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Bone Cancer Community
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Avatar universal

List MM symptoms on All forums.

Three months ago I listed questions regarding that I felt bone depressions on top of my skull near my hairline.  With a large puffy mass.  I also stated that I did not have insurance and did not know what to do.  It never occurred to my that I had Myeloma.  After getting Medi- Cal coverage I struggled for 3 weeks to get Doctors to see me.  I went to a clinic and I had blood tests.  Then more blood tests and 24 hour urine test as I was anemic, and stage 4 kidney disease.  I am 56 years old and have been healthy all my life.  Now I'am told that I have MM.   Word needs to get out to everyone that what a bone lesion is.  I tried to tell people for three months that I could feel a depression in my skull.  I was poo pooed all the way,  Even in brief conversations to doctors about my lump on my head.  I told them I could feel a depression on the skull.  All I got was no its just a lipoid tumor, benign there is no lesion.  I have to live for my daughter's sake.  Prognosis is poor, any cancer treatment trials?
2 Responses
Avatar universal
Based on our experience with my Mom, you need to contact the University of Arkansas Medical Sciences Center.  Dr. Bart Barlogie is a world recognized leader in MM and my Mom has been seeing him since I believe 2003.  She is completely symptom and cancer free at this point, and believes it's all due to Dr. Barlogie.  He has just stepped down from his full time role there, but is still involved and their program is the best there is from what we could find.
Avatar universal
Don't give up hope.  Myeloma is a rare cancer so many of us with it have gone through delayed diagnosis and other problems finding a doctor to figure it out.

I was very sick when I finally got diagnosed after several years doctor to doctor.  I am now 5 years out from treatment and doing fine, though I know there is more treatment in my future (numbers starting to go up).

I agree you need to seek out a specialist in myeloma.  There are many new treatments available.  Though we are still waiting for a cure, your disease can be treated and you can keep living your life.

most of what you read on the internet is out dated.  I am not allowed to post webistes but their is a good support site for myeloma called the beacon if you can search that in your search engine.

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