When my husband was first diagnosed (18 months ago) it sounded as though myeloma was close to being chronic and something that he could live with for decades. Now, a year and a half later, everything I read seems we aren't closer at all. Also, some of the drugs like daratumumab, which seemed so promising, never are mentioned anymore.
Hopefully I'm missing something.
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blair77 - Who do you know with myeloma?: My husband
- When were you/they diagnosed?: April 2013
- Age at diagnosis: 43
Re: Daratumumab
Hi Blair,
I guess I'm missing something in this post.
In an earlier post, you said "My husband was 20% at diagnosis and this was the SOLE reason he was started on treatment. He had no CRAB symptoms". And then you mentioned that he will be undergoing MRD testing at UCSF, which would indicate that they will be testing to see just how deep his response to treatment is.
Why exactly are you saying things "aren't closer at all" after 18 months? What is causing you to think that he needs to move to a new class of drugs like daratumumab at this time (which, by the way, is only available in a clinical trial setting)?
I guess I'm missing something in this post.
In an earlier post, you said "My husband was 20% at diagnosis and this was the SOLE reason he was started on treatment. He had no CRAB symptoms". And then you mentioned that he will be undergoing MRD testing at UCSF, which would indicate that they will be testing to see just how deep his response to treatment is.
Why exactly are you saying things "aren't closer at all" after 18 months? What is causing you to think that he needs to move to a new class of drugs like daratumumab at this time (which, by the way, is only available in a clinical trial setting)?
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Daratumumab
Hi Multibilly,
Yes, my husband is doing well and I actually think now that I know more that he started treatment before he really needed too. He is being tested for MRD and we get those results tomorrow.
However, I want a cure, or at least not a string of therapy that seems to run out for most in 5-7 years ! I want it for him and for everyone else! We have a 1 year old and a 3 year old, so I want the security of knowing he will be here to help me raise our children. That's why I don't feel "we" as an multiple myeloma community seem closer to making the disease chronic / cured.
Yes, my husband is doing well and I actually think now that I know more that he started treatment before he really needed too. He is being tested for MRD and we get those results tomorrow.
However, I want a cure, or at least not a string of therapy that seems to run out for most in 5-7 years ! I want it for him and for everyone else! We have a 1 year old and a 3 year old, so I want the security of knowing he will be here to help me raise our children. That's why I don't feel "we" as an multiple myeloma community seem closer to making the disease chronic / cured.
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blair77 - Who do you know with myeloma?: My husband
- When were you/they diagnosed?: April 2013
- Age at diagnosis: 43
Re: Daratumumab
I do of course not dare to promise anything. And I am just another lay man. But ... having read a lot, attending seminars on myeloma treatment and new and upcoming treatments, and after having visited the Myeloma Beacon since June, I am personally convinced that if your husband can use the treatment available now and live for another 5 or more years, then much better treatments or the long awaited cure may arrive in good time for him.
But you are right, we all want it now. Better yesterday than today.
Best regards,
Lev
But you are right, we all want it now. Better yesterday than today.
Best regards,
Lev
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Lev - Name: Lev
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: June 2014
- Age at diagnosis: 57
Re: Daratumumab
Hi Blair,
I understand your frustration! When you're dealing with multiple myeloma as a patient or caregiver on a day-to-day basis, it's hard to see a big change in progress along the road to a cure now as compared with 18 months ago. However...
A couple weeks ago, I attended a Patient & Family Seminar sponsored by the IMF. At the end of the day, I essentially asked your question to Dr. Brian Durie, who was leading the seminar. My question, with as close to my actual wording as I can remember it, was: "You researchers are all excited about studies that show an 11 month PFS increase or a 4 month OS increase. But if you're a patient, that's nothing to us. What we want is a dramatic improvement, if not a cure, then something that makes the disease manageable without huge QOL issues. What progress has been made toward that goal since your last seminar here a year ago?"
I was impressed with his answer. He definitely "got" my point about the need for a game changer instead of incremental improvements. He is optimistic about anti-CD38 monoclonal antibodies (like daratumumab). Also HDAC inhibitors. And virotherapy, like the measles trial at Mayo. These are all different ways of attacking myeloma than the most commonly used approaches today like alkylating agents (melphalan), proteasome inhibitors (Velcade), and IMiD agents (Revlimid), so they have potential for breakthroughs, especially when used in combination with other agents. I've heard a ton of excitement about the measles virotherapy research, including from my own doctor.
In addition, the use of deep sequencing to understand the genetics of each person's specific disease before even beginning treatment, and then individualizing treatment based on that profile, will be standard practice in the near future, according to Dr. Ola Landgren during his talk earlier in the day. This is where Big Data will play a role - eventually there will be a centralized database of myeloma genetic sequence data as well as treatment data, and disease marker data for lots of patients. Then, as a clinician, when you get a new patient, you sequence them, plug the sequence data into the database, and it will recommend the "best" treatment for that patient.
