Multiple Myeloma cancer- anyone know @ this? financial aid?

[Crystal0608]

May have TMI in some parts... I've researched online, but maybe someone know has experienced it with a relative can help me because until 2 days ago I'd never heard of it. My grandma (dad's mom) was diagnosed with it. Background: she is almost 70, had polio and didn't walk until 8, had 4 children starting at 15 (one died 12 yrs ago), raised 2 grandkids also, worked in a factory until she had back surgery over 10 years ago and has hurt since. Her dh of 50 years passed away last March and he had an unknown declining life ins policy, thought he had 10,000, actually it was 1,300 so bank account was wiped out for his funeral. She usually has enough for two months bills in her account, no other funds. I handle her financials. She does own her house/property with a 37,000 mortgage where my pawpaw had refinanced a few years ago and 3 vehicles-a Neon, a handicap van that doesn't work, and a handicap van that was my paw paws that I haven't been able to sell.

She'd been bleeding like a period but black blood for two years and also her legs regularly swell twice their side and she fractures a lot of bones and falls. I went to her regular doctor to one visit and they sucked, just kept sending her for colonoscopies and giving her iron pills, couldn't figure it out. I changed her dr to one my mama's relatives go to and the new one is awesome. He had tests ran at the hospital and sent her to an oncologist. She found out a couple months ago she has COPD and two days ago she has Multiple Myeloma, which is a cancer of the plasma and bone marrow from what I understand. All the symptoms were there: bleeding, unexplained fractures, anemia, back/bone pain. She gets a plate in her chest Monday and four days after that she starts a "new chemo". She won't lose her hair, she would her teeth (yay for false!). She will get the meds through her chest plate 2 times a week, then off a week for a total of 8 treatments. The doctor said if it goes well, she can live 10 more years.

My other grandpa had esphogerial cancer & died two years ago and my other grandma had stomach cancer & died at age 43, so I know about that chemo. This one is called "new chemo" and is outpatient. Does anyone know what a person goes through with it, side effects (the papers list tons, but like the medication warnings they list every possible one), and what she can eat during on and off weeks that won't make her sick. She drinks coffee and Coke and I read caffeine was bad. Also, any tips on foundations that she can apply for financial assistance? She has medicare that covers 80%, but the 20% is going to still be a small fortune. Any tips would be appreciated. Thanks,

 

[MickeysMommy]

My Dad was diagnosed in 2003 with Multiple Myeloma and was on Thalidomide for over 3 years - it's a pill. He went in once a month for an "infusion" but didn't have regular chemo. I am not sure what this chemo is that your grandma will be taking but I want to caution you to stay away from the internet to get your information. It can be both a blessing and a curse.

My Dad's MM was centered in his back. All his vertebre became fractured and his spine basically collapsed. That being said, everyone is different and reacts differently to their meds.

I don't know of any fianancial aid out there but someone else might. Go to the IMF (International Myeloma Foundation) website - there might be a ton of info on there for you.

Good Luck. I'll keep your Grandma in my prayers

 

[Crystal0608]

My Dad was diagnosed in 2003 with Multiple Myeloma and was on Thalidomide for over 3 years - it's a pill. He went in once a month for an "infusion" but didn't have regular chemo. I am not sure what this chemo is that your grandma will be taking but I want to caution you to stay away from the internet to get your information. It can be both a blessing and a curse.

My Dad's MM was centered in his back. All his vertebre became fractured and his spine basically collapsed. That being said, everyone is different and reacts differently to their meds.

I don't know of any fianancial aid out there but someone else might. Go to the IMF (International Myeloma Foundation) website - there might be a ton of info on there for you.

Good Luck. I'll keep your Grandma in my prayers

Thank you for sharing your story. My aunt was at the visit when she was diagnosed, so I don't know what stage or where it is at. I'll be at the next visit to find out more details. Some of the stuff I have read online has scared the heck out of me I know. She has a lot of back issues and walks hunched over, but that's gotten worse since her back surgery. She keeps getting fractures on her ribs- two right now. The last time I brought her in for fractures in her upper chest area, they said there isn't anything they could do to make it feel better. I'm very sorry for your father. Thank you for recommending IMF, I will check that out.

 

[MickeysMommy]

Please know that my Dad was in a lot of pain in the beginning and had to walk with a cane. His dr who was wonderful told him he'd get him walking without the cane and no pain. He did, although he had to be on oxycontin, he had no pain.

 

[ccgirl]

Hi there. I just want to give you . It sounds like you have really been through a lot in your life. Is she seeking treatment at a hospital or cancer center? I worked at a hospital in the finance Dept. They have financial counselor's that can really help with the financial part of things. They can tell you what else is available for the 20% and will also tell you if any portion can be written off. They would be a great resource. Good luck and stay strong!

 

[MsDisney23]

I lost my mother-inlaw to MM

 

[Tuffcookie]

I lost my Mom to MM. She was diagnosed in 2000, passed away in 2006.

