Hi everyone,
This is my first post on the Beacon, although I have been an avid follower for the last fifteen months and I have learned so much!
I have been a Bence Jones Protein, kappa free light chain smolderer until recently, but I believe based on my last visit with my oncologist, that my world is about to change and for the second time in a little over a year, I am feeling overwhelmed and scared.
Since my diagnosis in June of 2014 at age 56, my kappa free light chains remained consistently in the 600's until April when they jumped, inexplicably, to 962.67. My kappa lambda ratio had been under 100 until that time but in April was 103.40. I thought for sure I would have to begin treatment then based upon the new Myeloma Defining Event criteria, but my doctor said it was one data point and that all my other markers were very low and he would keep an eye on my ratio. My kidney function is normal and I drink lots of water to try to keep it that way. He also wanted me to have another skeletal survey because it had been a year since my first one. The first survey was free of lytic lesions.
I had to postpone my July visit by a couple of weeks due to a yard work injury that I was on medications for and I wanted to make sure they were out of my system prior to drawing labs. Anyway, when I went in for my visit, I learned that my kappa free light chains were 987.86 and the kappa lambda ratio was 104.87, so no statistical difference from my April results, BUT my skeletal survey showed a "new small rounded lucency in the parietal region of the skull on the lateral view and a new small 5 multiple myeloma lucency in the mid shaft of the humerus. No other lucent lesion is identified." "Impression: new small rounded lucencies in the skull and left humerus as described. Early changes of multiple myeloma not excluded." I should also mention that I have had osteopenia since 2004 - my mom had osteoporosis; I went through early menopause; I am small framed and unfortunately, a former smoker (quit in 2000). In 2014, my bone density showed osteoporosis (barely) in my lumbar spine. My GP changed my meds from generic Alendronate to Fosamax 70 mg once a week and I am due for another bone density test in January.
So, my oncologist said he wanted to do another bone marrow biopsy, which is scheduled for this Friday the 18th. My first biopsy in June of last year showed 20% plasma cell involvement with no high risk chromosome abnormalities. He also discussed sending me to a myeloma specialist and that I may have to start induction therapy in preparation for a stem cell transplant. Truthfully, my husband and I were stunned. There are so many new drug therapies I've read about, I guess I thought maybe an ASCT would be in my future, but not now. With that in mind, I feel it is important to see a top specialist for their opinion on my treatment plan.
So the main thing that is mostly keeping me awake at night is this - which specialist should I see? I'm fortunate enough to have out of area coverage through my insurance. I live in Virginia, but I'm willing to go to MD Anderson, Memorial Sloan Kettering, Dana Farber, or Mayo. I've read the bios of Dr. Orlowski, Dr. Landgren, Dr.s Anderson and Richardson, and Dr. Rajkumar and I've watched many of their videos. They are all brilliant specialists, so how do I choose? I would really appreciate any advice you can provide or other specialist recommendations. I doubt there is a particular specialist who has a focus on light chain only myeloma since it only represents about 10% of the myeloma population.
Other questions:
1. How fast do these new skeletal "lucencies" grow"? Is a lucency the same thing as a lytic lesion? Should I be put on Zometa right away? Can I even take Zometa since I've been taking Fosamax?
2. Should I request a whole body MRI for focal lesions or is it assumed that I will have them since I have two lucencies?
3. I've read recently about MyPRS (Myeloma Prognostic Risk Signature). Is this something I should ask my oncologist to request when he submits my bone marrow and aspirate to pathology?
Well, that's it... Thank you so much for taking time to read this. I realize it is lengthy, but I greatly appreciate any insight, advice, or recommendations from this awesome community of folks!
Forums
-
Tess - Name: Tess
- Who do you know with myeloma?: Myself - Smoldering
- When were you/they diagnosed?: June 2014
- Age at diagnosis: 56
Re: Kappa Free Light Chain Myeloma
Tess,
Your main decision is which location with myeloma experts to go to. Your 1-3 questions will be addressed by them. I, too, have kappa light chain myeloma. Nothing in your description sounds too bad. You are at a very early phase and have lots of treatment options available.
