Hi...My name is Amber and I am 38 years old. I have a very supportive and wonderful Husband named Wes and 4 amazing children...a 9 yr. old son (Jy), an 8 yr. old daughter (Abbey), a 4 yr. old son (Wyatt) and an almost 2 yr. old son (Jed) and we have had an emotional year. I am feeling a bit flustered as my Dr.'s seem to be confused by my condition and not really sure what to do with me right now.. 1st I was told M-GUS, then it is Smoldering Multiple Myeloma but because of my recent jumps in numbers it could be progressing...I am wondering if any of you could possibly give out some opinions or insights?? Thanks so much!
1 1/2 years ago (3/17/2011) I was diagnosed with Stage I Chronic Kidney Disease, with readings of
Hemoglobin 13
Protein 2+
Blood 2+
Albumin 4.2
serum creatinine 0.7
protein/creatinine ratio 1.6
ALT (SGPT) 42
4/15/2011
Calculated Beta 1.55
Beta% 20.1
Gamma% 7.9
Immuglobulin G 619
Immuglobulin A 832
comment (IGA M protein with kappa light chain)
kappa light chains 67.12
lambda light chains 7.45
kappa/lambda ratio 9.01
M-spike mg/24hr 996
protein total urine 285.9
protein urine 24hr 2501.6
4/26/2011
normal bone survey
5/10/2011
Bone Marrow Biopsy 2% Abnormal plasma
8/16/2011
Bone Marrow Biopsy
Hemoglobin 12.2
10.4% abnormal Plasma in one core
20-25% abmornal plasma in another core
mild normocytic anemia
Rouleaux formation increased
1/17/2012
calculated beta 1.47
calculated gamma 0.53
beta % 20.7
gamma% 7.4
paraprotein% 9.0
calculated paraprotein 0.6
immunofixation (qualitative) positive
kappa IgA peak
WBC 4.6
hemoglobin 13
kapp light chains 112.20
lambda lt chains 3.04
kappa/lambd ratio 36.91
protein/creatinine ratio 0.9
3/22/2012
RDW-CV 11.2
WBC 4.2
hemoglobin 12.9
kappa lt chains 228.93
lambda lt chains 2.73
kappa/lambda ratio 83.86
calculated beta 1.54
beta% 21.7
gamma% 8.4
paraprotein% 8.7
calculated papraprotein 0.6
It seems as if I get more tired as each week passes and I have so many bruises i do not remember getting and I feel very foggy in the brain, I am having to write all things down and I have lots of pains in my back and arms...i do have herrington rods due to severe scoliosis!!! Thanks so much for your interest and help!!
Forums
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jyambey - Name: Amber
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: April 2011
- Age at diagnosis: 37
Re: They just dont know what to do with me...
Hi, hopefully, a doctor will comment on your case. You mentioned kidney disease in the first part of your post but listed your serum creatinine as .70 which, I believe, is quite good. What is your kidney problem based on then??? You may want to get a work up for free at the NIH which has a special study of MGUS, Smoldering myeloma, etc. The doctor is Ola Landgren. Go to their site on the NIH/NCI website and email them or him. They can schedule you for an eval. Most costs are covered and there is no charge. In other words, there is no reason in the world for you not to call! Do it now for your own peace of mind. If anyone can sort out your actual diagnosis, it is Dr. Landgren. He is an internationally known expert. in all things myeloma. Good luck. I will keep you and your family in my prayers. Terry
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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: They just dont know what to do with me...
Terry~
I believe they based my kidney problem on the 2+ Proteins...at one point I heard Proteinuria (sp).
I will definitely go check the website out and check into the evaluation...Thanks so much!!! God Bless you and yours!
I believe they based my kidney problem on the 2+ Proteins...at one point I heard Proteinuria (sp).
I will definitely go check the website out and check into the evaluation...Thanks so much!!! God Bless you and yours!
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jyambey - Name: Amber
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: April 2011
- Age at diagnosis: 37
Re: They just dont know what to do with me...
Did you do a 24 hour urine screen for Myeloma proteins (m-spike) it is different than the more common "protein" in the urine. Myeloma Kidney disease is a distinct type of kidney disease caused by the light chains in your urine that are a result from myeloma.
I'm not an expert on blood work, but some of yours looks pretty good to me (hemoglobin, white count etc.)
