Stan,
I have had a number of posts on this and other topics where I discussed my journey. In essence I was diagnosed with IGG Kappa light chain Myeloma at stage 2 in Feb 2009. My initial protocal was Revlimid (10 mg - on 21 days off 7), Velcade once a week, 40 mg of Dex orally once a week and Areidia infusion once a month. I never showed an M spike so my multiple myeloma is tracked through the Light Chain Assay. After 3 cycles of the above treatment all of my light chain readings were in the normal range. I continued on this protocal until early 2010 when my oncologist started dialing back the treatment. I was left on Revlimid but the Velcade went to once every 2 weeks and the dex was changed to once every two weeks as well. By the end of 2010 the dex was reduced to 20 mg once every 2 weeks. The Aredia was moved to once every 2 months.
I contracted viral meningitis and C diff in early July this year. As a result my oncologist put me on monthly IVIG and removed me from Revlimid.
My current protocal is IVIG once a month, Velcade (subcutaneas) once every 2 weeks, dex 20 mg once every 2 weeks and Aredia once every 3 months.
I have maintained all normal light chain readings and continue to not have an M spike.
So in essence my treatment was similar to induction thearapy for about 7-8 cycles then a slow back off to a maintance line that I am on now.
As you can see from my posts, I am very active physically and attribute that as part of the reason I have been succesful in remaining in a remissive state.
Ron
Forums
-
Ron Harvot - Name: Ron Harvot
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2009
- Age at diagnosis: 56
Re: Looking for Feedback on Recommended First Round Treatmen
there is a lot of info in this thread!
There is no right and wrong treatments in my opinion. The "excitement" with the newer discovered drugs have opened up many more options for us pateints who are living with multiple myeloma. I like what Mark said, we all tend to think our treatment is the best option, if we had positve outcomes to the treatment.
that is only natural, experience is the best teacher.
I like the suggestion to get a few opinions. If you are able to do that, that is great. You can hear pros and cons to many options out there and hopefully choose one that will be best for you.
What I dislike is the anti Auto Stem Cell transplant sentimants which seem to be common now. While I think it may not be right for everyone, for me there was no question that some kind of stem cell transplant was needed. My disease progressed fast, it responded to treatment, but there were alot of multiple myeloma cells to kill, and since I am very young the thought of taking continuous cycles of lower dose chemo's was not really an option for me. But for someone with different characteristics, this may not be the best option.
The agrressive tandem transplant option was not there for me either since I live in Canada, but had it been I'm sure that is how I would have went.
Let's also consider the fact that many people are very sick when they are diagnosed, multiple myeloma isn't just some numbers in your blood work. It causes real life threatening symptoms, which sometimes need to be treated quickly! Once you are under control, in the first remission you have more time to debate the best line of attack should you relapse.
The chess game analogy. Truthfully, my Dr. and I discussed the plan of what todo if I relapse when we decided the available maintenence options were not right for me. Good to have plans in place!
There is no right and wrong treatments in my opinion. The "excitement" with the newer discovered drugs have opened up many more options for us pateints who are living with multiple myeloma. I like what Mark said, we all tend to think our treatment is the best option, if we had positve outcomes to the treatment.
that is only natural, experience is the best teacher.I like the suggestion to get a few opinions. If you are able to do that, that is great. You can hear pros and cons to many options out there and hopefully choose one that will be best for you.
What I dislike is the anti Auto Stem Cell transplant sentimants which seem to be common now. While I think it may not be right for everyone, for me there was no question that some kind of stem cell transplant was needed. My disease progressed fast, it responded to treatment, but there were alot of multiple myeloma cells to kill, and since I am very young the thought of taking continuous cycles of lower dose chemo's was not really an option for me. But for someone with different characteristics, this may not be the best option.
The agrressive tandem transplant option was not there for me either since I live in Canada, but had it been I'm sure that is how I would have went.
Let's also consider the fact that many people are very sick when they are diagnosed, multiple myeloma isn't just some numbers in your blood work. It causes real life threatening symptoms, which sometimes need to be treated quickly! Once you are under control, in the first remission you have more time to debate the best line of attack should you relapse.
The chess game analogy. Truthfully, my Dr. and I discussed the plan of what todo if I relapse when we decided the available maintenence options were not right for me. Good to have plans in place!