Of course, it will be ever-changing as new treatments evolve, and there will still be an important role for the myeloma specialist in interpreting the data and recommendations and factoring in other important considerations. But such a database will be a huge step forward. This approach is similar to what is already being done for treatment of some other forms of cancer, using IBM's Watson of Jeopardy fame. See, for example,
http://www.mskcc.org/blog/msk-trains-ibm-watson-help-doctors-make-better-treatment-choices
And, as we've discussed in a different thread recently, standardized MRD testing will help optimize treatment for each individual patient. MRD may also help speed up the approval of new drugs if it becomes accepted as the efficacy measure as a surrogate for PFS or OS.
Like you, I want "soon" to be NOW. But the numbers I got from Dr. Durie, Dr. Landgren, and other speakers indicate that we should expect manageable disease for many patients in as "soon" as 5 years. They really do think we are on the cusp of some dramatic changes for the better. It's great to hear researchers talking in these terms, rather than the old 4-month OS improvement terms.
Finally, I've got my fingers crossed that your husband is MRD-negative!
I understand your frustration! When you're dealing with multiple myeloma as a patient or caregiver on a day-to-day basis, it's hard to see a big change in progress along the road to a cure now as compared with 18 months ago. However...
A couple weeks ago, I attended a Patient & Family Seminar sponsored by the IMF. At the end of the day, I essentially asked your question to Dr. Brian Durie, who was leading the seminar. My question, with as close to my actual wording as I can remember it, was: "You researchers are all excited about studies that show an 11 month PFS increase or a 4 month OS increase. But if you're a patient, that's nothing to us. What we want is a dramatic improvement, if not a cure, then something that makes the disease manageable without huge QOL issues. What progress has been made toward that goal since your last seminar here a year ago?"
I was impressed with his answer. He definitely "got" my point about the need for a game changer instead of incremental improvements. He is optimistic about anti-CD38 monoclonal antibodies (like daratumumab). Also HDAC inhibitors. And virotherapy, like the measles trial at Mayo. These are all different ways of attacking myeloma than the most commonly used approaches today like alkylating agents (melphalan), proteasome inhibitors (Velcade), and IMiD agents (Revlimid), so they have potential for breakthroughs, especially when used in combination with other agents. I've heard a ton of excitement about the measles virotherapy research, including from my own doctor.
In addition, the use of deep sequencing to understand the genetics of each person's specific disease before even beginning treatment, and then individualizing treatment based on that profile, will be standard practice in the near future, according to Dr. Ola Landgren during his talk earlier in the day. This is where Big Data will play a role - eventually there will be a centralized database of myeloma genetic sequence data as well as treatment data, and disease marker data for lots of patients. Then, as a clinician, when you get a new patient, you sequence them, plug the sequence data into the database, and it will recommend the "best" treatment for that patient.
Of course, it will be ever-changing as new treatments evolve, and there will still be an important role for the myeloma specialist in interpreting the data and recommendations and factoring in other important considerations. But such a database will be a huge step forward. This approach is similar to what is already being done for treatment of some other forms of cancer, using IBM's Watson of Jeopardy fame. See, for example,
http://www.mskcc.org/blog/msk-trains-ibm-watson-help-doctors-make-better-treatment-choices
And, as we've discussed in a different thread recently, standardized MRD testing will help optimize treatment for each individual patient. MRD may also help speed up the approval of new drugs if it becomes accepted as the efficacy measure as a surrogate for PFS or OS.
Like you, I want "soon" to be NOW. But the numbers I got from Dr. Durie, Dr. Landgren, and other speakers indicate that we should expect manageable disease for many patients in as "soon" as 5 years. They really do think we are on the cusp of some dramatic changes for the better. It's great to hear researchers talking in these terms, rather than the old 4-month OS improvement terms.
Finally, I've got my fingers crossed that your husband is MRD-negative!
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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: Daratumumab
Blair,
First, thanks for clarifying your comments.
I totally agree with both Lev's and Mike's comments. Understanding what is in the pipeline gives me a great deal of hope for the future. I don't have my sights set on a complete cure, but I have well-founded hope that many of us will be able to better manage this disease as a very long-term chronic condition with far less side effects and greatly enhanced overall survival times.
Best of luck to your hubby. Sounds like he is in good hands at UCSF.
First, thanks for clarifying your comments.
I totally agree with both Lev's and Mike's comments. Understanding what is in the pipeline gives me a great deal of hope for the future. I don't have my sights set on a complete cure, but I have well-founded hope that many of us will be able to better manage this disease as a very long-term chronic condition with far less side effects and greatly enhanced overall survival times.
