Greg - Welcome to the forum, and I'm sorry about your diagnosis. You've found a wonderful resource and community; let us know how we can help.
There are a number of Australian myeloma specialists included in this list of respected international myeloma specialists.
Also, here is a list of Australia- and Sydney-related forum discussions. There are quite a number of forum members from Australia.
Ian and LRankin - I'm sorry if my previous post in this thread made it seem that I didn't appreciate your efforts to welcome and help Greg. That was not right, and it certainly wasn't my intention. I've just spent enough time here in the forum to realize it is a very international community, and I don't want anyone – especially newcomers – to be frightened or scared because someone says something without remembering how geographically diverse a community we are.
Ian - Key results of the trial you've been participating in have been announced. They were presented at the ASH meeting this December. I posted about it here in the forum:
"Initial results: key stem cell transplant clinical trial" (Nov 5, 2015)
and Dr. Vij also discussed the trial findings in his recent "Myeloma Quiz" here at The Beacon (see question #2).
Multibilly - As always, I appreciate your feedback.
Nancy - Thank you for your comments. I really do think "standard of care" is a phrase that is misused, and I worry that its misuse is not entirely innocent.
Forums
Re: Newly diagnosed - have you had treatment like mine?
These are the best of times, these are the worst of times, to paraphrase great works of literature. In the case of myeloma, the best of times are still a long way off. The exciting news is the wonderful support and the wealth of information that one will find on this site. Things are happening around myeloma with the new drugs and other treatments available all around the world.
These are the worst of times, Your journey is just beginning, the worst part will be not knowing what will be the next thing to happen. Will I handle the chemo well? Will I find all the answers to my questions? Will I find all the questions to ask? Not knowing will be the toughest part, but this forum is a place to ask and be answered, in terms that you can understand.
If you read my story, and others here, you will see that you are not alone. Fight the good fight, and ask all the questions that come to mind.
These are the worst of times, Your journey is just beginning, the worst part will be not knowing what will be the next thing to happen. Will I handle the chemo well? Will I find all the answers to my questions? Will I find all the questions to ask? Not knowing will be the toughest part, but this forum is a place to ask and be answered, in terms that you can understand.
If you read my story, and others here, you will see that you are not alone. Fight the good fight, and ask all the questions that come to mind.
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Jfosntampa - Name: John Foster
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: June 2013
- Age at diagnosis: 58
Re: Newly diagnosed - have you had treatment like mine?
Cheryl,
You make a great point about the term "standard of care." Sometimes "standard of care" is pretty cut and dried, and sometimes it's pretty nebulous. In myeloma, it's pretty squarely in the "nebulous" category. However, it's probably not practical (or even possible) to mandate that we stop using it. People will be hearing it used by their doctors all the time along the way, so it's going to come up. It's not a completely irrelevant term as long as one makes it clear which part of the world is being referred to.
You make a great point about the term "standard of care." Sometimes "standard of care" is pretty cut and dried, and sometimes it's pretty nebulous. In myeloma, it's pretty squarely in the "nebulous" category. However, it's probably not practical (or even possible) to mandate that we stop using it. People will be hearing it used by their doctors all the time along the way, so it's going to come up. It's not a completely irrelevant term as long as one makes it clear which part of the world is being referred to.
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CathyAnn - Name: CathyAnnCleveland
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 1/22/2016
- Age at diagnosis: 56
Re: Newly diagnosed - have you had treatment like mine?
I think a fair point on the term "standard of care". I appreciate those who understood my intent and glad I was able to provide a helpful suggestion on finding a myeloma specialist.
The other suggestion I will make is to keep using the Beacon. What a great name for it. It has been a source to light our way on this decision path to next treatments or to ask questions to understand. So grateful for the Beacon.
The other suggestion I will make is to keep using the Beacon. What a great name for it. It has been a source to light our way on this decision path to next treatments or to ask questions to understand. So grateful for the Beacon.
Re: Newly diagnosed - have you had treatment like mine?
Hello Irankin:
Clearly you were trying to provide some basic info and advice to a "NewB". Great job and please keep it up.
I never thought that the term "standard of care" was a "hot button", so I respectfully disagree with Cheryl, who I typically view as a great poster.