-
lys2012 - Name: Alyssa
- When were you/they diagnosed?: 2010, Toronto, Canada
- Age at diagnosis: 32
Re: Looking for Feedback on Recommended First Round Treatmen
Ron Harvot wrote:
> Stan,
>
> I have had a number of posts on this and other topics where I discussed my
> journey. In essence I was diagnosed with IGG Kappa light chain Myeloma at
> stage 2 in Feb 2009. My initial protocal was Revlimid (10 mg - on 21 days
> off 7), Velcade once a week, 40 mg of Dex orally once a week and Areidia
> infusion once a month. I never showed an M spike so my multiple myeloma is
> tracked through the Light Chain Assay. After 3 cycles of the above
> treatment all of my light chain readings were in the normal range. I
> continued on this protocal until early 2010 when my oncologist started
> dialing back the treatment. I was left on Revlimid but the Velcade went to
> once every 2 weeks and the dex was changed to once every two weeks as well.
> By the end of 2010 the dex was reduced to 20 mg once every 2 weeks. The
> Aredia was moved to once every 2 months.
>
> I contracted viral meningitis and C diff in early July this year. As a
> result my oncologist put me on monthly IVIG and removed me from Revlimid.
>
> My current protocal is IVIG once a month, Velcade (subcutaneas) once every
> 2 weeks, dex 20 mg once every 2 weeks and Aredia once every 3 months.
>
> I have maintained all normal light chain readings and continue to not have
> an M spike.
>
> So in essence my treatment was similar to induction thearapy for about 7-8
> cycles then a slow back off to a maintance line that I am on now.
>
> As you can see from my posts, I am very active physically and attribute
> that as part of the reason I have been succesful in remaining in a
> remissive state.
>
>
>
>
> Ron
Ron.
It does seem like you're doing OK with what seems a minimal amount of these drugs. All I'm hoping for is to be able to function on a somewhat normal level. I understand that there'll be ups and downs.
I've been told to keep an eye on my hemoglobin and creatinine numbers.They've been pretty much within normal range. I'm IgG Kappa.
Good luck and, thanks.
> Stan,
>
> I have had a number of posts on this and other topics where I discussed my
> journey. In essence I was diagnosed with IGG Kappa light chain Myeloma at
> stage 2 in Feb 2009. My initial protocal was Revlimid (10 mg - on 21 days
> off 7), Velcade once a week, 40 mg of Dex orally once a week and Areidia
> infusion once a month. I never showed an M spike so my multiple myeloma is
> tracked through the Light Chain Assay. After 3 cycles of the above
> treatment all of my light chain readings were in the normal range. I
> continued on this protocal until early 2010 when my oncologist started
> dialing back the treatment. I was left on Revlimid but the Velcade went to
> once every 2 weeks and the dex was changed to once every two weeks as well.
> By the end of 2010 the dex was reduced to 20 mg once every 2 weeks. The
> Aredia was moved to once every 2 months.
>
> I contracted viral meningitis and C diff in early July this year. As a
> result my oncologist put me on monthly IVIG and removed me from Revlimid.
>
> My current protocal is IVIG once a month, Velcade (subcutaneas) once every
> 2 weeks, dex 20 mg once every 2 weeks and Aredia once every 3 months.
>
> I have maintained all normal light chain readings and continue to not have
> an M spike.
>
> So in essence my treatment was similar to induction thearapy for about 7-8
> cycles then a slow back off to a maintance line that I am on now.
>
> As you can see from my posts, I am very active physically and attribute
> that as part of the reason I have been succesful in remaining in a
> remissive state.
>
>
>
>
> Ron
Ron.
It does seem like you're doing OK with what seems a minimal amount of these drugs. All I'm hoping for is to be able to function on a somewhat normal level. I understand that there'll be ups and downs.
I've been told to keep an eye on my hemoglobin and creatinine numbers.They've been pretty much within normal range. I'm IgG Kappa.
Good luck and, thanks.