But you definitely need to see a myeloma expert to figure out the next step. All the MDs you mentioned are brilliant specialists, but remember you may not end up seeing those individuals. There are other MDs on their staffs who are also myeloma experts, and you may end up seeing them.
Every medical location you mentioned is excellent, so, if it was me, I would make the decision based on where I want to spend time. If you are happy with your care, you will be making regular trips there in future years. In my case, for the last five years I have been travelling to UAMS in Little Rock at least once/year. I get excellent care there, from top-notch myeloma specialists. But, if I was starting over, I might go to Mayo AZ or UCSF or Seattle which would be much more convenient and pleasant for me.
Good luck
David
Your main decision is which location with myeloma experts to go to. Your 1-3 questions will be addressed by them. I, too, have kappa light chain myeloma. Nothing in your description sounds too bad. You are at a very early phase and have lots of treatment options available.
But you definitely need to see a myeloma expert to figure out the next step. All the MDs you mentioned are brilliant specialists, but remember you may not end up seeing those individuals. There are other MDs on their staffs who are also myeloma experts, and you may end up seeing them.
Every medical location you mentioned is excellent, so, if it was me, I would make the decision based on where I want to spend time. If you are happy with your care, you will be making regular trips there in future years. In my case, for the last five years I have been travelling to UAMS in Little Rock at least once/year. I get excellent care there, from top-notch myeloma specialists. But, if I was starting over, I might go to Mayo AZ or UCSF or Seattle which would be much more convenient and pleasant for me.
Good luck
David
-
Arizonan - Name: Arizonan
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: April 2010
- Age at diagnosis: 54
Re: Kappa Free Light Chain Myeloma
David,
Thank you so much for your response. It was very reassuring and you made excellent points, especially about frequency of visits and spending time at whatever location I choose. You also answered one of the questions that has been lingering in the back of my mind about whether or not I would actually get to see one of the specialists mentioned, or would it be another expert on their staff.
I'm curious, did you have tandem transplants at UAMS? My doctor mentioned that treatment center specifically, but I read that they prefer to treat outpatient unless it's medically necessary to be hospitalized and I couldn't understand how that's done. I understand they have one of the highest success rates though.
Hope you're doing well!
Cheers,
Tess
Thank you so much for your response. It was very reassuring and you made excellent points, especially about frequency of visits and spending time at whatever location I choose. You also answered one of the questions that has been lingering in the back of my mind about whether or not I would actually get to see one of the specialists mentioned, or would it be another expert on their staff.
I'm curious, did you have tandem transplants at UAMS? My doctor mentioned that treatment center specifically, but I read that they prefer to treat outpatient unless it's medically necessary to be hospitalized and I couldn't understand how that's done. I understand they have one of the highest success rates though.
Hope you're doing well!
Cheers,
Tess
-
Tess - Name: Tess
- Who do you know with myeloma?: Myself - Smoldering
- When were you/they diagnosed?: June 2014
- Age at diagnosis: 56
Re: Kappa Free Light Chain Myeloma
Hi Tess,
Welcome to the Beacon, as a poster. I'm glad you feel like you've learned a lot already from the Beacon community. And I bet before long we'll be learning from you.
And I certainly can understand how your recent test results and your doctor's suggestions have you and your husband pretty concerned. I remember that when I got the news that I had moved from smoldering to symptomatic that it was quite a jolt, even though I sort of expected it to happen sometime.
As David said, it sounds like even if you do need treatment soon, your myeloma is in an early stage, so that is good. And that means you have some time to do a little more research before starting treatment, if you want. By that I mean that you could call 2 or more of the myeloma centers on your list, see which doctor you would work with at each of those places, meet with the doctors, and choose based on who you are most comfortable with.
Two other good places to also consider that would probably be closer to you geographically would be NIH outside of DC and Johns Hopkins in Baltimore.
Finally, I might mention that I am being treated at Memorial Sloan Kettering and have been very pleased with the care I've gotten there.
Best wishes to you. Please keep us up to date on your decisions and how things go for you, now that you've joined the Beacon poster family.
