My name is Greg and I was diagnosed (at 52) with multiple myeloma early February 2016. I spent a week in hospital getting condition under control.
I have been receiving chemo since being discharged from hospital about 6 weeks ago. I will continue receiving chemo for approximately the next 4 months. I will then be put back into hospital for a treatment of chemo and a stem cell transplant.
Just wondering if anyone else has had similar treatment and, if so, how did it go.
What can I expect is what I'm asking.
Forums
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GregSydney - Name: Greg
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2016
- Age at diagnosis: 52
Re: Newly diagnosed - have you had treatment like mine?
Hi my friend,
I was there back in January 2012 when I was 58 and I received the 'chemo,' which was actually not regular chemo, but the newer novel therapies of Velcade and Revlimid, along with dexamethasone. This is really the standard treatment and generally gives good results for the vast majority of patients. The only 'true' chemo I received was for the harvesting of stem cells, which are still in deep-freeze should they be needed in the future. I did not receive a bone marrow transplant by personal choice.
I have enjoyed four years of remission from the disease, the main side effect being some numbness in the feet, which is called peripheral neuropathy.
Try to be positive because the treatments are effective and, at your young age, you will probably respond quickly and let's hope that the even newer treatments which are in the pipeline will turn multiple myeloma into a chronic disease before too long, like diabetes.
I hope all goes well. Ian
I was there back in January 2012 when I was 58 and I received the 'chemo,' which was actually not regular chemo, but the newer novel therapies of Velcade and Revlimid, along with dexamethasone. This is really the standard treatment and generally gives good results for the vast majority of patients. The only 'true' chemo I received was for the harvesting of stem cells, which are still in deep-freeze should they be needed in the future. I did not receive a bone marrow transplant by personal choice.
I have enjoyed four years of remission from the disease, the main side effect being some numbness in the feet, which is called peripheral neuropathy.
Try to be positive because the treatments are effective and, at your young age, you will probably respond quickly and let's hope that the even newer treatments which are in the pipeline will turn multiple myeloma into a chronic disease before too long, like diabetes.
I hope all goes well. Ian
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Ian Forsyth
Re: Newly diagnosed - have you had treatment like mine?
The standard of care is Revlimid (pill), Velcade (shot), dexamethasone (pill). My husband is 48 and had this treatment.
You probably see a local hematologist/oncologist. These people work on many blood cancers. Most multiple myeloma patients will tell you to also find a myeloma specialist. You may have to drive a couple of hours but your specialist and local hema/onc can co-manage you.
If you post where you live, people on this forum can inform you of the specialists close to you.
You probably see a local hematologist/oncologist. These people work on many blood cancers. Most multiple myeloma patients will tell you to also find a myeloma specialist. You may have to drive a couple of hours but your specialist and local hema/onc can co-manage you.
If you post where you live, people on this forum can inform you of the specialists close to you.
Re: Newly diagnosed - have you had treatment like mine?
Could I ever so humbly suggest that we try to limit how much we use the phrase "standard of care" here in the forum? I would go as far as suggesting we just get rid of the phrase completely.
There are people here in the forum from all over the world. So even if there were a "standard of care" in, say, the United States, that doesn't mean it's the standard of care in other countries. Let's not be provincial and think that just because myeloma specialists do things where we are, all myeloma specialists should do it that way.
Second, and even more importantly, there are few things in multiple myeloma that are truly "standard of care". I realize you hear a lot of myeloma specialists use the term, but it's usually the ones who are consciously, or unconsciously, being sneaky. They use the phrase to try to convince people to believe their point of view. If they were honest, they would say "should be the standard of care, in my opinion", rather than just "standard of care."
For example, you'll hear a lot of European myeloma specialists – particularly who also specialize in transplantation – say that transplantation is the standard of care for transplant-eligible myeloma patients. Yet all of us here know that view isn't necessarily widely held here in the U.S., as Mark has made very clear by the statistics he has shared showing that transplantation isn't necessarily that common in newly diagnosed U.S. patients.
You'll also hear some specialists say that Velcade-based therapy is "standard of care", when there are other specialists who believe immunomodulatory agents are an important part of therapy.
So, if we are going to use the term "standard of care", let's be really, really certain that we know it's okay to do that. And, in most cases, it probably isn't okay.
There are people here in the forum from all over the world. So even if there were a "standard of care" in, say, the United States, that doesn't mean it's the standard of care in other countries. Let's not be provincial and think that just because myeloma specialists do things where we are, all myeloma specialists should do it that way.
Second, and even more importantly, there are few things in multiple myeloma that are truly "standard of care". I realize you hear a lot of myeloma specialists use the term, but it's usually the ones who are consciously, or unconsciously, being sneaky. They use the phrase to try to convince people to believe their point of view. If they were honest, they would say "should be the standard of care, in my opinion", rather than just "standard of care."
For example, you'll hear a lot of European myeloma specialists – particularly who also specialize in transplantation – say that transplantation is the standard of care for transplant-eligible myeloma patients. Yet all of us here know that view isn't necessarily widely held here in the U.S., as Mark has made very clear by the statistics he has shared showing that transplantation isn't necessarily that common in newly diagnosed U.S. patients.
You'll also hear some specialists say that Velcade-based therapy is "standard of care", when there are other specialists who believe immunomodulatory agents are an important part of therapy.
So, if we are going to use the term "standard of care", let's be really, really certain that we know it's okay to do that. And, in most cases, it probably isn't okay.