Best of luck to your hubby. Sounds like he is in good hands at UCSF.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Daratumumab
As the mother of someone diagnosed at 32, I feel like Blair. The last 2 years have been induction chemo, SCT and Revlimid maintenance. Relapse in August. Now doing carfilzomib (Kyprolis) & dex every Thursday and Friday. I was surprised she relapsed so quickly because she was in CR after induction and SCT.
Quality of life is important. For a 35 year old, her life has changed immensely, but she keeps on going the best she can. Soon a decision will have to be made on what is next. It's overwhelming. You hear about so many different things,. With guidance, hopefully the right decision will be made, but how long will that last.
Quality of life is important. For a 35 year old, her life has changed immensely, but she keeps on going the best she can. Soon a decision will have to be made on what is next. It's overwhelming. You hear about so many different things,. With guidance, hopefully the right decision will be made, but how long will that last.
Re: Daratumumab
Dear Blair,
It seems to me that you're looking for the answer to how long is a piece of string? When and how will a cure come about? Answer: Who really knows?
As much as we all hope as patients and carers that this will happen sooner rather then later, it's very possible for a lot of us that this will not happen in our lifetimes.
I for one do not live my life sweating on a cure. As was pointed out in a previous discussion by IvanM, and I quote, "it is not how long you live but how you live" (or something like that). This is the attitude I have adopted and choose to live by as much as I can.
Like you, I too have young children whom obviously I want to be around for as long as possible. But in the meantime, whilst I am capable, my focus is not on my disease but on making lasting memories for them. I do today what I can, in case tomorrow doesn't pan out.
When people ask me my prognosis, I say to them "It will most likely get me in the end. But whether that's in 2 months or twenty years remains to be seen." If I give in to the despair that the stats portray, then this disease has already won. As hard as it is, we have to keep living, not be crippled by what may or may not happen.
Yours Vicki
It seems to me that you're looking for the answer to how long is a piece of string? When and how will a cure come about? Answer: Who really knows?
As much as we all hope as patients and carers that this will happen sooner rather then later, it's very possible for a lot of us that this will not happen in our lifetimes.
I for one do not live my life sweating on a cure. As was pointed out in a previous discussion by IvanM, and I quote, "it is not how long you live but how you live" (or something like that). This is the attitude I have adopted and choose to live by as much as I can.
Like you, I too have young children whom obviously I want to be around for as long as possible. But in the meantime, whilst I am capable, my focus is not on my disease but on making lasting memories for them. I do today what I can, in case tomorrow doesn't pan out.
When people ask me my prognosis, I say to them "It will most likely get me in the end. But whether that's in 2 months or twenty years remains to be seen." If I give in to the despair that the stats portray, then this disease has already won. As hard as it is, we have to keep living, not be crippled by what may or may not happen.
Yours Vicki
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vicstir - Name: Vic
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: October 2013
- Age at diagnosis: 39
Re: Daratumumab
Great discussion. We really have some great posters taking the time to make some excellent contributions here.
I disagree with the premise that there is no cure available for myeloma patients currently. In my opinion, myeloma is curable for some younger patients, it is already a chronic disease for some patients, but unfortunately still is a fatal / incurable disease for many and, unfortunately, probably the majority of patients. Part of that stems from how much different the disease presents for different patients. The other is that myeloma typically presents in 70 year old patients, so they are not candidates for potentially curative therapy but the disease appears to be chronic for some of them.
WIth respect to finding other forms of curative therapy in the near future that more myeloma patients are capable of using, unfortunately, even if found, it is unlikely they would be curative for patients that currently have the disease. I am not aware of any therapy currently available that cures a high percentage of relapsed blood cancer patients. Curative therapy currently needs to be applied as part of a patient's upfront therapy. Finding a cure for relapsed myeloma patients would be an incredible leap forward. I hope it comes, but it is more realistic to think there will be newer therapies with less side effects than the currently available therapies like Revlimid, Velcade, Kyprolis, etc.
With respect to the discussion of many myeloma patients having less than ideal QOL above, unfortunately, that is the nature of taking continuous therapy. If you ever read about CML (chronic myelogenous leukemia), patients who are long term responders to Gleevec (imatinib), you will read studies like this.
http://medicalxpress.com/news/2013-06-quality-of-life-issues-cml-patients.html, which discusses this study:
KM Phillips et al., "Quality of life outcomes in patients with chronic myeloid leukemia treated with tyrosine kinase inhibitors: a controlled comparison," Supportive Care in Cancer, April 2013, Volume 21, Issue 4, pp 1097-1103
My point for writing that is that patients have to be realistic that, while on continuous therapy for blood cancer, they are unlikely to have QOL on par with the general population. In my opinion, reduced QOL is the main downside to trying to turn blood cancers into a chronic disease.
