Hi!
I'm very glad to have found this Forum. It looks as if there can be powerful help found here.
About a week or so ago, I had X-rays of both shoulders. When the radiologist's report arrived, it stated some very bad news: "there are focal areas of bone loss demonstrating a lytic pattern within the scapula and humerus", and then stated "IMPRESSION: Lytic foci worrisome for multiple myeloma."
I am in the process of getting blood tests done to see where I'm at with this thing. I know the X-rays don't lie; I now need to find out what my chances are. The results should be available before the end of this week.
There are 2 apparently very well thought of treatment centers here in Southern California, Cedars Sinai, and City of Hope. I may wind up quickly looking into these.
At any rate, I'm happy to make your acquaintance(s) ... looking forward to talking with y'all!
Robert
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4 posts
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yorkere - Name: Robert E. Yorke
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: October 2014
Re: Just discovered this forum!
Hello Dear Friend,
Do not panic! Most of us have been through your experience and you will understandably be feeling somewhat shellshocked. Multiple myeloma is usually a slow moving disease, you have probably had it in your system for some time and not realised it.
Most of the new treatments are very effective and can hold the condition in check for years, hopefully until a 'cure' is found. The treatments are usually injections and capsules, the latter taken at home. Some people have stem cell transplants after several months of treatment; I personally decided to keep that option for the future as I responded very well to the Velcade and Revlimid treatment. This was three years ago and I have been without treatment for the past two years. To be perfectly honest, Robert, I would not really know that I had anything wrong.
Please listen to your specialists and follow what you feel to be the best protocol for your personal needs – no two people are the same. Many people are still talking about their myeloma diagnosis five or ten years later, survival is generally measured in years and often a lot of years. You will (hopefully) be surprised at how well you do, if and when treatment commences.
Very Kind Regards and keep searching in 'The Beacon'! From Ian in France.
Do not panic! Most of us have been through your experience and you will understandably be feeling somewhat shellshocked. Multiple myeloma is usually a slow moving disease, you have probably had it in your system for some time and not realised it.
Most of the new treatments are very effective and can hold the condition in check for years, hopefully until a 'cure' is found. The treatments are usually injections and capsules, the latter taken at home. Some people have stem cell transplants after several months of treatment; I personally decided to keep that option for the future as I responded very well to the Velcade and Revlimid treatment. This was three years ago and I have been without treatment for the past two years. To be perfectly honest, Robert, I would not really know that I had anything wrong.
Please listen to your specialists and follow what you feel to be the best protocol for your personal needs – no two people are the same. Many people are still talking about their myeloma diagnosis five or ten years later, survival is generally measured in years and often a lot of years. You will (hopefully) be surprised at how well you do, if and when treatment commences.
Very Kind Regards and keep searching in 'The Beacon'! From Ian in France.
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Ian Forsyth
Re: Just discovered this forum!
Hi Robert,
I'm glad you found the Myeloma Beacon too. I hope your blood tests do not indicate multiple myeloma, but just in case they do, I'd like to add just a bit to the good welcome and advice that Ian gave you.
First, it is very important that you get treated by a myeloma specialist because myeloma is a complex disease and because there are new treatment advances happening rapidly. You want to be treated by someone who sees lots of myeloma patients and who lives and breathes this stuff (like we patients do).
Second, in addition to Cedars Sinai and City of Hope, you might also consider the UCLA (my alma mater!!) and USC Medical Centers, as well as UC Irvine, if you live down in that area. Here, from another section of the Beacon's website, is a list of California myeloma centers:
https://myelomabeacon.org/resources/treatment-centers/#California
Best of luck to you, and please let us know how your blood tests turn out.
Mike
I'm glad you found the Myeloma Beacon too. I hope your blood tests do not indicate multiple myeloma, but just in case they do, I'd like to add just a bit to the good welcome and advice that Ian gave you.
First, it is very important that you get treated by a myeloma specialist because myeloma is a complex disease and because there are new treatment advances happening rapidly. You want to be treated by someone who sees lots of myeloma patients and who lives and breathes this stuff (like we patients do).
Second, in addition to Cedars Sinai and City of Hope, you might also consider the UCLA (my alma mater!!) and USC Medical Centers, as well as UC Irvine, if you live down in that area. Here, from another section of the Beacon's website, is a list of California myeloma centers:
https://myelomabeacon.org/resources/treatment-centers/#California
Best of luck to you, and please let us know how your blood tests turn out.
Mike
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mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
Re: Just discovered this forum!
Ian Forsyth and mikeb,
Thanks so much for your replies.
Mikeb, I do intend looking into the other centers out here. I live in Riverside, CA. I should know something about my status by the end of this week. Then maybe try to discuss things with my regular doctor.
Ian, many thanks for your words of encouragement!
I do intend responding again in the near future, when test results have been made available.
Robert
Thanks so much for your replies.
Mikeb, I do intend looking into the other centers out here. I live in Riverside, CA. I should know something about my status by the end of this week. Then maybe try to discuss things with my regular doctor.
Ian, many thanks for your words of encouragement!
I do intend responding again in the near future, when test results have been made available.
Robert
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yorkere - Name: Robert E. Yorke
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: October 2014
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