-
Stan W. - Name: Stan
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: SMM-April 2012
- Age at diagnosis: 58
Re: Looking for Feedback on Recommended First Round Treatmen
There are going to be proponents for every treatment option if that particular treatment worked. Likewise bad experiences will also be highlighted (eg. my auto). This makes it difficult for the newly diagnosed to know what is the right treatment for them. Furthermore depending on which country you live in there may be restrictions as to your treatment. In Australia there is no choice initially if you want the government to subsidize your treatment (eg. Velcade infusion in hospital free or AU $42,000 for 1 month supply - jan 2010 figures - I waited until I qualified for the government subsidy 
).
At present multiple myeloma can be loosely divided into high risk disease or lower risk and the treatments for these can vary. It would be wonderful if treatment could be individualised for each patient to maximize response and minimize the side effects - that is something that I would like to see in my lifetime. However the genetic mutations that play a part in multiple myeloma are numerous (see excerpt below), they can evolve during the course of the disease and an individual patient may have multiple mutations.
Research Provides Insight Into Genetic Changes Responsible For Multiple Myeloma (EHA 2012)
By Virginia Li
Published: Jul 2, 2012 10:02 am
"Genome sequencing can be used to determine the exact makeup of a patient’s genetic information (scientifically referred to as DNA). By comparing the genomic sequence of a healthy cell to the sequence of a cancerous cell, mutations can be identified and studied.
Once mutations associated with multiple myeloma are identified, researchers can develop new treatments targeted at those mutations.
Because myeloma patients generally have different combinations of mutations, the ability to identify a patient’s mutations along with the development of targeted treatments could ultimately lead to more individualized therapy for myeloma patients.
The full genome of a myeloma cell was first sequenced in 2009 (see related Beacon news). Since then, researchers have continued to sequence the genomes of myeloma cells from more patients to better understand which genetic mutations are responsible for multiple myeloma (see related Beacon news).
In the continued quest to better understand the genetic variances responsible for the onset and progression of myeloma, Dr. Bolli and his colleagues sequenced the genomes of 68 multiple myeloma patients. Additionally, multiple DNA samples from 17 of the patients were gathered at different time points, ranging from five to 18 months apart.
The researchers identified 1,803 genes that were mutated in the patients’ myeloma cells; 292 of the genes were mutated in multiple patients, suggesting that they play a role in myeloma. The mutations included some of those previously identified by myeloma genome sequencing studies, but several new gene mutations also were identified as being involved in myeloma.
Overall, 97 percent of patients had at least two sets of myeloma cells with different genetic mutations at diagnosis. These results suggest that myeloma is not only a heterogeneous disease across patients, but that each patient has heterogeneous disease.
Of the patients who provided multiple DNA samples available, 80 percent demonstrated shifts over time in the amount of myeloma cells with certain genetic mutations. Additionally, 60 percent of patients acquired more chromosomal additions or deletions. Of these, 44 percent eventually showed evidence of a deleted region in chromosome 17 (known as 17p deletion). The 17p deletion is categorized as a high-risk abnormality that commonly leads to poorer survival outcomes. These results suggest that the new mutations in later samples play a role in disease progression."
Following is one of the replys by the Beacon staff.
"As is already known, these results imply that the same myeloma treatment is not going to work for every patient.
These results also help to explain why a myeloma patient may partially respond to a myeloma therapy, but not achieve a complete response. And they also help to explain why a patient might relapse even after responding very well to myeloma therapy.
Since a patient has multiple types of myeloma cells, some of the cells, those with a certain set of mutations, may respond well to a given myeloma therapy, while other cells that have a different set of mutations do not respond to the therapy.
Likewise, most of a patient’s cells may respond to a given therapy, but a few with a different set of mutations may persist, causing relapse. This can also explain why a new therapy may be needed at relapse, since the clone that causes relapse may be a different clone than what was predominate at diagnosis.
These results also help explain why combination therapies are often necessary to combat a patient’s myeloma."
Heres hoping everyones myeloma will be controlled.
Libby
). At present multiple myeloma can be loosely divided into high risk disease or lower risk and the treatments for these can vary. It would be wonderful if treatment could be individualised for each patient to maximize response and minimize the side effects - that is something that I would like to see in my lifetime. However the genetic mutations that play a part in multiple myeloma are numerous (see excerpt below), they can evolve during the course of the disease and an individual patient may have multiple mutations.