Mike
Welcome to the Beacon, as a poster. I'm glad you feel like you've learned a lot already from the Beacon community. And I bet before long we'll be learning from you.
And I certainly can understand how your recent test results and your doctor's suggestions have you and your husband pretty concerned. I remember that when I got the news that I had moved from smoldering to symptomatic that it was quite a jolt, even though I sort of expected it to happen sometime.
As David said, it sounds like even if you do need treatment soon, your myeloma is in an early stage, so that is good. And that means you have some time to do a little more research before starting treatment, if you want. By that I mean that you could call 2 or more of the myeloma centers on your list, see which doctor you would work with at each of those places, meet with the doctors, and choose based on who you are most comfortable with.
Two other good places to also consider that would probably be closer to you geographically would be NIH outside of DC and Johns Hopkins in Baltimore.
Finally, I might mention that I am being treated at Memorial Sloan Kettering and have been very pleased with the care I've gotten there.
Best wishes to you. Please keep us up to date on your decisions and how things go for you, now that you've joined the Beacon poster family.
Mike
-
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: Kappa Free Light Chain Myeloma
Hi Mike,
Thank you so much for your warm welcome to the Beacon and for your thoughtful reply. I appreciate the additional recommendations for NIH and Johns Hopkins as well and I will look into them. It eases my mind a bit that I may have a little more time to make a more informed decision and perhaps meet with a couple of the doctors, as you suggested. May I ask who you see at Memorial Sloan Kettering?
I also forgot to mention that all three of my immunoglobulins are low - IgA result <6, IgG result 298 and IgM result <6. So far, I have not had any major infections but I'm very susceptible to upper respiratory issues (sinus, colds, bronchitis, etc.). I just try to avoid people who are obviously sick, wash my hands a lot, etc. When I learn the results of my upcoming BMB, I will post an update.
All the best to you!
Cheers,
Tess
Thank you so much for your warm welcome to the Beacon and for your thoughtful reply. I appreciate the additional recommendations for NIH and Johns Hopkins as well and I will look into them. It eases my mind a bit that I may have a little more time to make a more informed decision and perhaps meet with a couple of the doctors, as you suggested. May I ask who you see at Memorial Sloan Kettering?
I also forgot to mention that all three of my immunoglobulins are low - IgA result <6, IgG result 298 and IgM result <6. So far, I have not had any major infections but I'm very susceptible to upper respiratory issues (sinus, colds, bronchitis, etc.). I just try to avoid people who are obviously sick, wash my hands a lot, etc. When I learn the results of my upcoming BMB, I will post an update.
All the best to you!
Cheers,
Tess
-
Tess - Name: Tess
- Who do you know with myeloma?: Myself - Smoldering
- When were you/they diagnosed?: June 2014
- Age at diagnosis: 56
Re: Kappa Free Light Chain Myeloma
Tess,
I only did one transplant due to problems with my kidneys. The UAMS outpatient system is to the patient's benefit. You stay in a hotel or apt while there. I could never have done a stem cell transplant if it was an inpatient procedure. I dont mind hospitals during the day, but I hate being there at night.
UAMS has a very aggressive approach to treating newly diagnosed myeloma. They have a lot of success, but the approach is not for everyone.
David
I only did one transplant due to problems with my kidneys. The UAMS outpatient system is to the patient's benefit. You stay in a hotel or apt while there. I could never have done a stem cell transplant if it was an inpatient procedure. I dont mind hospitals during the day, but I hate being there at night.
UAMS has a very aggressive approach to treating newly diagnosed myeloma. They have a lot of success, but the approach is not for everyone.
David
-
Arizonan - Name: Arizonan
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: April 2010
- Age at diagnosis: 54
Re: Kappa Free Light Chain Myeloma
I went to VCU in Richmond, Va. They have an excellent stem cell center and there are four doctors and you will meet with all of them during your time there. I did do tandem transplants in2012 as an inpatient. As weak as I was feeling outpatient has not been on the top of my list. I still go back to VCU for regular consultants and test and they have a wonderful communication with my local oncologist. It's about a two and half hour drive for me so travel was easier. I wish you well in your next step and in finding a myeloma specialist.
