Chrissy,
Sorry for the opportunity to welcome you to this forum. I agree with both Brandyjoco and Multibilly (as always). While I also was eager to start treatment ASAP, I fortunately used the delay to seek treatment options. Talk about fortunate.
It was pure dumb luck I didn't rush into a treatment plan. You are probably going to get a crash course in myeloma, insurance, and treatment options. Depending upon your genetics( as Multibilly referenced), your age, whether you have CRAB involvement, and what resources you have available, you may desire to enroll in a clinical trial. I may be generalizing things too much, but many clinical trials require odd peculiarities, such as never having any prior chemo treatment to having several prior treatments and relapsing each time.
I wish it wasn't the case, but I have a friend who because her oncologist started her on Revlimid, Velcade, and dexamethasone (a specific and successful treatment option), she isn't illegible for some rather attractive clinical trials. She happens to be high risk. If we fully understood then what we know now, she could have more options available today. She still has options, just not as many.
Take this time to research your options. Ask around. Good luck, and I can't say this enough: "Seek the advice of a MYELOMA specialist".
Craig
Forums
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blueblood - Name: Craig
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: March 2014
- Age at diagnosis: 54
Re: Not diagnosed - unsure of meaning of lab results
Chrissy-
I know that multiple myeloma isn't a diagnosis that you wanted to get, but at least there is some direction to where to go in thinking of effective treatment.
One other thing that I want to mention is that if you are having your follow-up for the results of your most recent testing in 3 weeks, it may be another couple of weeks before treatment starts. Everything has to be approved by your insurance company first. When I started treatment, with a pathologic fracture of my left arm, I started dexamethasone and a Zometa infusion immediately, but it took 3 weeks for my insurance to approve Revlimid and then for it to be dispensed and mailed to me by the specialty pharmacy. I wasn't happy about this, but that's the way it goes.
Make sure that you have a myeloma specialist on your team since there are so many new options for treatment that many general oncologist don't know about.
All the best to you in starting this new journey. We are all here for you.
Nancy in Phila
I know that multiple myeloma isn't a diagnosis that you wanted to get, but at least there is some direction to where to go in thinking of effective treatment.
One other thing that I want to mention is that if you are having your follow-up for the results of your most recent testing in 3 weeks, it may be another couple of weeks before treatment starts. Everything has to be approved by your insurance company first. When I started treatment, with a pathologic fracture of my left arm, I started dexamethasone and a Zometa infusion immediately, but it took 3 weeks for my insurance to approve Revlimid and then for it to be dispensed and mailed to me by the specialty pharmacy. I wasn't happy about this, but that's the way it goes.
Make sure that you have a myeloma specialist on your team since there are so many new options for treatment that many general oncologist don't know about.
All the best to you in starting this new journey. We are all here for you.
Nancy in Phila
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
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