She started chemo and her heart couldn't take it. She ended up with a pace maker.

Cleveland Clinic has a wonderful cancer center. It is important to find out what stage your grandmother is in.

to you & your family.

TC

 

[Pea-n-Me]

It sounds like a Social Worker would be beneficial to help sort through things and arrange for services she qualifies for, etc. She could probably hook up with one through the oncologist's office or the hospital she goes to for treatment. Best wishes.

 

[Crystal0608]

Hi there. I just want to give you . It sounds like you have really been through a lot in your life. Is she seeking treatment at a hospital or cancer center? I worked at a hospital in the finance Dept. They have financial counselor's that can really help with the financial part of things. They can tell you what else is available for the 20% and will also tell you if any portion can be written off. They would be a great resource. Good luck and stay strong!

Yes, all her chemo treatments will be at a Cancer Center, it is connected to the hospital. Thanks, I'll check with them.

I lost my mother-inlaw to MM

I'm sorry

I lost my Mom to MM. She was diagnosed in 2000, passed away in 2006.

She started chemo and her heart couldn't take it. She ended up with a pace maker.

Cleveland Clinic has a wonderful cancer center. It is important to find out what stage your grandmother is in.

to you & your family.

TC

I'm sorry for your loss too. My grandma has high blood pressure, but I think her heart is fine. Hoping so. I asked my cousin if they asked as the visit @ the stage, but they didn't.

It sounds like a Social Worker would be beneficial to help sort through things and arrange for services she qualifies for, etc. She could probably hook up with one through the oncologist's office or the hospital she goes to for treatment. Best wishes.

Thanks Pea-n-Me. I know it's hard to get assistance in NC if you own property, but I'm going to have her apply anyways.

 

[cntrygal]

She should be eligable for medicaid, which is different from medicare, go to your local dept of social services to apply

 

[Crystal0608]

She should be eligable for medicaid, which is different from medicare, go to your local dept of social services to apply

I called them yesterday and she can own one home & one car and up to $2,000 in cash/bank. I didn't even think she would be eligible since she owns something, so thanks for suggesting that. Based on the ss# she gets, she would have a 6,800 deductible per 6 months, which would still be great since I know the bills will be more than that after medicare. The other vehicles that were my grandpa's have to be sold before applying. Me and my dh spent 3 1/2 hrs last night detailing and washing them after I put them back on craigslist for prices I think are reasonable. I'm giving it one week or I take them to carmax. The handicap van is tall and fiberglass topped, so scrubbing that was no fun, though I found a brillo pad and dawn does wonders.

 

[ccgirl]

Hoping everything is working out.

 

[dis75ney]

I am a secondary assistance specialist for my company and assist patients who can't afford their medications. Try Chronic Disease Fund (877) 968-7233. I can't guarantee that they'll have funding available for the drugs your mother would be receiving, but that's the program I refer most patients to if they need assistance...

 

[Crystal0608]

Hoping everything is working out.

Thanks, she has her surgery consultation and an oncologist appt tomorrow and its my turn to go so I'll find out more then.

I am a secondary assistance specialist for my company and assist patients who can't afford their medications. Try Chronic Disease Fund (877) 968-7233. I can't guarantee that they'll have funding available for the drugs your mother would be receiving, but that's the program I refer most patients to if they need assistance...

Thank you! I'll have to check that out!

 

[Crystal0608]

Brief update: We had 3 dr visits yesterday. My gma is having her port put in this week, then chemo starts next week twice a week for two weeks straight, off a week, then repeat. They are treating it aggressively b/c it is stage 3 symptomatic (only 3 stages, but she isn't at the worst part). If she didn't have it done, she'd have less than a year. By having it done, if successful she'll start to feel better in 3 months. She had protein in her blood 6 years ago and we were told that it may have been mgus, a predecessor to MM, but only 1 of 100 people with mgus get MM. The plasma in her bone marrow was 16%. She was in very good spirits yesterday. I'd planned on taking her to the beach in Oct for her bday which is her favorite place, dr thinks its a very good goal for her. Wish us luck!

 

[ccgirl]

Brief update: We had 3 dr visits yesterday. My gma is having her port put in this week, then chemo starts next week twice a week for two weeks straight, off a week, then repeat. They are treating it aggressively b/c it is stage 3 symptomatic (only 3 stages, but she isn't at the worst part). If she didn't have it done, she'd have less than a year. By having it done, if successful she'll start to feel better in 3 months. She had protein in her blood 6 years ago and we were told that it may have been mgus, a predecessor to MM, but only 1 of 100 people with mgus get MM. The plasma in her bone marrow was 16%. She was in very good spirits yesterday. I'd planned on taking her to the beach in Oct for her bday which is her favorite place, dr thinks its a very good goal for her. Wish us luck!

Wishing you lots of luck. PLease keep us posted if you have time.