Multiple Myeloma and Plasmacytoma

Is there anyone out there who has experienced this as a young adult? Looking to connect with other survivors :-)

I've been through radiosurgery and chemotherapy including thalidomide, and currently undergoing a regimen of Zometa due to bone lesions. Mets to brain and bones.

Hope all is well!

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  • I've had extramedullary plasmacytoma in my maxillary sinus 3 years ago (i wasn 19 that time) I was supposed to be cancer free until last december I got a terrible headache that wouldn't go away, when my neuro surgeon reviewed my post-op CT scan 3 years ago he pointed a very small tumor the size of a human hair that the doctors missed during my first surgery located on top of my nose bridge. It then grew and made an intracranial extension.
  • lilmamalilmama Community Member
    Hey ;-) My dads just been diagnosed with plasmacytoma in the maxillary sinus. I've never heard of it, and struggling to find anyone anywhere that also has it. Just wanted to share experiences and stories - maybe find and give support. Dads 65, it sounds a lot older than you guys I know, but he was still playing soccer every week until 6 weeks ago - so a very young 65 ;-). The tumor on his face has grown so fast, it's left us all speechless. He's been given thalidomide today, and will start chemo next week for 4 weeks, then radio. I've got a baby, and it's been tough trying to stay strong and brave - keep changing nappies, making dinner and looking after my boy - when some days all I've wanted to do is cry or be with my dad. My dads as stubborn as a mule, he is determind to get through this, and play soccer again asap! I just wonder what has caused this plasmacytoma. Dads doctors asked whether he had ever been in contact with workplace chemicals, or radiation in his job. He is an engineer, so I guess its possible. But you lads are way to young for that. What did they tell you? Sending you both a hug, lots of positivity and a bit of sunshine ;-) (its been a very rare sunny day here in the UK ;-) ;-) xx
  • Ldr12Ldr12 Community Member
    Sorry it took so long to respond. I'm just starting back at work so haven't been around much, too tired!

    Rory - what are they doing for you now? Did they go back in? That's so crazy! But that small I can see them missing, especially when they don't think anything's wrong with you ;-) I hope things have calmed down for you. Have you had any treatment other than surgery? Hugs!

    lilmama - I'm sorry about your dad! That's crazy that it grew so fast. Some people it does, some it doesn't. It doesn't discriminate! As for what caused it, that could be the reason. Mine is likely as a result from the radiation I received when I was 17...I had a first primary diagnosis of brainstem glioma and had to have radiation and chemo for that too. 10 years later, the hammer came down about MM. I'm one of the rare few still here with an MM diagnosis, trying to keep it that way. So in my case, it's probably a little more than coincidental that I was diagnosed with it. But I don't think that is always the case, so it's possible that it could have just happened and not been a result of anything :-) Big hugs to you and I hope the stubborn mule can fight through it ;-)
  • LDR12

    I didn't have surgery this time because of the tumor is too close to my nose and it could be really bad if they do surgery. I had Radiation to my forehead though.
  • Hi there!

    I was officially diagnosed in July of 2010 but had symptoms as early as January 2010 just two months before my 34th birthday...How are you?
  • Right now I'm actually holding okay. Possibly close to a relapse but hoping to stop that. Still taking Zometa for my bones and stuff. How are you??

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