Research Provides Insight Into Genetic Changes Responsible For Multiple Myeloma (EHA 2012)
By Virginia Li
Published: Jul 2, 2012 10:02 am
"Genome sequencing can be used to determine the exact makeup of a patient’s genetic information (scientifically referred to as DNA). By comparing the genomic sequence of a healthy cell to the sequence of a cancerous cell, mutations can be identified and studied.
Once mutations associated with multiple myeloma are identified, researchers can develop new treatments targeted at those mutations.
Because myeloma patients generally have different combinations of mutations, the ability to identify a patient’s mutations along with the development of targeted treatments could ultimately lead to more individualized therapy for myeloma patients.
The full genome of a myeloma cell was first sequenced in 2009 (see related Beacon news). Since then, researchers have continued to sequence the genomes of myeloma cells from more patients to better understand which genetic mutations are responsible for multiple myeloma (see related Beacon news).
In the continued quest to better understand the genetic variances responsible for the onset and progression of myeloma, Dr. Bolli and his colleagues sequenced the genomes of 68 multiple myeloma patients. Additionally, multiple DNA samples from 17 of the patients were gathered at different time points, ranging from five to 18 months apart.
The researchers identified 1,803 genes that were mutated in the patients’ myeloma cells; 292 of the genes were mutated in multiple patients, suggesting that they play a role in myeloma. The mutations included some of those previously identified by myeloma genome sequencing studies, but several new gene mutations also were identified as being involved in myeloma.
Overall, 97 percent of patients had at least two sets of myeloma cells with different genetic mutations at diagnosis. These results suggest that myeloma is not only a heterogeneous disease across patients, but that each patient has heterogeneous disease.
Of the patients who provided multiple DNA samples available, 80 percent demonstrated shifts over time in the amount of myeloma cells with certain genetic mutations. Additionally, 60 percent of patients acquired more chromosomal additions or deletions. Of these, 44 percent eventually showed evidence of a deleted region in chromosome 17 (known as 17p deletion). The 17p deletion is categorized as a high-risk abnormality that commonly leads to poorer survival outcomes. These results suggest that the new mutations in later samples play a role in disease progression."
Following is one of the replys by the Beacon staff.
"As is already known, these results imply that the same myeloma treatment is not going to work for every patient.
These results also help to explain why a myeloma patient may partially respond to a myeloma therapy, but not achieve a complete response. And they also help to explain why a patient might relapse even after responding very well to myeloma therapy.
Since a patient has multiple types of myeloma cells, some of the cells, those with a certain set of mutations, may respond well to a given myeloma therapy, while other cells that have a different set of mutations do not respond to the therapy.
Likewise, most of a patient’s cells may respond to a given therapy, but a few with a different set of mutations may persist, causing relapse. This can also explain why a new therapy may be needed at relapse, since the clone that causes relapse may be a different clone than what was predominate at diagnosis.
These results also help explain why combination therapies are often necessary to combat a patient’s myeloma."
Heres hoping everyones myeloma will be controlled.
Libby
-
LibbyC - Name: LibbyC
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2009
- Age at diagnosis: 43
Re: Looking for Feedback on Recommended First Round Treatmen
Thanks Gary P for posting the links about recommended initial treatments. There is an interesting continuum in the multiple myeloma world, that I have become more aware of after reading the Beacon. Like Libby, I do not live in the US (am Canadian). Your choices seem to be more inclusive of the latest therapies, but then that maybe makes it harder to decide what to do...a LOT of choices. Libby, is Revlimid approved in AU yet? It wasn't approved in Canada when I started my treatments back in '09, and hence my initial treatments were limited to Velcade also, as far as the newer novel agents go. Thalidomide has been available for a much longer time, of course.
Multibilly...you have 'multi choices'! Best wishes to you on your treatments...let us know what you decide to do!
Multibilly...you have 'multi choices'! Best wishes to you on your treatments...let us know what you decide to do!
-
Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Looking for Feedback on Recommended First Round Treatmen
Gary P wrote:
With this in mind I would like to provide you with some bedtime
> reading. The first is a consensus treatment plan for multiple myeloma
> patients put together by the worlds most renowned multiple myeloma
> specialists. This is over a year old, but would not change much in that
> time frame.
