My wife was diagnosed November 2010 with stage 3 multiple myeloma and acute kidney failure. My wife was 38 years old, teaching full time, married with four daughters (from 4 to 15 years old). Devastating in the best description, she was given 3 years to live. Since then we have educated ourselves as to the mechanisms and treatment options available, and hence a little more optimistic. However we have come across an inherent problem with the Australian Medical system. The Australian people collectively cover the cost of treating cancer in Australia. They do this through extra payments made in their taxes (Medicare). Because of the collective nature of Medicare, the treatment of Multiple Myeloma seems to be based on cost first and treatment quality second.
We believed that treatments for this disease where both improving in activity (against the cancer) and patient tolerability, however when we suggested the use of novel agents in varying combinations, our hematologist appeared annoyed and disinterested. So we went to 2 more (including one of the top Australian guys) again we received similar reactions. Lenalidomide would only be given if the patient was very unwell (last resort) and combinations of novel agents such as Bortezomib and Lenalidomide would not be used due to the cost.
This has been my experience so far, I’m very disappointed that my wife (and my children’s mother) isn’t being given the best chance into the longer term, when so much is being done and achieved throughout the world.
I need help to explore other options as it seems that her multiple myeloma is becoming active again. If anyone here in Oz have had a better experience, especially in NSW please reply. I’m hoping to firstly persuade her current doctors (unlikely) to treat her holistically, using the best treatments available (not just the cheapest). If needed I’m prepared to travel within Australia firstly (and possibly overseas) to give my children more time with their mother.
So far
Original para protein 135
No bone involvment
Thalidomide, dex 8 months
Velcade 3 weeks
Pre Stem Cell 85
Auto SCT august 2011
Double carpal tunnel release surgery Dec 2011
Current m-spike at 29 and stable since SCT
Nose bleeds, back pain and uric acid levels are now on the rise. Hence the need for some direction. We have top private health insurance, but I believe in Australia that it makes no difference at all. Thank you in advance.
Forums
10 posts
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PaulN - Name: Paul
- Who do you know with myeloma?: Wife
- When were you/they diagnosed?: 2010
- Age at diagnosis: 38
Re: Australian Treatment Options
Hi PaulN!!
Has your wife had FISH tests to show whether she has cytogenetic abnormalities?
Has your wife had FISH tests to show whether she has cytogenetic abnormalities?
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suzierose - Name: suzierose
- When were you/they diagnosed?: 2 sept 2011
Re: Australian myeloma teatment options
HI Paul, I am very sorry to hear of your wife's struggles with myeloma. It's just not fair sometimes, and she is really young to have such a disease! I have been to your beautiful country and really loved Australia. it seems from the reports of people writing in to Forums that neither Australia nor New Zealand are very forthcoming on Revlimid treatments, for example. Sometimes local support groups band together and start lobbying their governments for approval of new cancer drugs. Once they are approved, would they be provided for patients by Medicare? I don't know the Australian system well enough to know whether you have one national system or go state by state in your health care. I guess that along with trying to get fellow Australians to share their experiences, you could start writing letters to the powers that be. There were 2 people from AU who wrote in a couple of days ago, actually, with their issues vis a vis Medicare. Hope you can get some more help for your wife at home, or explore other options also.
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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: Australian myeloma teatment options
Thanks for the reply
Yes she had a fish done at diagnosis. We asked for the results,and told that she was low risk but no other information was given . We asked for more info ? but it seems that her doctor likes to play his cards close to his chest or couldn't find them ?? either way thats all we have at the moment.
Yes she had a fish done at diagnosis. We asked for the results,and told that she was low risk but no other information was given . We asked for more info ? but it seems that her doctor likes to play his cards close to his chest or couldn't find them ?? either way thats all we have at the moment.
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PaulN - Name: Paul
- Who do you know with myeloma?: Wife
- When were you/they diagnosed?: 2010
- Age at diagnosis: 38
Re: Australian myeloma teatment options
Hi PaulN
O goodness!! ..sorry to hear your M.D. is 'close chested'...makes me wonder about his expertise. Afterall, why is he so 'close chested' about YOUR choices. I could see it, if it was HIS labs. But to not be forthcoming and divulge the specifics means he does not want to be challenged, on what HE has decided may or maynot be the best choices for you, as your choice could generate less revenues than his being omniscient about the tests. His being 'close chested' may mean extra revenue for him and he can convince patients to accept far more expensive choices based solely on his recommendation? I know that sounds cynical and I pray that is not the case.
FISH results are very important though, as they provide risk stratification in terms of outcomes. Patients with different cytogenetic abnormalities on FISH have different outcomes than those without anomalies shown on FISH. 75% of multiple myeloma patients are low or standard risk and that is a good thing as you . But what if you are in the other 25%?
Many stem cell transplant outcomes , have been shown to have dismal outcomes based on the FISH results...as well as positive outcomes for those without the negative prognostic factors FISH shows. A physician that is not forthcoming about all tests results is a physican you need to switch from. Perhaps, you want to go the hospital, independent of your physician, and ask to have the results of all medical tests your insurance paid for.
