Hello,
I'm from Australia also & am finding it difficult to navigate this multiple myeloma situation. I was diagnosed 6 weeks ago, it was very sudden & shocking as I'm a 42yr old sole mother to an 8mth daughter, 23mth old son & 6 year old son. I do have significant bone lesions in my right arm, can't drive or care for my children now, para protein level was 52% when diagnosed, now 41% after one cycle Velcade/dex/cyclo-something. The terminology seems to change to suit whoever I'm talking to. My treatment started urgently & we are hoping for Stem cell transplant in December. I'm scared out of my mind. I like this forum for its human touch, I'm aware we do things differently in OZ in regards to treatment & it seems we do not have access to trials & new drugs like Europe. I was also told my condition is fatal & without a try at treatment & transplant I had 6 months to live, but others live with multiple myeloma for many years???? Who knows what's in store for us & I'm not asking for years but geez....I would love to see my little girl walk just once.
Good luck & Blessings from Central coast, NSW.
Forums
9 posts
• Page 1 of 1
-
Justine - Name: Justine Ryder
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: August 2013
Re: Young multiple myeloma mother from Australia
Hi Justine, Thanks for sharing your story, and I am wishing you really good fortune with your myeloma treatments. it sounds as if the VDC treatment is working really well already!
There are other patients from Australia who post on this forum too...it is quite international (I am from Canada).
Yes, there is an almost overwhelming amount to learn about this disease, and one can learn a lot from reading on the Beacon. Also, you could contact the International Myeloma Fdn., by email, and they will send you booklets by email or snail mail! I think I read recently that there is also a Myeloma Fdn. for patients in AU. probably someone from Au could give you some insight on that.
There are other patients from Australia who post on this forum too...it is quite international (I am from Canada).
Yes, there is an almost overwhelming amount to learn about this disease, and one can learn a lot from reading on the Beacon. Also, you could contact the International Myeloma Fdn., by email, and they will send you booklets by email or snail mail! I think I read recently that there is also a Myeloma Fdn. for patients in AU. probably someone from Au could give you some insight on that.
-
Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Young multiple myeloma mother from Australia
I learned from reading a post on Pat Killingsworth's blog that in Australia there is the Australian Myeloma Fdn. They will take calls toll free from around the country and apparently you may speak with a nurse about myeloma-related concerns...hope that helps you find more information too!
-
Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Young multiple myeloma mother from Australia
Hello -- I am sending you well wishes and hopes for continued response to the treatment protocol you are doing in Australia.
I know from the research and studies here in US that it takes several cycles of treatment, approximately 4-6 months for most to see notable improvement or reduction of myeloma cells to status of partial remission or better with induction therapies and then SOC (standard of care) here in US is usually Stem Cell collection and transplant but our NIH team recommends doing 8 months then 1 to 2 years of maintenance without Stem Cell unless non responsive to chemo protocol. Every center of excellence or multiple myeloma specialist has their own set of protocols they use and it depends on individual patient response and profile. If you feel you don't have the very best working with you and can get a second opinion that might be a way to validate or compare options. We immediately left our first oncologist because we felt he wasn't aggressive enough given our staging at the time and that opened the door to a another oncologist who actually referred us into NIH as our best option at the time vs. treating us even though this oncologist was also a leading expert locally in multiple myeloma. I feel that my husband wouldn't be with us today if we had stayed with the first option. They used Carfilzomib along with Dex and Revlimid as a first line therapy vs. for refractory use and it worked for us at least for getting the cancer into this first phase of control.
I would look at the MMRF website and others that are listed here for guidelines and information on how to understand your medical records and the information your Dr provides to help you become empowered to guide your treatment plans. I also sought out integrative medicine and nutritional information to help support the daily chemo process and build my hubby's immune system after several set backs. But that is a personal choice.
Sending you healing wishes.