-
Music box lady - Name: Margie
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2012
- Age at diagnosis: 60
Re: Kappa Free Light Chain Myeloma
Hi Tess,
In answer to your question - my myeloma specialist at MSK is Dr. Alexander Lesokhin. Before and after my transplant, I was treated by Dr. Heather Landau (who went on maternity leave right before my transplant) and Dr. David Chung, who are transplant specialists. Because I have some recent cardiac issues, I am now seeing Dr. Michelle Johnson, who is a cardiologist at MSK. All of these doctors have provided great care and have been good at answering my (too) many questions.
Mike
In answer to your question - my myeloma specialist at MSK is Dr. Alexander Lesokhin. Before and after my transplant, I was treated by Dr. Heather Landau (who went on maternity leave right before my transplant) and Dr. David Chung, who are transplant specialists. Because I have some recent cardiac issues, I am now seeing Dr. Michelle Johnson, who is a cardiologist at MSK. All of these doctors have provided great care and have been good at answering my (too) many questions.
Mike
-
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: Kappa Free Light Chain Myeloma
Hi Tess
I understand your concern about treatment and finding the right myeloma specialist for you. As Mike has mentioned, all the places your have researched are top notch facilities with world-renowned myeloma specialists.
Your time line and my husband's are similar. His myeloma is IgA Lamda and he had almost 100% plasma cells at diagnosis, rare chromosomal abnormalities and lots of lytic lesions throughout his bones. Sounds horrible but he is actually doing well now.
Because we were living in a state without a myeloma specialist, I researched the major cancer centers in America and we decided to come to MD Anderson Cancer Center in Houston, Texas because it is a large teaching and research facility and it is only a day's s drive from our home. I'm am sure the others you mentioned, especially Memorial Sloan Kettering, are good choices for you.
During my husband's induction chemotherapy he received Revlimid, Velcade, dexamethasone and Panobinostat (part of a clinical trial). Following that, he had radiation (IMRT) for two plasmacytomas on his spine and now he is D+17 from his autologous stem cell transplant plus natural killer cells (another clinical trial).
One of the main reasons we chose a major cancer center was the ability to get everything from one facility. It really is "one stop shopping." Also, because my husband's myeloma is aggressive, we wanted the opportunities to participate in clinical trials. Since starting our journey in July 2014, we are shocked and amazed at the compassion and kindness we have been shown here from the entire range of employees - doctors, nurses, medical technologists, administrative, food service and janitorial personnel. And the wonderful volunteer staff! I thank God each and everyday that we made the decision to come here.
Good luck with your research and your decision. We wish you the best and hope your treatment goes smoothly.
I understand your concern about treatment and finding the right myeloma specialist for you. As Mike has mentioned, all the places your have researched are top notch facilities with world-renowned myeloma specialists.
Your time line and my husband's are similar. His myeloma is IgA Lamda and he had almost 100% plasma cells at diagnosis, rare chromosomal abnormalities and lots of lytic lesions throughout his bones. Sounds horrible but he is actually doing well now.
Because we were living in a state without a myeloma specialist, I researched the major cancer centers in America and we decided to come to MD Anderson Cancer Center in Houston, Texas because it is a large teaching and research facility and it is only a day's s drive from our home. I'm am sure the others you mentioned, especially Memorial Sloan Kettering, are good choices for you.
During my husband's induction chemotherapy he received Revlimid, Velcade, dexamethasone and Panobinostat (part of a clinical trial). Following that, he had radiation (IMRT) for two plasmacytomas on his spine and now he is D+17 from his autologous stem cell transplant plus natural killer cells (another clinical trial).
One of the main reasons we chose a major cancer center was the ability to get everything from one facility. It really is "one stop shopping." Also, because my husband's myeloma is aggressive, we wanted the opportunities to participate in clinical trials. Since starting our journey in July 2014, we are shocked and amazed at the compassion and kindness we have been shown here from the entire range of employees - doctors, nurses, medical technologists, administrative, food service and janitorial personnel. And the wonderful volunteer staff! I thank God each and everyday that we made the decision to come here.
