Hi! I am newly diagnosed with kappa light chain multiple myeloma. I have no CRAB symptoms yet., but K/L ratio very high and 60% monoclonal cells in bone marrow. I'm overwhelmed by all the info on the Internet ... good and bad.
My husband feels we should travel to the Myeloma Center in Little Rock, but I've read there is controversy regarding their approach. I'm very interested in a clinical trial that is focused on a form of immunotherapy, but haven't found any. There seems to be a lot of successful programs with evolving research. How to choose? Thankfully it seems there are a lot of talented people fighting to find a cure for this crazy disease. That makes me hopeful!
Anyway, would you please share your story ... suggest treatment or share opinions on different programs, trials etc? I feel it would be helpful to hear actual experiences!
Thank you so much! Sending positive thoughts to all of you!
Lizzie
Forums
Re: Newly diagnosed, need treatment ... success stories?!
Hi Lizzie,
Just curious ... How is it that you were diagnosed with multiple myeloma if you don't have any of the CRAB symptoms? My understanding is that you have to have at least one of the CRAB symptoms to be diagnosed with multiple myeloma.
Just curious ... How is it that you were diagnosed with multiple myeloma if you don't have any of the CRAB symptoms? My understanding is that you have to have at least one of the CRAB symptoms to be diagnosed with multiple myeloma.
Re: Newly diagnosed, need treatment ... success stories?!
I was told that because K/L ratio was so high and bone marrow presence was 60% I should start treatment. This is exactly why I'm seeking experts for a 2nd opinion! Unjust don't want to waste time and am looking for suggestions! Thanks 
Re: Newly diagnosed, need treatment ... success stories?!
Hi There Lizzy,
Sorry to see you join the club.
I’m glad you don’t have any CRAB symptoms, but a plasma cell level of 60% is definitely high and would warrant further discussion with multiple myeloma specialists around possible treatment.
The group you refer to in Little Rock is UAMS. There is a wide spectrum of different treatment philosophies out there and UAMS tends to be at the extreme end of that spectrum in their treatment philosophy (hit the disease very hard up front with chemo and follow that by transplants). You can find descriptions of their approach by searching on Total Therapy (or TT). They have evolved their TT protocols over the years and have different numbers for their various evolutions of the TT therapy (TT1, TT6, etc).
Some folks on this site have certainly done well by UAMS. Others don’t share their philosophy of hitting hard with chemo followed by transplant(s). In fact, you will find that we are all over the map on our philosophies of treatment. This ranges from exclusively homeopathic approaches to low-dose drug treatment to higher dose drug treatment to transplant to tandem transplant…and everything inbetween…which I think is a good thing.
In any case, you need to do your homework and formulate your own opinion as to the best approach to take. My personal suggestion is to talk to a variety of multiple myeloma specialists, both affiliated and not affiliated with transplant centers. If your insurance will cover seeing multiple docs for initial opinions, why not pay a visit to UAMS and then also talk to some of the other specialists that are in the middle of the transplant spectrum debate, as well as at the other side? I found this journey across the spectrum to be incredibly insightful and helpful. Folks on this site can help point you to various specialists on this continuum, depending on where you live.
Regarding immunotherapy options, there is a lot of work being done here and it is a truly exciting area. This link will give you a better idea of some of the immunotherapy trials currently in the works.
https://myelomabeacon.org/news/2013/11/23/ash-2013-preview-immunotherapy-multiple-myeloma/
However, I think you may be challenged to find an immunotherapy trial that is being used for frontline treatment (which is what your treatment would be considered) or one that isn’t associated with transplant therapy.
Best of luck to you on your journey.
Sorry to see you join the club.
I’m glad you don’t have any CRAB symptoms, but a plasma cell level of 60% is definitely high and would warrant further discussion with multiple myeloma specialists around possible treatment.
The group you refer to in Little Rock is UAMS. There is a wide spectrum of different treatment philosophies out there and UAMS tends to be at the extreme end of that spectrum in their treatment philosophy (hit the disease very hard up front with chemo and follow that by transplants). You can find descriptions of their approach by searching on Total Therapy (or TT). They have evolved their TT protocols over the years and have different numbers for their various evolutions of the TT therapy (TT1, TT6, etc).
Some folks on this site have certainly done well by UAMS. Others don’t share their philosophy of hitting hard with chemo followed by transplant(s). In fact, you will find that we are all over the map on our philosophies of treatment. This ranges from exclusively homeopathic approaches to low-dose drug treatment to higher dose drug treatment to transplant to tandem transplant…and everything inbetween…which I think is a good thing.
In any case, you need to do your homework and formulate your own opinion as to the best approach to take. My personal suggestion is to talk to a variety of multiple myeloma specialists, both affiliated and not affiliated with transplant centers. If your insurance will cover seeing multiple docs for initial opinions, why not pay a visit to UAMS and then also talk to some of the other specialists that are in the middle of the transplant spectrum debate, as well as at the other side? I found this journey across the spectrum to be incredibly insightful and helpful. Folks on this site can help point you to various specialists on this continuum, depending on where you live.