When we originally were put in the need to do heavy duty research for my wife in August of 2014, I found that there were five major hospitals in the New York City area. I am not qualified to explain in detail all their approaches, but of the five, there were arguably four different approaches between the centers, which differed in the emphasis on clinical trials, transplant and maintenance. So standard of care does not only differ from country to country, it differs from hospital to hospital.
So Cheryl is exactly right in that it is not a "global" term, but if you look it at as the standard of care for an individual institution, it is actually the correct terminology (IMHO). Generally in the US, back in 2014, the SOC in induction for transplant eligible people was one of two regimens, RVD or CyBorD. Transplant was recommended after initial induction or at first relapse. Today, as per the MSmart example, it is moving more towards RVD, and there are clinical trials out there looking at trying to avoid a transplant in favor of the new novel agents.
Hope this is helpful. Regards,
Clearly you were trying to provide some basic info and advice to a "NewB". Great job and please keep it up.
I never thought that the term "standard of care" was a "hot button", so I respectfully disagree with Cheryl, who I typically view as a great poster.
When we originally were put in the need to do heavy duty research for my wife in August of 2014, I found that there were five major hospitals in the New York City area. I am not qualified to explain in detail all their approaches, but of the five, there were arguably four different approaches between the centers, which differed in the emphasis on clinical trials, transplant and maintenance. So standard of care does not only differ from country to country, it differs from hospital to hospital.
So Cheryl is exactly right in that it is not a "global" term, but if you look it at as the standard of care for an individual institution, it is actually the correct terminology (IMHO). Generally in the US, back in 2014, the SOC in induction for transplant eligible people was one of two regimens, RVD or CyBorD. Transplant was recommended after initial induction or at first relapse. Today, as per the MSmart example, it is moving more towards RVD, and there are clinical trials out there looking at trying to avoid a transplant in favor of the new novel agents.
Hope this is helpful. Regards,
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JPC - Name: JPC
Re: Newly diagnosed - have you had treatment like mine?
My husband was diagnosed in December of 2015 at the age of 58 and has six of his weekly CyBorD chemo treatments left and then on to his stem cell transplant. We see a myeloma specialist in Nashville TN and he feels very optimistic that this course of treatment is his best for a longer term remission state. He also said that at a myeloma conference he attended in December the "buzz" word was cure ... or at the very least that myeloma will be treated as a chronic illness such as diabetes soon.
Good luck to you on your journey and you have found a great place.
Good luck to you on your journey and you have found a great place.
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dogmom - Who do you know with myeloma?: husband
- When were you/they diagnosed?: December 2015
- Age at diagnosis: 58
Re: Newly diagnosed - have you had treatment like mine?
Good discussion in this thread.
Great point, CherylG:
Well said, Jfosntampa
Great improvements for sure, but still a LONG way away from myeloma being curable or chronic for the majority of patients.
Hi Dogmom - As opposed to myeloma being chronic like diabetes, ask him how long it will be until myeloma is chronic like another blood cancer, CML, through use of Gleevec or another TKI. This is what a chronic blood cancer looks like. These patients take 1 drug and do not relapse.
"At 10 years, progression-free survival was 82%, overall survival 84%, 59% achieved MR(5), 72% MR(4.5), 81% MR(4), 89% major molecular remission and 92% MR(2) (molecular equivalent to complete cytogenetic remission)."
Source: L Kalmanti et al, "Safety and efficacy of imatinib in CML over a period of 10 years: data from the randomized CML-study IV," Leukemia, May 2015 (abstract)
I think it is safe to say we are a long way from 82% of myeloma patients not relapsing in 10 years using all the available therapies we have, never mind using only one drug.
Great point, CherylG:
I really do think "standard of care" is a phrase that is misused, and I worry that its misuse is not entirely innocent.
Well said, Jfosntampa
These are the best of times, these are the worst of times, to paraphrase great works of literature. In the case of myeloma, the best of times are still a long way off. The exciting news is the wonderful support and the wealth of information that one will find on this site. Things are happening around myeloma with the new drugs and other treatments available all around the world.
Great improvements for sure, but still a LONG way away from myeloma being curable or chronic for the majority of patients.
Hi Dogmom - As opposed to myeloma being chronic like diabetes, ask him how long it will be until myeloma is chronic like another blood cancer, CML, through use of Gleevec or another TKI. This is what a chronic blood cancer looks like. These patients take 1 drug and do not relapse.