KP
I know from the research and studies here in US that it takes several cycles of treatment, approximately 4-6 months for most to see notable improvement or reduction of myeloma cells to status of partial remission or better with induction therapies and then SOC (standard of care) here in US is usually Stem Cell collection and transplant but our NIH team recommends doing 8 months then 1 to 2 years of maintenance without Stem Cell unless non responsive to chemo protocol. Every center of excellence or multiple myeloma specialist has their own set of protocols they use and it depends on individual patient response and profile. If you feel you don't have the very best working with you and can get a second opinion that might be a way to validate or compare options. We immediately left our first oncologist because we felt he wasn't aggressive enough given our staging at the time and that opened the door to a another oncologist who actually referred us into NIH as our best option at the time vs. treating us even though this oncologist was also a leading expert locally in multiple myeloma. I feel that my husband wouldn't be with us today if we had stayed with the first option. They used Carfilzomib along with Dex and Revlimid as a first line therapy vs. for refractory use and it worked for us at least for getting the cancer into this first phase of control.
I would look at the MMRF website and others that are listed here for guidelines and information on how to understand your medical records and the information your Dr provides to help you become empowered to guide your treatment plans. I also sought out integrative medicine and nutritional information to help support the daily chemo process and build my hubby's immune system after several set backs. But that is a personal choice.
Sending you healing wishes.
KP
-
Catalystmom - Name: Kpatel
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: April 2012
- Age at diagnosis: 49
Re: Young multiple myeloma mother from Australia
Be careful about what you read on line. Some of the information is old and will scare you. You are still in that shock/panic/I can't believe this is happening stage which is quite frightening. It sounds like you are responding well to the treatment that you are receiving. Try to take a deep breath and relax a little bit. Take the advice of the others who have posted and contact the Australian Myeloma Foundation, the International Myeloma Foundation (IMF) and the Multiple Myleoma Research Foundation (MMRF). They have the most up to date information and can help you with all kinds of resources. Ask if there is a support group in your area that you can go to. Otherwise continuing to post and ask questions here is really helpful.
There are many of us on this forum who have been in your shoes, well maybe not as single mothers with as young children as you, and have come through the initial stages of shock and treatment quite well. With the appropriate treatment for your particular disease, you likely will have many years with your children. I am living with bone lesions throughout my body and it hasn't limited me too much in what I do. I have had a stem cell transplant and returned to work full time for 3 years following it before deciding to retire because of age, not because of multiple myeloma.
Good luck in the continued good response to your treatment,
Nancy in Phila
multiple myeloma '08, ASCT 1/10
There are many of us on this forum who have been in your shoes, well maybe not as single mothers with as young children as you, and have come through the initial stages of shock and treatment quite well. With the appropriate treatment for your particular disease, you likely will have many years with your children. I am living with bone lesions throughout my body and it hasn't limited me too much in what I do. I have had a stem cell transplant and returned to work full time for 3 years following it before deciding to retire because of age, not because of multiple myeloma.
Good luck in the continued good response to your treatment,
Nancy in Phila
multiple myeloma '08, ASCT 1/10
-
NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: Young multiple myeloma mother from Australia
Hi Justine,
I am in Australia too and also young-ish (for multiple myeloma at least) with kids at home. PM me if you want to chat about things - I'm on the North Shore of Sydney. I think every Myeloma is a different so its hard to generalise but treatments have come a long way over the last few years.
Regards,
Peter
I am in Australia too and also young-ish (for multiple myeloma at least) with kids at home. PM me if you want to chat about things - I'm on the North Shore of Sydney. I think every Myeloma is a different so its hard to generalise but treatments have come a long way over the last few years.
Regards,
Peter
-
PeterSydney - Name: Peter Mansfield
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2011
- Age at diagnosis: 45
Re: Young multiple myeloma mother from Australia
Hi Justine,
I am Australian as well, originally from Coffs Harbour, Northern NSW now living near Ballarat. This is a great website to reach out to other myeloma patients.
I want you to know that there is hope - so take a big deep breath. You are probably still in the shock stage at the moment. There is so much I want to say - where to start.
Australian terminology for myeloma is slightly different than the US - for insurance purposes myeloma is considered a terminal cancer. I have seen the doctors tick the box for unlikely to survive 12 months (don't despair) that was over 4 years ago. In the states it is deemed to be a treatable incurable disease - similar outcome but different terminology.
What help have you got? You will need help on this journey so dont let pride get in the way. Ask for help. Family, friends, parents of your 6 year old son (I assume he is at school) - can someone put together a food roster for you or if you don't need that something like cleaning the house. My children were 6 and 10 when I was diagnosed. We had a food roster that helped enormously.
