. He said if I didn't want to participate in something "more aggressive" like the Carfilzomib trial, there will be other less intense trials coming up.
I did learn that NIH's criteria for high risk isn't the same as other institutions.
My gut feeling is to go with the BHQ880 trial with Dr. Jagannath at Mt. Sinai. I like the idea of preserving my bones while possibly holding off the progression of the Myeloma cells in the marrow.
The Carfilzomib trial at NIH would be to demanding right now as I'd have to travel back and forth from NYC on a weekly basis. They'd want me there one or two days a week. I'm a freelance graphic artist and, right now, providing for my wife and I is a priority.
Dr Roschewski said what other doctors have said. I'm smoldering, no need to jump into anything.
I went to NIH to be involved in the Natural Progression study. I also felt that I would have an inside track to any drug trials if I was interested.
I didn't meet Dr. Landgren but, Dr Roschewski was very informative. At the time of our meeting we didn't have any of my test results other than CBC. I'm hoping to hear from them within the week.
Dr Roschewski confirmed my reasoning for going to NIH as far as drug trials. He said if I didn't want to participate in something "more aggressive" like the Carfilzomib trial, there will be other less intense trials coming up.
I did learn that NIH's criteria for high risk isn't the same as other institutions.
My gut feeling is to go with the BHQ880 trial with Dr. Jagannath at Mt. Sinai. I like the idea of preserving my bones while possibly holding off the progression of the Myeloma cells in the marrow.
The Carfilzomib trial at NIH would be to demanding right now as I'd have to travel back and forth from NYC on a weekly basis. They'd want me there one or two days a week. I'm a freelance graphic artist and, right now, providing for my wife and I is a priority.
Dr Roschewski said what other doctors have said. I'm smoldering, no need to jump into anything.
-
Stan W. - Name: Stan
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: SMM-April 2012
- Age at diagnosis: 58
42 posts
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