I have suffered from Ulcerative Colitis for 21 years. Almost died in childbirth with 1st child, went on to have 7 miscarriages but was blessed with a 2nd child. Had a total thyroidectomy Spring 2012. Endocrinologist found protein (very little) in my urine. Put me on a BP pill which stopped it. However my GI doctor sent me to a Nephrologist to find out why there was albumin in my urine. This Nephrologist listened to me. I have had numb hands and feet, restless legs and extreme exhaustion for months. He did multiple blood and urine tests and found I have high elevated IgA protein and elevated kappa light chains and a high kappa/lambda ratio. He sent me to a Hematologist who also did multiple tests - blood, skeletal survey and bone marrow biopsy. He found that my Hbg was 6 and my Ferritin was 5 so he sent me for Iron injections which helped greatly.
Yesterday I was told I Multiple Myeloma and that my pituitary gland is enlarged. Now we are doing a 24 hour urine and he will be scheduling more tests.
I am a fighter so I plan to fight this as well. What can I do for my family? Though I tried to play it down, my sons are a mess and my husband is non-functional.
I welcome any suggestions. I didn't get much information from the Hematologist yesterday, he gave me some xeroxed docs to look over and told me about this site. I am in NorthWest NJ, does anyone know of a center that specializes in Myeloma? I want to get a 2nd opinion. I exhibit no symptoms of multiple myeloma so I'm hopeful its Smoldering? This is all still so new to me, I want to learn as much as I can. Thank you in advance.
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californiagal - Name: californiagal
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Sept 11, 2013
- Age at diagnosis: 52
Re: Newly Diagnosed Yesterday
Hi californiagal,
Sorry to hear about your diagnosis, but, like you said, hopefully it's just smoldering myeloma with a very low risk of progression to active myeloma.
In terms of centers close to you, there are the centers in New York City as well as the John Theurer Center (Hackensack). Also, if Philly is an option, there's the Abramson Center at Penn.
Also bear in mind that the National Cancer Institute in Washington may turn out to be a good option. They are running a number of trials there that could end up being good options for you. But they won't be relevant for a second opinion, I suspect. Maybe a third opinion.
As far as what to tell your family, one thing I would suggest is that you tell them that it is way too soon for anyone to be jumping to conclusions. If, for example, you have smoldering myeloma, it may not ever progress to active myeloma. And even if you have active myeloma, life expectancy is constantly improving, with many, many myeloma patients living for a long, long time after their diagnosis.
Sorry to hear about your diagnosis, but, like you said, hopefully it's just smoldering myeloma with a very low risk of progression to active myeloma.
In terms of centers close to you, there are the centers in New York City as well as the John Theurer Center (Hackensack). Also, if Philly is an option, there's the Abramson Center at Penn.
Also bear in mind that the National Cancer Institute in Washington may turn out to be a good option. They are running a number of trials there that could end up being good options for you. But they won't be relevant for a second opinion, I suspect. Maybe a third opinion.
As far as what to tell your family, one thing I would suggest is that you tell them that it is way too soon for anyone to be jumping to conclusions. If, for example, you have smoldering myeloma, it may not ever progress to active myeloma. And even if you have active myeloma, life expectancy is constantly improving, with many, many myeloma patients living for a long, long time after their diagnosis.
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JimNY
Re: Newly Diagnosed Yesterday
Thank you so much for your reply. This all obviously so new to me and I appreciate it. I could travel to any of those centers easily. One of my co-workers just texted me that there is a center in Basking Ridge, NJ? I'll have to look that up as well, its probably 15 min from my home. Again, thank you.
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californiagal - Name: californiagal
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Sept 11, 2013
- Age at diagnosis: 52
Re: Newly Diagnosed Yesterday
The Basking Ridge center is, I believe, a satellite center of Sloan Kettering. I don't know if the physicians you'll see there, however, are as experienced as those you would see at Sloan-Kettering in New York City (or, for that matter, at the John Theurer Center in Hackensack).
You can find a list of myeloma treatment centers here:
https://myelomabeacon.org/treatment-centers/
You can find a list of myeloma treatment centers here:
https://myelomabeacon.org/treatment-centers/
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JimNY
Re: Newly Diagnosed Yesterday
Hi californiagal
I was diagnosed with smoldering myeloma in 2002 at age 62 and was completely taken aback as I had never even heard of the disease and was merely going for a physical at the insistence if my kids as I had not had one in years. I had absolutely no symptoms and was feeling well, so I can relate to the confusion you must be feeling. I did get a second opinion from Hackensak University Medical Center in Hackensack - they were great - very knowledgeable about the disease - and its where I would have gone for stem cell transplant had it been necessary. They have also run some clinical trials there over the years. Everyones attitude at the time was wait and watch which we have done for the past 11 years. Recently my numbers have put me in the high risk category for advancing to active myeloma and my oncologist has recommended I consider the early intervention protocol recently published in the New England Journal of Medicine. I am considering it even though to this date I have not experienced any physical symptoms. Hope this helps.
