Thank you for your response yes I’m on Medicare been on it since 2012 because i also have Sarcoidosis and kidney failure haven’t been able to work In 14yrs i had a pet scan last year but i wasn’t informed of anything yes i had to get a second opinion this year my previous dr for 7yrs wasn’t updating me but the new dr i got a few weeks ago he’s the one sending me for all of these tests he says for further treatment

Yes, I have had many of these tests many times in the past 14 years.

Yes LadyT!
24 hour urine test
MRI’s
CAT scans
but what you may need is the very expensive PET scan!

A full body nuclear scan will determine if and where you have the cancer. In my case it was in the spine, hip, shoulder and even 4 spots on the liver!

I notice you are so young! Only 48 which is a good thing! You will be able to tolerate all of the tests and therapies that they will give you.

Since you are not on Medicare I’m hoping you have good medical insurance. To test that thesis tell your doctor you want a PET scan. If you hear “they won’t pay for that” you know you’re in for a battle.

But a PET scan reveals everything so it really should be given to all once a year. This country would be healthier.

I assume you work for a living. So get your thoughts together as far as going on SSDI the rest of your life. Depending on your occupation you may not be able to do that job.

Don’t panic. This is treatable. And there are many treatments! Your oncology team will put together a plan and they take care of almost everything, including expensive cancer drugs.

Look for your oncologist to recommend a cocktail of drugs to fight this. He/she should recommend:
Revlimid (Lenalidomide)
Decadron (dexamethasone)
Velcade (bortezomib)
Darzalex (Daratumumab)
Along with Vitamin D, Acyclovir, possibly Eliquis and a bone strengthening shot such as Xgeva.

Anything less than the above let us know. And ask your doctor why you are not getting the above. Ask with all due respect. They don’t like to be second guessed. There should be a good reason why or why not you are getting the specific therapy. Depending on your particular situation you may be getting different drugs because there are so many types of MM.

Don’t become overwhelmed! You will be bombarded with different terminology and it is very confusing. Let the group know what is going on and we can help!

We want you to get the finest care and the best drugs upfront without fail.

I have had 4 byopsy's, 3 PET Scans, and 3 24 hour urine tests in 17 months