Re: Newly diagnosed - have you had treatment like mine?
Well said Cheryl.
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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 - have you had treatment like mine?
Thanks Cheryl, for your perceptions on 'standard of care'.
I am not a doctor, but I don't think we could get Revlimid plus Velcade as front line therapy in Canada. Not even sure if Revlimid is approved for that yet! So, it would be Velcade plus perhaps some other drugs such as dexamethasone, Cytoxan or other. If the patient does not respond to the front line treatment, then other treatments can be used. And, of course, in the case of auto stem cell transplants, not everyone is 'eligible' for that, or wants to have a transplant.
I do appreciate that treatments vary from one country to another. That doesn't stop us from all learning from each other though!
' Welcome spring' to all (unless you are in the southern hemisphere, and then 'welcome autumn'!), and hope you are having a nice weekend ... Nancy
I am not a doctor, but I don't think we could get Revlimid plus Velcade as front line therapy in Canada. Not even sure if Revlimid is approved for that yet! So, it would be Velcade plus perhaps some other drugs such as dexamethasone, Cytoxan or other. If the patient does not respond to the front line treatment, then other treatments can be used. And, of course, in the case of auto stem cell transplants, not everyone is 'eligible' for that, or wants to have a transplant.
I do appreciate that treatments vary from one country to another. That doesn't stop us from all learning from each other though!
' Welcome spring' to all (unless you are in the southern hemisphere, and then 'welcome autumn'!), and hope you are having a nice weekend ... Nancy
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Newly diagnosed - have you had treatment like mine?
I would like to expand a little on this because I am sure 'Irankin' and myself are merely trying to reassure GregSydney that the relatively new treatments have transformed myeloma outcomes and that their side effects are such that it may be possible to continue a near-normal life during and after treatment.
My country is France, and back in 2012, I was pressured to accept the stem cell transplant, which I was told by the CHU de Toulouse was certainly the 'reference treatment'. It was my personal choice to opt instead for a clinical trial (IFM/DFCI 2009) coordinated by Prof. Michel Attal, which enabled me to receive the Velcade / Revlimid / dexamethasone treatment only, my group to be compared with the group who would then go onto receive an 'autogreffe' , i.e, stem cell transplant using their own harvested stem cells. I was told this past week that the five-year study is showing very high survival rates in both groups and apparently little difference whether they had a transplant at the beginning or not. I will try to give you the final results at the end of the year.
I believe the future will bring treatments increasingly tailored for the individual because no two patients are alike but, sadly, as Cheryl has pointed out, some countries may be more reluctant than others to approve treatments, which can be very expensive.
Kind regards to all.
My country is France, and back in 2012, I was pressured to accept the stem cell transplant, which I was told by the CHU de Toulouse was certainly the 'reference treatment'. It was my personal choice to opt instead for a clinical trial (IFM/DFCI 2009) coordinated by Prof. Michel Attal, which enabled me to receive the Velcade / Revlimid / dexamethasone treatment only, my group to be compared with the group who would then go onto receive an 'autogreffe' , i.e, stem cell transplant using their own harvested stem cells. I was told this past week that the five-year study is showing very high survival rates in both groups and apparently little difference whether they had a transplant at the beginning or not. I will try to give you the final results at the end of the year.
I believe the future will bring treatments increasingly tailored for the individual because no two patients are alike but, sadly, as Cheryl has pointed out, some countries may be more reluctant than others to approve treatments, which can be very expensive.
Kind regards to all.
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Ian Forsyth
Re: Newly diagnosed - have you had treatment like mine?
I think that 'standard of care' must be just an expression! It does vary from one country to the next, etc., as to what is available. Best is to try to analyze what is available to one, whether it be provided routinely to myeloma patients, or as clinical trials.
Good for you, Ian, that you achieved such good results with the RVD clinical trial! I think that I have read studies that show that it is a good treatment also.
Greg, if you provide more information about where you are, readers could direct you to facilities near you. Right now, in the world of myeloma treatments, there is quite a variety of approaches to treating the disease. I don't think that what I did six years ago is necessarily the 'norm' now though ... that was Velcade / dex induction / stem cell transplant / Revlimid / 3 1/2 years remission with no drugs / Revlimid plus dex now!
Good for you, Ian, that you achieved such good results with the RVD clinical trial! I think that I have read studies that show that it is a good treatment also.
Greg, if you provide more information about where you are, readers could direct you to facilities near you. Right now, in the world of myeloma treatments, there is quite a variety of approaches to treating the disease. I don't think that what I did six years ago is necessarily the 'norm' now though ... that was Velcade / dex induction / stem cell transplant / Revlimid / 3 1/2 years remission with no drugs / Revlimid plus dex now!
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Newly diagnosed - have you had treatment like mine?
Thank you, Ian. 4 years in remission is promising. I am also being treated with Velcade, so your story gives me a bit more hope. Obviously everyone will respond differently, so it's a wait and see I guess.
Thanks again,
Greg
Thanks again,
Greg
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GregSydney - Name: Greg
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2016
- Age at diagnosis: 52
Re: Newly diagnosed - have you had treatment like mine?
lrankin wrote:
Thank you, Irankin. I've taken your advice and updated my profile.
Cheers,
Greg
If you post where you live, people on this forum can inform you of the specialists close to you.
Thank you, Irankin. I've taken your advice and updated my profile.
Cheers,
Greg
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GregSydney - Name: Greg
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2016
- Age at diagnosis: 52
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