Hi,
about 3 weeks ago, our world changed completely... my husband who is 45 was diagnosed with myeloma. To make this week more stressful his 72 year old mother suffered kidney failure and was also diagnosed with myeloma!! I have never experienced the anxiety that I have coming to terms with 2 people I love facing such news and uncertainty. It is less than 6 months since we farewelled my husbands father so it has been overwhelming to say the least!
On a positive note - my husbands prognosis is better than we expected, he is in stage 1 with 3 lesions, 2 on ribs and one on his spine, there is slight abnormality in his liver tests but his calcium and renal function were normal. He will be starting treatment within the week - Dexamethasone and Velcade. It is still hard to believe he is "sick" he seems normal apart from the bone pain in the ribs and he has slept more the past year or so and had a couple of flu's which is highly unusual for him. We will be facing the decision of bone marrow transplant later this year but were asked to consider this (and research) before committing to it.
I am hoping that being part of a forum I will learn more and maybe have some input in the decision making process, I have learnt already that we are not expected to take just our specialists advice, he suggested we research and ask for more than one opinion, something that seems to be discouraged with other general health issues!!
My initial reaction was "OH MY GOD! bone marrow cancer.... no hope" but since reading some more I realise that there are some survivors and some people go on to live many years with fulfilling lives.. I am hoping to get more hope and keep a positive outlook.
So here I am...
Forums
6 posts
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Ulrika - Name: Ulrika
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: 3/2012
- Age at diagnosis: 45
Re: New to the whole Myeloma world...
I live in Australia / Tasmania so I can see a lot difference as we have a public hospital system which means we don't need to have health insurance to pay for treatment costs... although I imagine there will be some costs involved with drugs etc.
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Ulrika - Name: Ulrika
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: 3/2012
- Age at diagnosis: 45
Re: New to the whole Myeloma world...
Hi Ulrika, I am sorry to hear that two family
members have myeloma. That is indeed bad luck! I think that your doctor sounds to be open minded and hoping that you will also reasearch the issues. I think that there are myeloma specialists in AU too, to refer to.
I just wanted to mention that I also had a Velcade/Dex induction chemotherapy and it worked very well for me. Also do live in a country with universal health care (Canada), and have had very good treatment here. We don't have some of the most recently approved drugs for myeloma here yet, but I hope that soon we will. I have found the Beacon to be really helpful in trying to understand more about this complex disease and its treatments. Wishing you all the best!
members have myeloma. That is indeed bad luck! I think that your doctor sounds to be open minded and hoping that you will also reasearch the issues. I think that there are myeloma specialists in AU too, to refer to.
I just wanted to mention that I also had a Velcade/Dex induction chemotherapy and it worked very well for me. Also do live in a country with universal health care (Canada), and have had very good treatment here. We don't have some of the most recently approved drugs for myeloma here yet, but I hope that soon we will. I have found the Beacon to be really helpful in trying to understand more about this complex disease and its treatments. Wishing you all the best!
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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: New to the whole Myeloma world...
Hi Ulrika! I'm so sorry to hear that you are dealing with two diagnosis of multiple myeloma. If you were were like I was, you had never heard of multiple myeloma before. Hang in there. There will be good days, not so good days, and days that you want to dive under the covers and stay there. More than anything else, the Beacon has helped me to remember that I am not the only one in this boat.
Praying with you for a cure!
Marie
Praying with you for a cure!
Marie
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Marie64 - Name: Marie
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: 2010
- Age at diagnosis: 45
Re: New to the whole Myeloma world...
Hi Ulrika,
Sorry to hear about your familys dx. I live near Ballarat, Victoria and have been treated successfully in Melbourne. I have undergone an auto transplant and an allo transplant and am currently in remission (my myeloma was chemorefractory). If you would like more specific information (particularly with regards to Australian treatments) send me a personal message and I will get back to you. If you want someone to talk to let me know and I can give you my phone number.
All the best,
Libby
Sorry to hear about your familys dx. I live near Ballarat, Victoria and have been treated successfully in Melbourne. I have undergone an auto transplant and an allo transplant and am currently in remission (my myeloma was chemorefractory). If you would like more specific information (particularly with regards to Australian treatments) send me a personal message and I will get back to you. If you want someone to talk to let me know and I can give you my phone number.
All the best,
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
Re: New to the whole Myeloma world...
Thank you for the replies.... I already feel so welcome and it does help so much to know that someone who understands hears me!! 
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Ulrika - Name: Ulrika
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: 3/2012
- Age at diagnosis: 45
6 posts
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