"At 10 years, progression-free survival was 82%, overall survival 84%, 59% achieved MR(5), 72% MR(4.5), 81% MR(4), 89% major molecular remission and 92% MR(2) (molecular equivalent to complete cytogenetic remission)."
Source: L Kalmanti et al, "Safety and efficacy of imatinib in CML over a period of 10 years: data from the randomized CML-study IV," Leukemia, May 2015 (abstract)
I think it is safe to say we are a long way from 82% of myeloma patients not relapsing in 10 years using all the available therapies we have, never mind using only one drug.
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Mark11
Re: Newly diagnosed - have you had treatment like mine?
I appreciate the additional comments from everyone about what they feel "standard of care" means.
Typically when "standard of care" is used, it is not meant to refer to what is done at a single institution. When a myeloma specialist says, for example, that maintenance with Revlimid, Velcade, and dexamethasone should be the standard of care in high-risk myeloma patients, she or he is making this recommendation broadly. I'd go so far as to say that, typically, the recommendation is meant to be universal.
The National Cancer Institute definition of "standard of care" is:
"Treatment that is accepted by medical experts as a proper treatment for a certain type of disease and that is widely used by healthcare professionals. Also called best practice, standard medical care, and standard therapy."
I think I've raised sensitivity on this issue enough to leave it alone at this point.
Typically when "standard of care" is used, it is not meant to refer to what is done at a single institution. When a myeloma specialist says, for example, that maintenance with Revlimid, Velcade, and dexamethasone should be the standard of care in high-risk myeloma patients, she or he is making this recommendation broadly. I'd go so far as to say that, typically, the recommendation is meant to be universal.
The National Cancer Institute definition of "standard of care" is:
"Treatment that is accepted by medical experts as a proper treatment for a certain type of disease and that is widely used by healthcare professionals. Also called best practice, standard medical care, and standard therapy."
I think I've raised sensitivity on this issue enough to leave it alone at this point.
Re: Newly diagnosed - have you had treatment like mine?
Hi GregSydney,
My wife was diagnosed with IgA kappa, high protein level, but no other symptoms. Due to her cytogenetics, they decided on 4 months of weekly CyBorD, monthly Aredia (pamidronate), then a tandem transplant. Seems to depend on what regimen is approved / covered by health authorities, combined with the myeloma specialist's preference towards what's available.
We live in Canada where each province has its list of approved first line then follow-up protocol.
Wish you the best of luck.
My wife was diagnosed with IgA kappa, high protein level, but no other symptoms. Due to her cytogenetics, they decided on 4 months of weekly CyBorD, monthly Aredia (pamidronate), then a tandem transplant. Seems to depend on what regimen is approved / covered by health authorities, combined with the myeloma specialist's preference towards what's available.
We live in Canada where each province has its list of approved first line then follow-up protocol.
Wish you the best of luck.
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SK1 - Name: SK
- Who do you know with myeloma?: Spouse
- When were you/they diagnosed?: June 2015
- Age at diagnosis: 62
Re: Newly diagnosed - have you had treatment like mine?
lrankin wrote:
Iranklin - The customary first line of treatment in the United States is Revlimid, Velcade and dexamethasone. However, in Australia and Canada (brothers from the same mother
), the first line of treatment is generally CyBorD (cyclophosphamide, Velcade, and dex).
I've edited the original version of this post as "standard of care" is not a term I would like to use, as it may imply that someone receiving, for instance, thalidomide with dex, is receiving substandard care. There may be valid medical reasons for a haemotologist to select thalidomide with dex over Revlimid or Velcade.
The standard of care is Revlimid (pill), Velcade (shot), dexamethasone (pill). My husband is 48 and had this treatment.
Iranklin - The customary first line of treatment in the United States is Revlimid, Velcade and dexamethasone. However, in Australia and Canada (brothers from the same mother
), the first line of treatment is generally CyBorD (cyclophosphamide, Velcade, and dex).I've edited the original version of this post as "standard of care" is not a term I would like to use, as it may imply that someone receiving, for instance, thalidomide with dex, is receiving substandard care. There may be valid medical reasons for a haemotologist to select thalidomide with dex over Revlimid or Velcade.
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Little Monkey - Name: Little Monkey
- Who do you know with myeloma?: Father-stage 1 multiple myeloma
- When were you/they diagnosed?: March/April of 2015
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