I'm not an expert on blood work, but some of yours looks pretty good to me (hemoglobin, white count etc.)
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lys2012 - Name: Alyssa
- When were you/they diagnosed?: 2010, Toronto, Canada
- Age at diagnosis: 32
Re: They just dont know what to do with me...
Lys2012~
Thanks for your input...I will go and check what paperwork I do have on my 24 hr. test!!! Again thanks!
Thanks for your input...I will go and check what paperwork I do have on my 24 hr. test!!! Again thanks!
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jyambey - Name: Amber
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: April 2011
- Age at diagnosis: 37
Re: They just dont know what to do with me...
HI Lyambey!!
It looks like between April of last year and March of this year, you had a significant increase in your kappa light chains, almost 3 fold increase.
I recall reading that increases in light chains are a criteria indicative of moving from smoldering to multiple myeloma.
You didn't say what part of the country you are in..but I agree with TerryH...call Dr. Langren @ NIH and schedule a consult.
You will not be disappointed.
It looks like between April of last year and March of this year, you had a significant increase in your kappa light chains, almost 3 fold increase.
I recall reading that increases in light chains are a criteria indicative of moving from smoldering to multiple myeloma.
You didn't say what part of the country you are in..but I agree with TerryH...call Dr. Langren @ NIH and schedule a consult.
You will not be disappointed.
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suzierose - Name: suzierose
- When were you/they diagnosed?: 2 sept 2011
Re: They just dont know what to do with me...
Suzierose~
Thanks for your input also!! I am in Minnesota. I did go to the website to check things out. I believe I read this place is in Maryland!? I could try checking into a summer appointment as we just could not afford the trip at this time although I realize my health is also very important!! I wonder if the Mayo Clinic is as good...as that is 2-3 hours away!! Again Thanks so much to all of you!
Thanks for your input also!! I am in Minnesota. I did go to the website to check things out. I believe I read this place is in Maryland!? I could try checking into a summer appointment as we just could not afford the trip at this time although I realize my health is also very important!! I wonder if the Mayo Clinic is as good...as that is 2-3 hours away!! Again Thanks so much to all of you!
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jyambey - Name: Amber
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: April 2011
- Age at diagnosis: 37
Re: They just dont know what to do with me...
Amber,
NIH is Definitely worth the trip.I went there and I am in the Midwest,(Chicago area). They do have some studies going on and if you qualify/participate they do reimburse for travel and hotel. They have good transportation to/from Airport and Hotels so that is not an issue. Their staff is Great and Dr Landgren is an amazing individual. It does take a bit of time to get the Ball rolling as they are very busy.
One other advantage is once you walk into the Doors of NIH Money is no good, it wont cost you a dime, they dont even ask for insurance.
Mayo is also very good and I think most would agree you, I think its all in who you see wherever you go. Rajkumar is a well known expert and is colleagues with Dr. Landgren (or so i was told by Dr Landgrens Nurse).
In either case, I am sure you will get good care and advice.
Good Luck and Gods blessings
Art
NIH is Definitely worth the trip.I went there and I am in the Midwest,(Chicago area). They do have some studies going on and if you qualify/participate they do reimburse for travel and hotel. They have good transportation to/from Airport and Hotels so that is not an issue. Their staff is Great and Dr Landgren is an amazing individual. It does take a bit of time to get the Ball rolling as they are very busy.
One other advantage is once you walk into the Doors of NIH Money is no good, it wont cost you a dime, they dont even ask for insurance.
Mayo is also very good and I think most would agree you, I think its all in who you see wherever you go. Rajkumar is a well known expert and is colleagues with Dr. Landgren (or so i was told by Dr Landgrens Nurse).
In either case, I am sure you will get good care and advice.
Good Luck and 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: They just dont know what to do with me...
Hi Amber!!,
Yes, NIH is in Bethesda, Md, right outside DC, about 40 mins. Walter Reed hospital is located on NIH campus now.
The Mayo clinic has been a national premiere center for over 50 years when it comes to multiple myeloma therapy.
You can't go wrong getting therapy there. The top multiple myeloma experts there are Kyle Anderson, Vincent Rajkumar, and Martha Lacy...that I can recall off top of my head.