I was diagnosed with smoldering myeloma in 2002 at age 62 and was completely taken aback as I had never even heard of the disease and was merely going for a physical at the insistence if my kids as I had not had one in years. I had absolutely no symptoms and was feeling well, so I can relate to the confusion you must be feeling. I did get a second opinion from Hackensak University Medical Center in Hackensack - they were great - very knowledgeable about the disease - and its where I would have gone for stem cell transplant had it been necessary. They have also run some clinical trials there over the years. Everyones attitude at the time was wait and watch which we have done for the past 11 years. Recently my numbers have put me in the high risk category for advancing to active myeloma and my oncologist has recommended I consider the early intervention protocol recently published in the New England Journal of Medicine. I am considering it even though to this date I have not experienced any physical symptoms. Hope this helps.
Re: Newly Diagnosed Yesterday
Californiagal,
I read your post and I know what you're going through.My wife at 54 went through almost the identical situation 3 years ago.She had Hashimoto's disease and they found an m spike in her blood.I won't get into all the tests, but we went to the John Theurer Cancer Center in Hackensack.I would suggest trying to get a second opinion there. My wife's myeloma specialist Dr David Siegel is one of the best in the world.Right from the very beginning he was thorough,thoughtful,and informative.His whole staff is great. I went through the same thing your husband is going through. No sleep,depressed and could not focus. It will get better with time and hopefully after your tests you will know exactly what your up against. By the way my wife is still smoldering after 3 years. Good luck and keep us posted on your progress.
I read your post and I know what you're going through.My wife at 54 went through almost the identical situation 3 years ago.She had Hashimoto's disease and they found an m spike in her blood.I won't get into all the tests, but we went to the John Theurer Cancer Center in Hackensack.I would suggest trying to get a second opinion there. My wife's myeloma specialist Dr David Siegel is one of the best in the world.Right from the very beginning he was thorough,thoughtful,and informative.His whole staff is great. I went through the same thing your husband is going through. No sleep,depressed and could not focus. It will get better with time and hopefully after your tests you will know exactly what your up against. By the way my wife is still smoldering after 3 years. Good luck and keep us posted on your progress.
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Joe c
Re: Newly Diagnosed Yesterday
Thanks for all the replies, helped cleared up many of my personal questions as well... As a point of fact, I have no symptoms either... My IGG is 4010; IGA is 7 and IGM is 7.....B2 MICROGLOB is 4.6 and Lambda is 11.80 anyone want to comment? My Doctor is starting me on Revlimid 25mg....... Would appreciate some clarification...... no other symptoms at all everything is clear.......
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Gonzo - Name: Chris (Gonzo)
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: September 10, 2013
- Age at diagnosis: 62
Re: Newly Diagnosed Yesterday
The cancer center in Basking Ridge may not have a Myeloma specialist. For a 2nd opinion you want to see a Myeloma specialist. I would suggest that you go to Hackensack since it would be the closest to you. Then, if you still feel that you need another opinion Sloan Kettering or Mt. Sinai in NYC or Abramson at the University of Pennsylvania in Philadelphia would be the next best options.
It is quite common for people to be treated by a local oncologist who is consulting with an multiple myeloma specialist who you see a couple of times a year. This way you don't have to travel for treatment and blood work on a regular basis. Make sure that you have an multiple myeloma specialist on your team no matter where you go for treatment.
There is a lot to learn, but you and your family will get through this initial stage and move on with life. Call or email the International Myeloma Foundation, IMF, for information about any aspect of this disease and treatment. They can also help you locate an multiple myeloma specialist and tell you where the nearest support group is to where you live. The support groups are an incredible way to learn about this disease and to meet people in all stages of treatment. There are people who are newly diagnosed, like you, and people who have been living with this disease for many years. I know that that was really helpful to me to meet people who had been living 20 years with this disease.
The best to you and your family from a former Morristonian,
Nancy in Phila
It is quite common for people to be treated by a local oncologist who is consulting with an multiple myeloma specialist who you see a couple of times a year. This way you don't have to travel for treatment and blood work on a regular basis. Make sure that you have an multiple myeloma specialist on your team no matter where you go for treatment.
There is a lot to learn, but you and your family will get through this initial stage and move on with life. Call or email the International Myeloma Foundation, IMF, for information about any aspect of this disease and treatment. They can also help you locate an multiple myeloma specialist and tell you where the nearest support group is to where you live. The support groups are an incredible way to learn about this disease and to meet people in all stages of treatment. There are people who are newly diagnosed, like you, and people who have been living with this disease for many years. I know that that was really helpful to me to meet people who had been living 20 years with this disease.
The best to you and your family from a former Morristonian,
Nancy in Phila
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: Newly Diagnosed Yesterday
All of the advice you have received is great, and John Theurer, and Memorial Sloan Kettering are highly respected multiple myeloma treatment centers.
The most important point that can be made is that a multiple myeloma specialist provided the best possible probability of a longer life expectancy.
Gary
The most important point that can be made is that a multiple myeloma specialist provided the best possible probability of a longer life expectancy.
Gary
Re: Newly Diagnosed Yesterday
I took your wonderful advice and I now have an appointment with a Myeloma Oncologist at Sloan-Kettering in 2 weeks. My current Hematologist confirmed I have Smoldering Myeloma. He doesn't recommend any treatment and wants to do blood tests every 6 weeks. Curious whether S-K agrees with his recommendation....
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californiagal - Name: californiagal
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Sept 11, 2013
- Age at diagnosis: 52
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