I disagree with the premise that there is no cure available for myeloma patients currently. In my opinion, myeloma is curable for some younger patients, it is already a chronic disease for some patients, but unfortunately still is a fatal / incurable disease for many and, unfortunately, probably the majority of patients. Part of that stems from how much different the disease presents for different patients. The other is that myeloma typically presents in 70 year old patients, so they are not candidates for potentially curative therapy but the disease appears to be chronic for some of them.
WIth respect to finding other forms of curative therapy in the near future that more myeloma patients are capable of using, unfortunately, even if found, it is unlikely they would be curative for patients that currently have the disease. I am not aware of any therapy currently available that cures a high percentage of relapsed blood cancer patients. Curative therapy currently needs to be applied as part of a patient's upfront therapy. Finding a cure for relapsed myeloma patients would be an incredible leap forward. I hope it comes, but it is more realistic to think there will be newer therapies with less side effects than the currently available therapies like Revlimid, Velcade, Kyprolis, etc.
With respect to the discussion of many myeloma patients having less than ideal QOL above, unfortunately, that is the nature of taking continuous therapy. If you ever read about CML (chronic myelogenous leukemia), patients who are long term responders to Gleevec (imatinib), you will read studies like this.
"Although much less toxic than the treatments they replaced, tyrosine kinase inhibitors, such as imatinib, nilotinib or dasatinib, do cause symptoms that adversely affect a patient's quality of life," said study senior author Paul B. Jacobsen, Ph.D., associate center director and senior member of the Health Outcomes and Behavior Program at Moffitt.
Tyrosine kinase inhibitors are standard treatment for chronic myeloid leukemia. Using several quality-of-life measurement tools, researchers compared chronic myeloid leukemia patients taking tyrosine kinase inhibitors for a minimum of six months to a group of participants of the same age and gender who did not have cancer. The most common side effects among study participants were fatigue, pain and difficulty concentrating.
Another side effect that researchers say proved to be significant was appearance. Twenty-nine percent of patients reported distress over not looking like themselves.
"To our knowledge, other studies have not addressed patients' concerns about their appearance," Jacobsen said. "We found that skin changes, such as swelling, are distressing for patients taking tyrosine kinase inhibitors."
The researchers concluded that their findings "point to the need to develop interventions that can address quality of life for patients with chronic myeloid leukemia who are taking tyrosine kinase inhibitors.""
http://medicalxpress.com/news/2013-06-quality-of-life-issues-cml-patients.html, which discusses this study:
KM Phillips et al., "Quality of life outcomes in patients with chronic myeloid leukemia treated with tyrosine kinase inhibitors: a controlled comparison," Supportive Care in Cancer, April 2013, Volume 21, Issue 4, pp 1097-1103
My point for writing that is that patients have to be realistic that, while on continuous therapy for blood cancer, they are unlikely to have QOL on par with the general population. In my opinion, reduced QOL is the main downside to trying to turn blood cancers into a chronic disease.
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Mark11
Re: Daratumumab
Ultimately, this discussion, while thought provoking, is rather subjective.
For example, while I deeply respect Multibilly's contribution to this community, I disagree with the following statement: "Understanding what is in the pipeline gives me a great deal of hope for the future." I feel exactly to the contrary. Understanding the pipeline is what gives me a sobering view regarding the long term survival of a young patient.
Same goes for Mark's comment. We all know that Mark is a firm believer that an upfront allo has a curative probability for young patients. He reads the City of Hope study that we discussed on several occasions as supportive of that view. I read it differently.
At the end of the day, who's right, who's wrong, not really sure it matters that much. We, as individuals, will always hope for the best. Some of us may make it until old age, some of us won't.
In the meanwhile, enjoy life as much as you can.
For example, while I deeply respect Multibilly's contribution to this community, I disagree with the following statement: "Understanding what is in the pipeline gives me a great deal of hope for the future." I feel exactly to the contrary. Understanding the pipeline is what gives me a sobering view regarding the long term survival of a young patient.
Same goes for Mark's comment. We all know that Mark is a firm believer that an upfront allo has a curative probability for young patients. He reads the City of Hope study that we discussed on several occasions as supportive of that view. I read it differently.
At the end of the day, who's right, who's wrong, not really sure it matters that much. We, as individuals, will always hope for the best. Some of us may make it until old age, some of us won't.
In the meanwhile, enjoy life as much as you can.
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ivanm - Name: Ivan Mitev
- Who do you know with myeloma?: self
- When were you/they diagnosed?: August, 2011
- Age at diagnosis: 37
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