> You can find it at the link:
> http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3293742/
>
> I will send you one other bit of published material from the Mayo Clinic
> which has their internal consensus opinion for myeloma treatment called
> mSmart. You can find it at the following link:
> http://msmart.org/newly%20diagnosed%20myeloma.pdf Good Luck and God
> Bless/Gary P
Just what I want to snuggle up with before nodding off the night
Seriously, these are good reads and much appreciated. I have more discussions with my docs scheduled and it looks like I will be getting a PET scan before the year is out to really verify if I have lytic bone lesions or not. In the meantime, I am also inspired by Ron's accounts to workout longer every day and to really bring a lot of great veggies, fruits and grains into my diet. At a minimum, I could go into a transplant in great shape to improve my odds and recovery time, and best case, I would hope to hold this at bay or knock it down.
With this in mind I would like to provide you with some bedtime
> reading. The first is a consensus treatment plan for multiple myeloma
> patients put together by the worlds most renowned multiple myeloma
> specialists. This is over a year old, but would not change much in that
> time frame.
> You can find it at the link:
> http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3293742/
>
> I will send you one other bit of published material from the Mayo Clinic
> which has their internal consensus opinion for myeloma treatment called
> mSmart. You can find it at the following link:
> http://msmart.org/newly%20diagnosed%20myeloma.pdf Good Luck and God
> Bless/Gary P
Just what I want to snuggle up with before nodding off the night
Seriously, these are good reads and much appreciated. I have more discussions with my docs scheduled and it looks like I will be getting a PET scan before the year is out to really verify if I have lytic bone lesions or not. In the meantime, I am also inspired by Ron's accounts to workout longer every day and to really bring a lot of great veggies, fruits and grains into my diet. At a minimum, I could go into a transplant in great shape to improve my odds and recovery time, and best case, I would hope to hold this at bay or knock it down.-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Looking for Feedback on Recommended First Round Treatmen
Hi Again Multibilly and All, I may not be a typical patient, since probably there isn't one really, but on the topic of PN, I am able to say that I only have the faintest amount anymore, in my feet. I did have treatments with Velcade, and also low dose Revlimid, but have been off of all chemo drugs since April 2011. Gradually, my side effects lessened to the point where I feel quite normal again! I did have PN, but not as severely as George and others have described. Since I was treated, which was on infusions of Velcade, a newer method, sub cutaneous injections, is now being used for some patients. My doctors continually queried me about the PN though, and I think it was a factor in me having shorter exposures to the drugs than I could have had, and also the lowest dose of Revlimid after I got into a CR.
-
Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Looking for Feedback on Recommended First Round Treatmen
Nancy Shamanna wrote:
> Hi Again Multibilly and All, I may not be a typical patient, since
> probably there isn't one really, but on the topic of PN, I am able to say
> that I only have the faintest amount anymore, in my feet. I did have
> treatments with Velcade, and also low dose Revlimid, but have been off of
> all chemo drugs since April 2011. Gradually, my side effects lessened to
> the point where I feel quite normal again! I did have PN, but not as
> severely as George and others have described. Since I was treated, which
> was on infusions of Velcade, a newer method, sub cutaneous injections, is
> now being used for some patients. My doctors continually queried me about
> the PN though, and I think it was a factor in me having shorter exposures
> to the drugs than I could have had, and also the lowest dose of Revlimid
> after I got into a CR.
Thanks Nancy. My specialist did indicate that subcutaneous Velcade injections (which he does use and advocate) did cause less problems than IV Velcade . Also, by dialing down the dose, adjusting frequency and perhaps skipping treatments, his experience was that PN was generally avoidable on a VRD regime, but certainly wasn't non-existent. In general, he said he has seen the greatest number of PN problems with patients that weren't self-advocating during the treatments and letting the doc know right away if there were any PN issues (not an issue for me ). So, this is consistent with what you are saying. I imagine somebody has posted this before, but this is a good data on subcutaneous vs IV Velcade incidence of PN (still not negligible with subcutaneous administrations). http://www.velcade-hcp.com/subcutaneous-injection/
BTW, my doc also is a fan of carfilzoimib (which certainly has many of its own serious dangers, https://myelomabeacon.org/news/2012/06/18/fda-very-concerned-about-carfilzomib-kyprolis-safety/ , but does tend to reduce the incidence of PN) and he does use it with good success with refractory/relapsed patients. We are also investigating whether it is an option to consider for front-line therapy in an off-label fashion.
