Hello. My mom, 61, has been diagnosed with multiple myeloma following acute renal failure. She's had 2 oncology appts since being released from hospital 10 days ago. Bone marrow shows 70-80%, she has dialysis 3x wk, has no insurance. Dr told her today it is very aggressive, that she needs treatment asap. She can't begin multiple myeloma treatment until Medicaid/Medicare begins, which could take another 2 mos?! I'm worried, sad, frustrated.
My parents have been divorced for 20 years and she hasn't remarried, so I am her support. My 38 year old sister with Down's syndrome lives with mom.
I'll be lurking about the forum, trying to learn as much as I can. My prayers are with you all, and I ask the same.
Tina
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8 posts
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MrsFisher - Name: Tina
- Who do you know with myeloma?: Mother
- When were you/they diagnosed?: Oct 2013
- Age at diagnosis: 61
Re: Newly diagnosed
I am so sorry to hear about your mother's diagnosis. Check out this link and see if it can be of any help.
http://www.lls.org/#/diseaseinformation/getinformationsupport/financialmatters/copayassistance/
http://www.lls.org/#/diseaseinformation/getinformationsupport/financialmatters/copayassistance/
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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: Newly diagnosed
Dear Tina,
Where in the world are you located? This is such a confronting situation for all of you so if you can access help for you &your sister that will put your mothers mind at rest somewhat I hope. What has helped me is community services & taking charge of my pathology results. The information provided on this site has been invaluable& given me confidence to ask the "hard " questions at my consult today. I have 3 very young children on my own who will be left orphaned if I don't seek out the right care for myself. It's often frustrating & heartbreaking. All I can say is get copies of all your mothers labs every week & seek a second opinion when you can. There are many lovely, helpful people on this site, befriend them. Good luck, here for you in Australia
Sincerely, Justine
Where in the world are you located? This is such a confronting situation for all of you so if you can access help for you &your sister that will put your mothers mind at rest somewhat I hope. What has helped me is community services & taking charge of my pathology results. The information provided on this site has been invaluable& given me confidence to ask the "hard " questions at my consult today. I have 3 very young children on my own who will be left orphaned if I don't seek out the right care for myself. It's often frustrating & heartbreaking. All I can say is get copies of all your mothers labs every week & seek a second opinion when you can. There are many lovely, helpful people on this site, befriend them. Good luck, here for you in Australia
Sincerely, Justine
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Justine - Name: Justine Ryder
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: August 2013
Re: Newly diagnosed
Thank you all for your replies. We just learned that the co that makes Velcade will be providing it for her for now. God answers prayer.
Justine, my heart goes out to you. I have three children of my own. What are their ages?
My father said he will help out with my sister. I've told her that mom is sick, but haven't tried to explain much more to her because I didn't think she would understand. Today mom told me that my sis overheard her discussing her cancer with a neighbor and my sis said, "uh uh.. No cancer. Not my mom."
One day at a time. That's the advice we're constantly receiving, and it's become our motto.
Blessings,
T
Justine, my heart goes out to you. I have three children of my own. What are their ages?
My father said he will help out with my sister. I've told her that mom is sick, but haven't tried to explain much more to her because I didn't think she would understand. Today mom told me that my sis overheard her discussing her cancer with a neighbor and my sis said, "uh uh.. No cancer. Not my mom."
One day at a time. That's the advice we're constantly receiving, and it's become our motto.
Blessings,
T
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MrsFisher - Name: Tina
- Who do you know with myeloma?: Mother
- When were you/they diagnosed?: Oct 2013
- Age at diagnosis: 61
Re: Newly diagnosed
Justine, we are in the US: Florida.
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MrsFisher - Name: Tina
- Who do you know with myeloma?: Mother
- When were you/they diagnosed?: Oct 2013
- Age at diagnosis: 61
Re: Newly diagnosed
Tina,
If you haven't already discovered them, there are two parts of the Beacon site that may be useful to you as you start learning more about multiple myeloma.
The first is the Links section, which has directories of links to information sources about myeloma, drug reimbursement programs, and much more:
https://myelomabeacon.org/links/
The second is the Beacon's Resources section, where there are a variety of articles covering a range of topics that are likely to be helpful to patients and family members learning more about the multiple myeloma:
https://myelomabeacon.org/resources/
(The Resources section can be a bit overwhelming at first, but take some time to look through it and you'll be bound to find materials that will be useful.)
Good luck!
If you haven't already discovered them, there are two parts of the Beacon site that may be useful to you as you start learning more about multiple myeloma.
The first is the Links section, which has directories of links to information sources about myeloma, drug reimbursement programs, and much more:
https://myelomabeacon.org/links/
The second is the Beacon's Resources section, where there are a variety of articles covering a range of topics that are likely to be helpful to patients and family members learning more about the multiple myeloma:
https://myelomabeacon.org/resources/
(The Resources section can be a bit overwhelming at first, but take some time to look through it and you'll be bound to find materials that will be useful.)
Good luck!
Re: Newly diagnosed
Hi Tina,
My children are 9 months, 23 months & 7 years...no partner. I was diagnosed with active stage 3 multiple myeloma in early August this year 52% cancer para-protein, having chemo & hoping to get transplant soon but my progress is slow. My biggest worry is what will happen to my kids? I wish you all the best & stay in touch xx
My children are 9 months, 23 months & 7 years...no partner. I was diagnosed with active stage 3 multiple myeloma in early August this year 52% cancer para-protein, having chemo & hoping to get transplant soon but my progress is slow. My biggest worry is what will happen to my kids? I wish you all the best & stay in touch xx
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Justine - Name: Justine Ryder
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: August 2013
Re: Newly diagnosed
Justine and Tina --
My heart goes out to you both. I will be praying for you both.
Dana
My heart goes out to you both. I will be praying for you both.
Dana
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darnold - Name: Dana Arnold
- Who do you know with myeloma?: self
- When were you/they diagnosed?: May 2009
- Age at diagnosis: 52
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