Good luck with your research and your decision. We wish you the best and hope your treatment goes smoothly.
-
PattyB - Name: PattyB
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: July 2014
- Age at diagnosis: 64
Re: Kappa Free Light Chain Myeloma
Hi Everyone:
I had my bone marrow biopsy this morning. So glad to get that behind me! I have to give kudos to my oncologist though; he really is amazing. He is very careful to numb me up well, constantly checking to make sure I can't feel anything, tells me when he is ready to draw the aspirate, and then counts to three. That and the Ativan makes everything easier! Of course, I can't say it is painless, but I have honestly had worse pain. Feeling sore now though ...
David:
Thanks for sharing your experience at UAMS. I'm sorry to hear you had kidney problems and I hope that has resolved with your treatment. The outpatient transplant is also easier to understand now that you explained it, and I can certainly understand why you chose that route. I wish I could say bring on the aggressive treatment, but I don't think I'm there yet ... unless, of course, I'm told that I need an aggressive treatment plan.
Mike:
I'm sorry to hear of your recent cardiac issues. I hope Dr. Johnson is able to get everything under control quickly. I really appreciate you sharing the physicians you are working with. I do plan to meet with one of the specialists at MSK - a six hour drive is doable.
Patty:
Thank you so much for sharing your husband's story and your journey to this point. It's so good to know that he is doing well now!
Truthfully, I'm really drawn to MD Anderson, but it would be a three day drive for us. Of course, flying for the initial consultation and work up would not be an issue, but if I were to have an ASCT there, it's my understanding that you can't fly for awhile, which would mean we would have to drive back and I don't know if I would be strong enough to ride that long. I have not completely ruled it out yet though. Hope your husband continues to do well!
Music Box Lady:
Thank you for suggesting VCU in Richmond. I am somewhat familiar with the Massey Cancer Center. Did you see a myeloma specialist there? I hope you are doing well.
All:
I am very grateful for your kind replies and for so generously sharing your own experiences. It is a blessing to have this forum and be a part of a caring community such as this.
To our health!!
Cheers,
Tess
I had my bone marrow biopsy this morning. So glad to get that behind me! I have to give kudos to my oncologist though; he really is amazing. He is very careful to numb me up well, constantly checking to make sure I can't feel anything, tells me when he is ready to draw the aspirate, and then counts to three. That and the Ativan makes everything easier! Of course, I can't say it is painless, but I have honestly had worse pain. Feeling sore now though ...
David:
Thanks for sharing your experience at UAMS. I'm sorry to hear you had kidney problems and I hope that has resolved with your treatment. The outpatient transplant is also easier to understand now that you explained it, and I can certainly understand why you chose that route. I wish I could say bring on the aggressive treatment, but I don't think I'm there yet ... unless, of course, I'm told that I need an aggressive treatment plan.
Mike:
I'm sorry to hear of your recent cardiac issues. I hope Dr. Johnson is able to get everything under control quickly. I really appreciate you sharing the physicians you are working with. I do plan to meet with one of the specialists at MSK - a six hour drive is doable.
Patty:
Thank you so much for sharing your husband's story and your journey to this point. It's so good to know that he is doing well now!
Truthfully, I'm really drawn to MD Anderson, but it would be a three day drive for us. Of course, flying for the initial consultation and work up would not be an issue, but if I were to have an ASCT there, it's my understanding that you can't fly for awhile, which would mean we would have to drive back and I don't know if I would be strong enough to ride that long. I have not completely ruled it out yet though. Hope your husband continues to do well!
Music Box Lady:
Thank you for suggesting VCU in Richmond. I am somewhat familiar with the Massey Cancer Center. Did you see a myeloma specialist there? I hope you are doing well.
All:
I am very grateful for your kind replies and for so generously sharing your own experiences. It is a blessing to have this forum and be a part of a caring community such as this.
To our health!!
Cheers,
Tess
-
Tess - Name: Tess
- Who do you know with myeloma?: Myself - Smoldering
- When were you/they diagnosed?: June 2014
- Age at diagnosis: 56
11 posts
• Page 1 of 2 • 1, 2
Return to Member Introductions / Personal Stories