> Hi Again Multibilly and All, I may not be a typical patient, since
> probably there isn't one really, but on the topic of PN, I am able to say
> that I only have the faintest amount anymore, in my feet. I did have
> treatments with Velcade, and also low dose Revlimid, but have been off of
> all chemo drugs since April 2011. Gradually, my side effects lessened to
> the point where I feel quite normal again! I did have PN, but not as
> severely as George and others have described. Since I was treated, which
> was on infusions of Velcade, a newer method, sub cutaneous injections, is
> now being used for some patients. My doctors continually queried me about
> the PN though, and I think it was a factor in me having shorter exposures
> to the drugs than I could have had, and also the lowest dose of Revlimid
> after I got into a CR.
Thanks Nancy. My specialist did indicate that subcutaneous Velcade injections (which he does use and advocate) did cause less problems than IV Velcade . Also, by dialing down the dose, adjusting frequency and perhaps skipping treatments, his experience was that PN was generally avoidable on a VRD regime, but certainly wasn't non-existent. In general, he said he has seen the greatest number of PN problems with patients that weren't self-advocating during the treatments and letting the doc know right away if there were any PN issues (not an issue for me
). So, this is consistent with what you are saying. I imagine somebody has posted this before, but this is a good data on subcutaneous vs IV Velcade incidence of PN (still not negligible with subcutaneous administrations). http://www.velcade-hcp.com/subcutaneous-injection/BTW, my doc also is a fan of carfilzoimib (which certainly has many of its own serious dangers, https://myelomabeacon.org/news/2012/06/18/fda-very-concerned-about-carfilzomib-kyprolis-safety/ , but does tend to reduce the incidence of PN) and he does use it with good success with refractory/relapsed patients. We are also investigating whether it is an option to consider for front-line therapy in an off-label fashion.
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Looking for Feedback on Recommended First Round Treatmen
Hi Multibilly,
It is great that you are reading a lot. Being an informed patient is very important.
Gary P. made a great point on his blog.
The reality is that the overall survival data is roughly the same as long as you are going to an expert with a plan. It is often said that Dr. James Berenson (less aggressive) and Dr. Barlogie (more aggressive) are on the exact opposite ends of the treatment spectrum. One thing is similar between both Doctors and I think contributes to their success. They both make use of all classes of drugs including older drugs like alklyators and anthracyclines. Dr. Barlogie delivers his alkylators in high doses (autos) and Dr. Berenson in tablets, but both use the drug. Also both make use of Thalidomide, the oldest of the IMIDs. They both use Revlimid a lot as well. As I mentioned above, I used 7 different type of therapies. My treatment was done in 8 months, so I am definitely in the "fast and furious" camp!
My big question with carfilzomib or Velcade with an IMID/DEX as induction is this. If the easisest cells to kill are the ones that present at diagnosis, why use the two best drugs against them? IMO "Public Enemy #1" of any myeloma patient is resistance to IMID's and proteasome inhibitors. It seems to be common sense that the patients at the highest risk of becoming resistant to these drugs are the ones using them in long cycles early on.
I also would ask your Doctor what type of plan they have if their treatment strategy does not achieve a complete response or when you relapse. I for one would not be satisfied with "hope for a new therapy to come along".
I know the answer to that question. While my Doctor did use a lot of different lines of attack during my therapy, one is clearly missing. I did not use any IMID. Here is why: "The Therapeutic Effect of Lenalidomide (Revlimid) Is Enhanced After Allogeneic Stem Cell Transplantation"
https://ash.confex.com/ash/2011/webprogram/Paper43648.html
Here is how it works for relapsed patients after an allo:
"In this heavily pre-treated cohort of patients, the use of lenalidomide in relapsing patients
after allo-SCT was associated with an ORR of 83% including 29% of CR, 23% of VGPR and
31% of PR (Table 3). The optimal response was obtained after a median of 3 cycles (range,
0.2-11)."
http://www.haematologica.org/content/early/2012/10/29/haematol.2012.069328.long
By point of comparison, here is how carfilzomib/pomalidomide and DEX works in patients that are relapsed and refractory to Velcade and Revlimid.