Regarding immunotherapy options, there is a lot of work being done here and it is a truly exciting area. This link will give you a better idea of some of the immunotherapy trials currently in the works.
https://myelomabeacon.org/news/2013/11/23/ash-2013-preview-immunotherapy-multiple-myeloma/
However, I think you may be challenged to find an immunotherapy trial that is being used for frontline treatment (which is what your treatment would be considered) or one that isn’t associated with transplant therapy.
Best of luck to you on your journey.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Newly diagnosed, need treatment ... success stories?!
I agree with Cheryl G. How this diagnosis came into the place at first time? Usually, doctors more missing it then find it. This is not what you were told, but what indicated it? Just curious.
Girl
Girl
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nomm
Re: Newly diagnosed, need treatment ... success stories?!
Muiltibilly thanks so much for your very thorough and helpful response.
Nomm, I first visited a rheumatologist for ongoing joint pain and she ran blood tests, which detected the IgG kappa protein band. I was referred to an oncologist. And after many tests and a BMB I'm where I am today.
Nomm, I first visited a rheumatologist for ongoing joint pain and she ran blood tests, which detected the IgG kappa protein band. I was referred to an oncologist. And after many tests and a BMB I'm where I am today.
Re: Newly diagnosed, need treatment ... success stories?!
It sounds like you probably have smoldering myeloma, Lizzie, not multiple myeloma.
Traditionally, physicians have felt that it is better NOT to treat smoldering myeloma. Until recently, no studies have shown that there is a benefit to treating smoldering myeloma before it progresses to active, symptomatic myeloma.
However, the thinking on this issue is starting to change. I get the sense that most myeloma specialists now understand that there is a category of smoldering myeloma patients who are at a very high risk of progressing to active myeloma, and these patients should be treated at diagnosis, rather than just waiting for the disease to progress to symptomatic myeloma.
The rub is that there isn't yet a clear definition for what is "very high risk" smoldering myeloma.
Your oncologist, however, apparently believes that, based on your test results, you fall into the "very high risk" category, and therefore should be treated.
Is your oncologist a myeloma specialist?
If not, you probably should consider making an appointment with a myeloma specialist to have your test results reviewed, and then you could discuss whether treatment at this stage really makes sense.
Are you close to a major cancer center that would have a myeloma specialist?
There is a discussion in the forum here,
https://myelomabeacon.org/forum/formal-risk-of-progression-classification-for-smoldering-multiple-myeloma-t1542.html
of some of the ways physicians classify smoldering myeloma based on the risk of the disease progressing to symptomatic myeloma.
You can find other related discussions by doing a search from the forum search box on the keywords "risk smoldering" (without the quotation marks).
The key study that recently sparked discussion about whether or not "very high risk" smoldering myeloma should be treated is discussed in this Beacon article:
https://myelomabeacon.org/news/2013/08/02/revlimid-lenalidomide-dexamethasone-high-risk-smoldering-myeloma/
Traditionally, physicians have felt that it is better NOT to treat smoldering myeloma. Until recently, no studies have shown that there is a benefit to treating smoldering myeloma before it progresses to active, symptomatic myeloma.
However, the thinking on this issue is starting to change. I get the sense that most myeloma specialists now understand that there is a category of smoldering myeloma patients who are at a very high risk of progressing to active myeloma, and these patients should be treated at diagnosis, rather than just waiting for the disease to progress to symptomatic myeloma.
The rub is that there isn't yet a clear definition for what is "very high risk" smoldering myeloma.
Your oncologist, however, apparently believes that, based on your test results, you fall into the "very high risk" category, and therefore should be treated.
Is your oncologist a myeloma specialist?
If not, you probably should consider making an appointment with a myeloma specialist to have your test results reviewed, and then you could discuss whether treatment at this stage really makes sense.
Are you close to a major cancer center that would have a myeloma specialist?
There is a discussion in the forum here,
https://myelomabeacon.org/forum/formal-risk-of-progression-classification-for-smoldering-multiple-myeloma-t1542.html
of some of the ways physicians classify smoldering myeloma based on the risk of the disease progressing to symptomatic myeloma.
You can find other related discussions by doing a search from the forum search box on the keywords "risk smoldering" (without the quotation marks).
The key study that recently sparked discussion about whether or not "very high risk" smoldering myeloma should be treated is discussed in this Beacon article:
https://myelomabeacon.org/news/2013/08/02/revlimid-lenalidomide-dexamethasone-high-risk-smoldering-myeloma/
Re: Newly diagnosed, need treatment ... success stories?!
You've gotten some very good suggestions. Doing your research about what Myeloma is, what the various treatments are, pros and cons of autologous stem cell transplants, pros and cons of allogeneic transplants, etc. is important. Getting more than one opinion from multiple myeloma specialists is a good idea so that you can weigh your options.
