[Mattias]

New here

by Mattias on Mon Apr 18, 2011 1:08 pm

Hello!

I´m new here. I live in Sweden. In august 2009 during tennis practice I first recognised a tenderness in my left hip/femur. It was really no problem, just something that bothered me just a little. I thought it would pass with time. So wrong I was.. I continued playing tennis but the tenderness developed into severe pain. I tried to stretch after warming up, I tried antiinflammatory drugs but nothing seemed to relieve the pain. In November 2009 I had trouble just to walk. I went to my family doctor and had the diagnosis "runners knee", early december. A couple of days later i slipped on an icy parking lot and fractured my left femur just below the trochanter region. At the hospital they could see on my X-rays that I had some kind of pathological lesion and referred me to one of Swedens best centers in treating pathological bone fractures. I had to do several tests (blood, urine, fine needle puncture, CT, MRT, you name it!) It took them a while before they found out that I had a solitary plasmacytoma in my left femur. I went through surgery and had a titanium rod implanted and subsequently radiation therapy. I go to my local hematologist every third month for a check-up. All my bloodwork is fine except for the last two check-ups. I have an M-Spike varying between 4-5. My lower back is somewhat stiff but that can be secondary to my surgery. (Left leg is about 15mm shorter than my right). I hope to stay away from myeloma as long as possible. I feel a bit down because of my latest bloodtests but it feels good to read the stories here at the myeloma beacon. My father was diagnosed with myeloma feb 2009. He is fine for the moment.

[Boris Simkovich]

Re: New here

by Boris Simkovich on Wed Apr 20, 2011 9:29 am

Thank you for introducing yourself, Mattias. Like all of us here, I have mixed feelings when someone new posts their introduction. I'm glad to have someone else who can share their experiences and comment on the information and concerns others describe here, but I'm sorry that yet another person has to do battle with myeloma.

I hope you will check in regularly here and, when relevant, share your thoughts on issues that are raised, or tell us more about your own experiences.

I suspect that several people here might be interested to hear more about the treatment you've received so far and the rationale for the treatment -- that is, why you were told you should do what you've done.

Also, it would be interesting to hear what sort of treatment options your father is pursuing ... and, of course, what the doctors have said about the fact that your father has myeloma and you now have a solitary plasmacytoma. Are there environmental factors that could account for both of you having these conditions?

Again ... welcome!

[Mattias]

Re: New here

by Mattias on Thu Apr 21, 2011 4:12 am

Thank you for welcoming me Boris!

In Sweden we have national guidelines for teatment of myeloma, plasmacytomas and MGUS. The intention is that it should not matter where you live. You shall be able to receive the same treatment regardless if you live in urban areas like Stockholm, Gothenburg or Malmö compared to the vast north of our country. In my case I was diagnosed with solitary plasmacytoma at a University clinic. My controls take place at my local hospital. I live in the southeast of Sweden and have the abilty to choose between two University clinics for top expertise knowledge and treatment. My father went through induction treatment with dexamethasone and Velcade and subsequently auoto SCT. He was in VGPR for 15 months. His M-spike started to rise again and hes on Velcade and Dex again. He has responded well and feels fine. Both me and my father participate in a study where the scientists have collected our bone marrow and store it for future analysis. The only thing in the environment I can think of is chemical solvents/compounds, dental composites and mercury vapors. My father is a neurobiologist hence exposed to chemicals since he was 20 years old. Now he´s 61. I´m a dentist with a specialist degree i prosthetic dentistry. I was born in 1970 and had my DDS in 1996. Acrylic resins surrounds me daily but I protect myself accordig to the rules.

All my labresults are fine except for the M-spike. It´s fairly low. I would be diagnosed with MGUS if it wasn´t for my history of solitary plasmacytoma. X-rays are fine showing no pathology. The follow the CRAB. So far no treatment needed for me!

It gives great comfort sharing this and to be able to share other members stories.

Best regards Mattias

[Mattias]

Re: New here

by Mattias on Thu Apr 21, 2011 5:14 am

Excuse my bad spelling above. What I mean is that my Doctors monitor me accordning to possible CRAB findings. My treatment after diagnosis was surgery, left femur. Radiation daily over 5 weeks except for saturdays and sundays. In all I received a radiation dose equivalent of 50 Gray. No side-effects but loss of hair on my thigh and burned skin. If other findings than my M-spike occurs I will probably be diagnosed with myeloma. Now I´m in "no man´s land" . I just have to wait and see.......
// Mattias