I am partial to NIH because they are our world class health care system. Always on top of newest and most cutting edge therapy. In my case that meant they had carfilzomib trial for multiple myeloma. Additionally, the physician running the trial is the #3 expert in the world for multiple myeloma.
I went to Mayo for consult.
Mayo has pomalidomide trial. My belief was that carfilzomib was better than bortizemib as far as efficacy and side effects. The fact that carfilzomib was irreversible inhibitor vs. bortezomib being reversible, meant less likely resistance and carfilzomib has far less PN than bortezomib. Whereas, pomalidomide is a myelosuppressive agent that is 5x as potent as lenalidomide. My rationale was that I was getting greater efficacy with carilzomib but greater risk of myelosuppression with pomalidomide. Also there was lots of unconfirmed information that lenalidomide caused secondary primary malignancies at that time, which has since been confirmed, based on label changes. Ergo, with pomalidomide being 5x as strong I was not optimistic about being on it. So, I opted to come to NIH for carfilzomib instead.
I also have to concur with all that Art posted to you.
Choosing between Mayo and NIH you will get the quality of care you need. Make your appointment and ride on down to Mayo. You will receive excellent care.
It will probably be difficult (take a long time), but I would see Rajkumar, like Art mentioned as well. My rationale for that choice is that he believes, like me, thattQOL is a top priority, when dealing with an incurable diseasel, particularly when it comes to tough choices for therapy.
Wishing you all the best.
Yes, NIH is in Bethesda, Md, right outside DC, about 40 mins. Walter Reed hospital is located on NIH campus now.
The Mayo clinic has been a national premiere center for over 50 years when it comes to multiple myeloma therapy.
You can't go wrong getting therapy there. The top multiple myeloma experts there are Kyle Anderson, Vincent Rajkumar, and Martha Lacy...that I can recall off top of my head.
I am partial to NIH because they are our world class health care system. Always on top of newest and most cutting edge therapy. In my case that meant they had carfilzomib trial for multiple myeloma. Additionally, the physician running the trial is the #3 expert in the world for multiple myeloma.
I went to Mayo for consult.
Mayo has pomalidomide trial. My belief was that carfilzomib was better than bortizemib as far as efficacy and side effects. The fact that carfilzomib was irreversible inhibitor vs. bortezomib being reversible, meant less likely resistance and carfilzomib has far less PN than bortezomib. Whereas, pomalidomide is a myelosuppressive agent that is 5x as potent as lenalidomide. My rationale was that I was getting greater efficacy with carilzomib but greater risk of myelosuppression with pomalidomide. Also there was lots of unconfirmed information that lenalidomide caused secondary primary malignancies at that time, which has since been confirmed, based on label changes. Ergo, with pomalidomide being 5x as strong I was not optimistic about being on it. So, I opted to come to NIH for carfilzomib instead.
I also have to concur with all that Art posted to you.
Choosing between Mayo and NIH you will get the quality of care you need. Make your appointment and ride on down to Mayo. You will receive excellent care.
It will probably be difficult (take a long time), but I would see Rajkumar, like Art mentioned as well. My rationale for that choice is that he believes, like me, thattQOL is a top priority, when dealing with an incurable diseasel, particularly when it comes to tough choices for therapy.
Wishing you all the best.
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suzierose - Name: suzierose
- When were you/they diagnosed?: 2 sept 2011
Re: They just dont know what to do with me...
Art and Suzierose~
I think that I will start with Mayo and get the answers I need (meaning, where am I in the disease?) My local Dr. asked my Dr. at the U of M what my progression means and we have not heard from the U of M for nearly 3 months with an answer, my local Dr. thinks that treatment should probably be started but he likes to confer with the U...so it seems to always be a waiting game in my case! Again Thanks and i feel blessed to have gotten to hear from you all! Prayers out to you all!
I think that I will start with Mayo and get the answers I need (meaning, where am I in the disease?) My local Dr. asked my Dr. at the U of M what my progression means and we have not heard from the U of M for nearly 3 months with an answer, my local Dr. thinks that treatment should probably be started but he likes to confer with the U...so it seems to always be a waiting game in my case! Again Thanks and i feel blessed to have gotten to hear from you all! Prayers out to you all!
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jyambey - Name: Amber
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: April 2011
- Age at diagnosis: 37
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