When A Patient Is On "standard Care", What Are The Chances That New Drugs/treatments Are Available? Only Certain Medications Are Allowed. | MyMyelomaTeam

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When A Patient Is On "standard Care", What Are The Chances That New Drugs/treatments Are Available? Only Certain Medications Are Allowed.
A MyMyelomaTeam Member asked a question 💭
posted February 9
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7 Ways To Avoid Stopping Treatment for Multiple Myeloma Read Article...
A MyMyelomaTeam Member

I daresay standard care is more or less the protocol that is followed at the beginning of treatment. That treatment is followed as long as it's working. When it quits working, the next step is followed. I say "the next step". My doctor indicated that it is not a rigid thing. There is some variability.
My case is unusual in that my first stage of maintenance treatment stayed effective for seven years! But when it began losing effectiveness early last year, the standard next step was followed, and it's working well.
I hope that sheds a little light on things.

posted February 9
A MyMyelomaTeam Member

I'm not on any treatment at this time. But I have checked enough to know that if I do need treatment again, I have told my doctor that I would need the treatment to be an injection type of treatment. That would be the only way I could afford it because it would mean having to go into outpatient to get the treatment. If I am correct, that will fall under part B of Medicare...at least I hope I have read that correctly about how part B works.

posted February 10
A MyMyelomaTeam Member

Kathryn thats so sad when the insurance company doesn’t want to pay your medical bills but they sure don’t have a problem taking your payment. What does standard care mean. Yes DGBurke is correct they use one drug combination until it quits working then come up with a different combination.

posted February 9 (edited)
A MyMyelomaTeam Member

Kathryn that’s what those government programs are for people that aren’t rich and don’t have enough income or insurance to cover their medical expenses so don’t feel guilty about having to access them. That’s why I don’t understand why the American people don’t want Universal healthcare like Canada has and I realize that I pay extra taxes to pay for our UNIVERSAL HEALTHCARE but I would rather do that than have to constantly worry about how I am going to pay my medical expenses and go thousands and thousands of dollars in debt because I can’t afford enough healthcare insurance.

posted February 12
A MyMyelomaTeam Member

It all comes down to your insurance coverage. I’ve been very lucky. I have Medicare A&B and BC:BS for drugs. I’m on Simplicity, Revlimid, and Velcade. I’ve been on other drugs during my 3 1/2 years with MM. I’ve been in remission the last 3rd but my MSpike is going up and my Dr wants to change my drugs to Darzalex & Polymist. I’m not looking forward to the change because after 3 1/2 years I finally have some quality of life. I know what to eat and not to eat. That was a big experiment. But getting back to insurance, if I didn’t have the coverage that I have, I wouldn’t be here right now. I don’t pay a dime for my treatments. Looking at my quarterly Medicare statements, I think after 3 1/2 years I’m in for a $5 million medical bill. I take 14 pills of Revlimid a month and I think that’s like $26,000 just for Revlimid. My infusion and Velcade which Velcade is twice a month but the infusion is once a month that’s about 50,000 a month. So I’m very thankful. I’m not sacrificing everything I worked for all my life to spend it on medical bills. That’s when I go meet my maker. I am not leaving. My wife broke just because I’m sick so that’s the way I am. If I don’t have quality of life there is no life. I can finally taste food. I know what I can eat what I can’t eat. I still have some bad days, but they’ve mostly been good.

posted February 10

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