You need specifics. As that is how the clinical trial outcomes provide dismal/poor or GOOD outcomes.
I would even suggest that you 'demand' to see those results as they are important/critical to the choices you have as the results make you a more informed patient able to discern based on trial data your best choices.
Very sorry to hear that your wife is so young and has these health challenges. But it is vitally important that she/you be informed of all the results in order to make the best decisions for her and your family. Treatment decisions can change based on those results alone.
multiple myeloma is not a 'one case fits all" disease. Knowing specifics can make critical differences. If your insurance paid for the tests, you should have access and I would make every effort (demand) to see them so that you can factor all that into making a decision.
My heart goes out to you and I am sending you blessings of faith hope and love as well as wishing you positive outcomes.
O goodness!! ..sorry to hear your M.D. is 'close chested'...makes me wonder about his expertise. Afterall, why is he so 'close chested' about YOUR choices. I could see it, if it was HIS labs. But to not be forthcoming and divulge the specifics means he does not want to be challenged, on what HE has decided may or maynot be the best choices for you, as your choice could generate less revenues than his being omniscient about the tests. His being 'close chested' may mean extra revenue for him and he can convince patients to accept far more expensive choices based solely on his recommendation? I know that sounds cynical and I pray that is not the case.
FISH results are very important though, as they provide risk stratification in terms of outcomes. Patients with different cytogenetic abnormalities on FISH have different outcomes than those without anomalies shown on FISH. 75% of multiple myeloma patients are low or standard risk and that is a good thing as you . But what if you are in the other 25%?
Many stem cell transplant outcomes , have been shown to have dismal outcomes based on the FISH results...as well as positive outcomes for those without the negative prognostic factors FISH shows. A physician that is not forthcoming about all tests results is a physican you need to switch from. Perhaps, you want to go the hospital, independent of your physician, and ask to have the results of all medical tests your insurance paid for.
You need specifics. As that is how the clinical trial outcomes provide dismal/poor or GOOD outcomes.
I would even suggest that you 'demand' to see those results as they are important/critical to the choices you have as the results make you a more informed patient able to discern based on trial data your best choices.
Very sorry to hear that your wife is so young and has these health challenges. But it is vitally important that she/you be informed of all the results in order to make the best decisions for her and your family. Treatment decisions can change based on those results alone.
multiple myeloma is not a 'one case fits all" disease. Knowing specifics can make critical differences. If your insurance paid for the tests, you should have access and I would make every effort (demand) to see them so that you can factor all that into making a decision.
My heart goes out to you and I am sending you blessings of faith hope and love as well as wishing you positive outcomes.
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suzierose - Name: suzierose
- When were you/they diagnosed?: 2 sept 2011
Re: Australian myeloma teatment options
Hi Paul,
Like the others who already have responded, I'm very sorry to hear of your wife's situation. I believe, though, with some continued hard work on your part, you are likely to get her some additional treatments that will help her out tremendously.
If you just search here in the forums for the word "Australia", you will find a number of other forum members from Australia. I would suggest looking at their user profiles and what they've posted and, if they seem interesting, perhaps email or private message them to ask for some guidance or suggestions.
I remember one Australian forum member, in particular, who has received a wide range of treatments for his myeloma, and was doing well the last time we heard from him. Coincidentally, his name is Paul! Here is his profile:
https://myelomabeacon.org/forum/memberlist.php?mode=viewprofile&u=281
Perhaps you want to private message him and see if he can provide any helpful tips.
Good luck!
Like the others who already have responded, I'm very sorry to hear of your wife's situation. I believe, though, with some continued hard work on your part, you are likely to get her some additional treatments that will help her out tremendously.
If you just search here in the forums for the word "Australia", you will find a number of other forum members from Australia. I would suggest looking at their user profiles and what they've posted and, if they seem interesting, perhaps email or private message them to ask for some guidance or suggestions.
I remember one Australian forum member, in particular, who has received a wide range of treatments for his myeloma, and was doing well the last time we heard from him. Coincidentally, his name is Paul! Here is his profile:
https://myelomabeacon.org/forum/memberlist.php?mode=viewprofile&u=281
Perhaps you want to private message him and see if he can provide any helpful tips.
Good luck!
Re: Australian myeloma teatment options
I thank all of you for your kind words. I’ll certainly take your suggestions on board. I’m fully committed to finding the best outcome for Sandee and my girls, I couldn’t live with myself otherwise. There seems to be reluctance from some Australian Specialist to embrace the new multipronged approach when fighting multiple myeloma (my impression so far) which worries me that they might not embrace newer advanced treatments if and when they become available. As suggested I plan to search through your forums for other Australians in the same position (I’ve searched for a Australian specific forum for multiple myeloma, none exist currently) hence my use of your wonderful web site to reach out. Thank you again
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PaulN - Name: Paul
- Who do you know with myeloma?: Wife
- When were you/they diagnosed?: 2010
- Age at diagnosis: 38
Re: Australian myeloma teatment options
Hi Paul, I,m in Australia based in Melbourne. I'm on a Revlimid trial ,with dex now finished, and started on prednisolone. Back pain and fatigue are my big issues after being diagnosed in 2011 after a tumour raised its ugly head.