We do have access to trials but it depends on where you are in the treatment. Are you seeing a myeloma specialist or haematologist or oncologist? Or all three. It is important to see a myeloma specialist.
Feel free to send me a PM if you have more questions.
All the best,
Libby
I am Australian as well, originally from Coffs Harbour, Northern NSW now living near Ballarat. This is a great website to reach out to other myeloma patients.
I want you to know that there is hope - so take a big deep breath. You are probably still in the shock stage at the moment. There is so much I want to say - where to start.
Australian terminology for myeloma is slightly different than the US - for insurance purposes myeloma is considered a terminal cancer. I have seen the doctors tick the box for unlikely to survive 12 months (don't despair) that was over 4 years ago. In the states it is deemed to be a treatable incurable disease - similar outcome but different terminology.
What help have you got? You will need help on this journey so dont let pride get in the way. Ask for help. Family, friends, parents of your 6 year old son (I assume he is at school) - can someone put together a food roster for you or if you don't need that something like cleaning the house. My children were 6 and 10 when I was diagnosed. We had a food roster that helped enormously.
We do have access to trials but it depends on where you are in the treatment. Are you seeing a myeloma specialist or haematologist or oncologist? Or all three. It is important to see a myeloma specialist.
Feel free to send me a PM if you have more questions.
All the best,
Libby
-
LibbyC - Name: LibbyC
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2009
- Age at diagnosis: 43
Re: Young multiple myeloma mother from Australia
Hi Justine,
I have never posted on this site before but have been constantly reading up all there is to know about this disease. When I read your post that you're from Australia, I thought I would respond.
I am from Brisbane myself. My dear father was diagnosed 25 years ago with multiple myeloma when there was no treatment only immunoglobulin. He was given 6 months to a year max to live. 10 years later, when the multiple myeloma started to really play up, he was referred to a doctor in Brisbane call Dr James Morten, He constantly travels to stay up to date with the multiple myeloma treatments and was a godsend for my father.
His protein levels were through the roof. Lesions, bone pain. The lot. The treatment, initially a stem cell transplant, gave Dad an extra 15 years of life, which gave him the opportunity to watch me grow and to meet his first grandchild, which was his life support.
Sadly, though, Dad past away in March this year, after 25yrs, when all treatments was exhausted, leaving a hole that will never be filled.
The purpose of this response is that you have a long future ahead of you as we have the some of the best medical doctors working on this disease. There are many anti cancer treatments available now.
Stay strong and positive.
Paul
I have never posted on this site before but have been constantly reading up all there is to know about this disease. When I read your post that you're from Australia, I thought I would respond.
I am from Brisbane myself. My dear father was diagnosed 25 years ago with multiple myeloma when there was no treatment only immunoglobulin. He was given 6 months to a year max to live. 10 years later, when the multiple myeloma started to really play up, he was referred to a doctor in Brisbane call Dr James Morten, He constantly travels to stay up to date with the multiple myeloma treatments and was a godsend for my father.
His protein levels were through the roof. Lesions, bone pain. The lot. The treatment, initially a stem cell transplant, gave Dad an extra 15 years of life, which gave him the opportunity to watch me grow and to meet his first grandchild, which was his life support.
Sadly, though, Dad past away in March this year, after 25yrs, when all treatments was exhausted, leaving a hole that will never be filled.
The purpose of this response is that you have a long future ahead of you as we have the some of the best medical doctors working on this disease. There are many anti cancer treatments available now.
Stay strong and positive.
Paul
Re: Young multiple myeloma mother from Australia
Thankyou so much for the message Paul. I'm seeking a second opinion at a hospital in Sydney as I'm not happy with the conflicting information I have been given on myself at current hospital. We are working towards transplant but my progress is slow getting the para-protein down in time ( 1 month to go)....I'm currently sitting on 32% after initial biopsy showed 52% in late July. I'm trying to stay positive but finding it very difficult when the medical staff say " we are not quite sure what to do with you". I appreciate any advice on how to navigate the Aussie medical system! My condolences for your father, what a fighter 
Sincerely, Justine
Sincerely, Justine
-
Justine - Name: Justine Ryder
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: August 2013
9 posts
• Page 1 of 1
Return to Member Introductions / Personal Stories