For me the most important part was finding an multiple myeloma specialist who I liked, could talk to, discuss treatment options with, discuss research with and who listens to my complaints and takes action. I feel that my wishes are respected. My oncologist discusses his thought processes for treatment prior to our beginning a treatment. He also outlines what his recommended plan of treatment is long before we get to that point. He gives me benchmarks for blood work that would lead him to decide to make a change in treatment, or in my case, resuming treatment.
I am now 6 years from diagnosis. I've had induction therapy of Revlimid 15 mg for 21 days and then 7 days rest along with 40 mg Dexamethasone once a week. I had 8 rounds of this prior to going on to an autologous stem cell transplant. It took about 7 months for me to reach complete response following my transplant. I didn't do maintenance therapy following the transplant because I had a bad reaction to Revlimid at 100 days post transplant. 35 months after my transplant I restarted treatment because I had relapsed. I am currently taking 15 mg of Revlimid for 21 days on/7 days off and 20 mg of Dexamethasone one day a week. I have also been receiving a Zometa infusion every 6 weeks since 1 year after my diagnosis secondary to bone lesions throughout my body. I did have a pathologic fracture of my left humerus one year post diagnosis that led to my beginning treatment. I had radiation to my left tibia a year ago secondary to a very painful bone lesion there last year. I worked full time as a physical therapist from the time of my diagnosis until last June when I retired for age reasons not Myeloma reasons. I did take medical leave when my arm broke and when I had my transplant.
Don't pay attention to life expectancy statistics in the things that you read on line. Many, many of us are living long fairly healthy lives with this diagnosis. In my support group there are a few people who have been living with Myeloma for 20+ years. So, although you have been diagnosed with a cancer it doesn't mean that it is the end of your life. If you do your homework and stay on top of things, you are likely to live a normal life.
Nancy in Phila
For me the most important part was finding an multiple myeloma specialist who I liked, could talk to, discuss treatment options with, discuss research with and who listens to my complaints and takes action. I feel that my wishes are respected. My oncologist discusses his thought processes for treatment prior to our beginning a treatment. He also outlines what his recommended plan of treatment is long before we get to that point. He gives me benchmarks for blood work that would lead him to decide to make a change in treatment, or in my case, resuming treatment.
I am now 6 years from diagnosis. I've had induction therapy of Revlimid 15 mg for 21 days and then 7 days rest along with 40 mg Dexamethasone once a week. I had 8 rounds of this prior to going on to an autologous stem cell transplant. It took about 7 months for me to reach complete response following my transplant. I didn't do maintenance therapy following the transplant because I had a bad reaction to Revlimid at 100 days post transplant. 35 months after my transplant I restarted treatment because I had relapsed. I am currently taking 15 mg of Revlimid for 21 days on/7 days off and 20 mg of Dexamethasone one day a week. I have also been receiving a Zometa infusion every 6 weeks since 1 year after my diagnosis secondary to bone lesions throughout my body. I did have a pathologic fracture of my left humerus one year post diagnosis that led to my beginning treatment. I had radiation to my left tibia a year ago secondary to a very painful bone lesion there last year. I worked full time as a physical therapist from the time of my diagnosis until last June when I retired for age reasons not Myeloma reasons. I did take medical leave when my arm broke and when I had my transplant.
Don't pay attention to life expectancy statistics in the things that you read on line. Many, many of us are living long fairly healthy lives with this diagnosis. In my support group there are a few people who have been living with Myeloma for 20+ years. So, although you have been diagnosed with a cancer it doesn't mean that it is the end of your life. If you do your homework and stay on top of things, you are likely to live a normal life.
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, need treatment ... success stories?!
I know someone personally who has smoldering multiple myeloma and visits UAMS, has for several years. His son is a doctor and that is why he is under their watch.
multiple myeloma has so many faces I believe it's hard be negative about any institution that is having some success. I suspect that unless your insurance is a problem you should look into UAMS if it's within a reasonable distance.
It was one of 2 that my oncologist favored, but my insurance favored Siteman in STL.
multiple myeloma has so many faces I believe it's hard be negative about any institution that is having some success. I suspect that unless your insurance is a problem you should look into UAMS if it's within a reasonable distance.
It was one of 2 that my oncologist favored, but my insurance favored Siteman in STL.
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Wayne K - Name: Wayne
- Who do you know with myeloma?: Myself, my sister who passed in '95
- When were you/they diagnosed?: 03/09
- Age at diagnosis: 70
Re: Newly diagnosed, need treatment ... success stories?!
I'd like to add a footnote to my earlier post. This is regarding the smoldering myeloma classification given the 60% plasma cell level. While technically Lizzie may be classified as smoldering since she has no CRAB complications, I believe that a specialist may take exception to the standard watch-and-wait approach with this level of plasma cell involvement.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
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