I commenced the trial after being tracked down due to my youngish age, 53.
Off work, no golf, daily pills and monthly zometa and checkups.
Let me know if you need any information via this spot and I,ll do what I can to help.
I commenced the trial after being tracked down due to my youngish age, 53.
Off work, no golf, daily pills and monthly zometa and checkups.
Let me know if you need any information via this spot and I,ll do what I can to help.
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Alan
Re: Australian myeloma teatment options
Alan wrote:
> Hi Paul, I,m in Australia based in Melbourne. I'm on a Revlimid trial
> ,with dex now finished, and started on prednisolone. Back pain and fatigue
> are my big issues after being diagnosed in 2011 after a tumour raised its
> ugly head.
> I commenced the trial after being tracked down due to my youngish age, 53.
> Off work, no golf, daily pills and monthly zometa and checkups.
> Let me know if you need any information via this spot and I,ll do what I
> can to help.
If there is any way to get off the Zometa, do so and stay away from Aredia as well, if possible.
This same warning pertains to Aredia as well.
"You should know that zoledronic acid may cause osteonecrosis of the jaw (ONJ, a serious condition of the jaw bone), especially if you have dental surgery or treatment while you are using the medication. A dentist should examine your teeth and perform any needed treatments, including cleaning, before you start to use zoledronic acid. Be sure to brush your teeth and clean your mouth properly while you are using zoledronic acid. Talk to your doctor before having any dental treatments while you are using this medication."
I was diagnosed in 2000, at the age of 51, when I broke my left humerus. After undergoing the VAD treatment I had a stem cell transplantation in January of 2001. I've undergone nearly all the treatments available, though not all and also was on methylprednisilone and the Aredia and Zometa treatments. I contracted ONJ in 2003 and after a good amount of research it was determined that one or the other, or both the infusion drugs were the cause.
I suggest getting as educated as possible on multiple myeloma, how it works and treatment possibilities. There are advances being made yearly and the life expectancy after contraction of the disease is increasiing.
Best of Luck with your treatments.
> Hi Paul, I,m in Australia based in Melbourne. I'm on a Revlimid trial
> ,with dex now finished, and started on prednisolone. Back pain and fatigue
> are my big issues after being diagnosed in 2011 after a tumour raised its
> ugly head.
> I commenced the trial after being tracked down due to my youngish age, 53.
> Off work, no golf, daily pills and monthly zometa and checkups.
> Let me know if you need any information via this spot and I,ll do what I
> can to help.
If there is any way to get off the Zometa, do so and stay away from Aredia as well, if possible.
This same warning pertains to Aredia as well.
"You should know that zoledronic acid may cause osteonecrosis of the jaw (ONJ, a serious condition of the jaw bone), especially if you have dental surgery or treatment while you are using the medication. A dentist should examine your teeth and perform any needed treatments, including cleaning, before you start to use zoledronic acid. Be sure to brush your teeth and clean your mouth properly while you are using zoledronic acid. Talk to your doctor before having any dental treatments while you are using this medication."
I was diagnosed in 2000, at the age of 51, when I broke my left humerus. After undergoing the VAD treatment I had a stem cell transplantation in January of 2001. I've undergone nearly all the treatments available, though not all and also was on methylprednisilone and the Aredia and Zometa treatments. I contracted ONJ in 2003 and after a good amount of research it was determined that one or the other, or both the infusion drugs were the cause.
I suggest getting as educated as possible on multiple myeloma, how it works and treatment possibilities. There are advances being made yearly and the life expectancy after contraction of the disease is increasiing.
Best of Luck with your treatments.
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Bill M
Re: Australian myeloma teatment options
Hi Paul
Im from Australia too and was reading your story and found this Medicare web page which might give you some further information http://www.medicareaustralia.gov.au/provider/pbs/drugs2/myeloma.jsp
Im 40 and known about having Myeloma for just over a year and had CTD for 4 rounds and 2 x SCT
and am currenly classed as stable because my myeloma has hovered steady between 9 - 12 since november last year and the only drugs I get are zometta once every 2 months.
Having talked to my Doctor he says that there would be no trouble getting any of the PBS drugs when I need them.
Im from Australia too and was reading your story and found this Medicare web page which might give you some further information http://www.medicareaustralia.gov.au/provider/pbs/drugs2/myeloma.jsp
Im 40 and known about having Myeloma for just over a year and had CTD for 4 rounds and 2 x SCT
and am currenly classed as stable because my myeloma has hovered steady between 9 - 12 since november last year and the only drugs I get are zometta once every 2 months.
Having talked to my Doctor he says that there would be no trouble getting any of the PBS drugs when I need them.
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Paul Burgess
10 posts
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