"We then enrolled an expansion cohort of 20 patients from 8 centers resulting in a total study population of 32 patients, with 25 still receiving treatment. Three patients have died, all from progressive multiple myeloma. Early response assessments in 27 out of 32 patients show 2 VGPR, 7 PR, 6 MR, 8 SD, and 4 PD for a ≥MR rate of 56%. "
https://ash.confex.com/ash/2012/webprogram/Paper49589.html
As you can see, I have a much better treatment option available to me because my Doctor has a long term treatment strategy and does not just use the best drugs for long cycles upfront.
Mark
It is great that you are reading a lot. Being an informed patient is very important.
Gary P. made a great point on his blog.
The reality is that the overall survival data is roughly the same as long as you are going to an expert with a plan. It is often said that Dr. James Berenson (less aggressive) and Dr. Barlogie (more aggressive) are on the exact opposite ends of the treatment spectrum. One thing is similar between both Doctors and I think contributes to their success. They both make use of all classes of drugs including older drugs like alklyators and anthracyclines. Dr. Barlogie delivers his alkylators in high doses (autos) and Dr. Berenson in tablets, but both use the drug. Also both make use of Thalidomide, the oldest of the IMIDs. They both use Revlimid a lot as well. As I mentioned above, I used 7 different type of therapies. My treatment was done in 8 months, so I am definitely in the "fast and furious" camp!
My big question with carfilzomib or Velcade with an IMID/DEX as induction is this. If the easisest cells to kill are the ones that present at diagnosis, why use the two best drugs against them? IMO "Public Enemy #1" of any myeloma patient is resistance to IMID's and proteasome inhibitors. It seems to be common sense that the patients at the highest risk of becoming resistant to these drugs are the ones using them in long cycles early on.
I also would ask your Doctor what type of plan they have if their treatment strategy does not achieve a complete response or when you relapse. I for one would not be satisfied with "hope for a new therapy to come along".
I know the answer to that question. While my Doctor did use a lot of different lines of attack during my therapy, one is clearly missing. I did not use any IMID. Here is why: "The Therapeutic Effect of Lenalidomide (Revlimid) Is Enhanced After Allogeneic Stem Cell Transplantation"
https://ash.confex.com/ash/2011/webprogram/Paper43648.html
Here is how it works for relapsed patients after an allo:
"In this heavily pre-treated cohort of patients, the use of lenalidomide in relapsing patients
after allo-SCT was associated with an ORR of 83% including 29% of CR, 23% of VGPR and
31% of PR (Table 3). The optimal response was obtained after a median of 3 cycles (range,
0.2-11)."
http://www.haematologica.org/content/early/2012/10/29/haematol.2012.069328.long
By point of comparison, here is how carfilzomib/pomalidomide and DEX works in patients that are relapsed and refractory to Velcade and Revlimid.
"We then enrolled an expansion cohort of 20 patients from 8 centers resulting in a total study population of 32 patients, with 25 still receiving treatment. Three patients have died, all from progressive multiple myeloma. Early response assessments in 27 out of 32 patients show 2 VGPR, 7 PR, 6 MR, 8 SD, and 4 PD for a ≥MR rate of 56%. "
https://ash.confex.com/ash/2012/webprogram/Paper49589.html
As you can see, I have a much better treatment option available to me because my Doctor has a long term treatment strategy and does not just use the best drugs for long cycles upfront.
Mark
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Mark
Re: Looking for Feedback on Recommended First Round Treatmen
Hi Nancy,
Revlimid was available here before Velcade but to qualify to use it you had to have been treated with VAD (Vincristine, Adriomycin & Dex) first then thalidomide. When thalidomide failed then you would be eligible for Revlimid. Of course there is always the option of paying full price for it (1 month supply of Revlimid was ~ AU$34.50 (Pharmaceutical Benefit scheme)PBS) or without benefit $28,000). Velcade was later, it was available through the PBS ~ Oct 2010.
Libby
Revlimid was available here before Velcade but to qualify to use it you had to have been treated with VAD (Vincristine, Adriomycin & Dex) first then thalidomide. When thalidomide failed then you would be eligible for Revlimid. Of course there is always the option of paying full price for it (1 month supply of Revlimid was ~ AU$34.50 (Pharmaceutical Benefit scheme)PBS) or without benefit $28,000). Velcade was later, it was available through the PBS ~ Oct 2010.
Libby
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LibbyC - Name: LibbyC
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2009
- Age at diagnosis: 43