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JaneMGUSuk
Regular
Joined: 22 Feb 2008
Posts: 14
Location: Milton Keynes Buckinghamshire England
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 Posted: Tue Feb 17, 2009 8:25 pm Post subject: MRI showed myeloma |
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Hi all,
Its been a long time since I posted on here but I thought I would give you all an update and also ask for some opinions.
[u]Backround[/u]
MGUS Diagnosed 2002 (aged 37)
Smoldering Multiple Myeloma diagnosed 2008
Recent Lab results
January 2008 last year bone marrow plasma 26%
November 2008 IGg 31.9 IGa 2.0 IGm 2.0
January 2009 Globulin 60, Kappa FLC 157 Lambda FLC 1.0 K/L Ratio 111
I had an MRI scan done 3 weeks ago due to back pain, this was due to be done in March as part of re-staging/monitoring but was brought forward due to pain. The findings were 2 herniated disks in C1 and C2 (cervical, top of spine) 1 slightly torn disk in the thorasic spine (middle) and 1 disc burning out in my lumbar (bottom) spine. The MRI scan also showed myeloma has infiltrated my bone marrow throughout the whole of my spine.
My specialist has said that treatment may be needed in 2-3 months, and due to the shock of the findings the only word I picked up after the MRI result was thalidomide treatment.
I obviously asked if this means I now have active myeloma, but she declined a straight answer and said if she had to stand up in court she could not say either way whether I was smoldering or active, I think the truth maybe being withheld until more information is known. A skeletal survey is being arranged and I may need another bone marrow biopsy.
Is myeloma visible on an MRI in a smoldering myeloma case?
Would my specialist talk of treatment if I was still smoldering?
I am not sure if it is just marrow or bone infiltration that was seen on MRI either way this is not a good sign is it?
Any views or comments would be greatly appreciated.
Best wishes to you all xxxx
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Best wishes From
Jane in the UK
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brainman
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Joined: 13 Oct 2005
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Location: Tennessee
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wendi
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Joined: 15 Feb 2009
Posts: 9
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| Posted: Wed Feb 18, 2009 11:13 pm Post subject: Hi |
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My mother has just started taking thalimide( sp) on teusday she has MM and 40% of the bone marrow is effected and her bone scan also showed the cancer, her doctor told us she was in stage 3 but .... not much else I believe that if the doctor keeps the conversation more clinical then you will remain more positive about your treatment. oh yeah the thalimide makes you very sleepy my mom says I will post her steps and if you get any information please let me know. You will be in my prayers
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JaneMGUSuk
Regular
Joined: 22 Feb 2008
Posts: 14
Location: Milton Keynes Buckinghamshire England
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| Posted: Fri Feb 20, 2009 2:46 pm Post subject: Appointment today |
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Hi all,
I had a skeletal survey done today, they didn't do my spine because they done the MRI scan 3 weeks ago and they said that that gives a more detailed picture so spine x-rays were not needed.
I spoke to my specialist today and she is almost certain that my smoldering myeloma has become active myeloma. I clarified the MRI scan results and it was infiltration of the bone marrow as opposed to the bones that was seen on the MRI scan. I asked about treatment and she wants to get x-ray results back and do a bone marrow biopsy first to stage me and then I will start chemotherapy if I am active. The treatment will be CTD, cyclophosphamide, Thalidomide and dexamethazone. I just thought I would update you all.
Best wishes
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Best wishes From
Jane in the UK
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wendi
New User
Joined: 15 Feb 2009
Posts: 9
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| Posted: Fri Feb 20, 2009 3:46 pm Post subject: to jane |
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why do the doctors wait for treatment if the diagnois is smoldering ,one would think that getting it in this stage would eradicate the cancer before it begins? Jane I will post all the information from my mother visits to help inform you.
She had her second treatment of chemo velcade, and some blood test to show her thalidomide and coomaden(sp) level she will have to take more coomaden to make sure the blood is more fluid. and because her second treatment she has a lower level of white count so here we go by the eleventh day we will need a mask and my youngest will not be able to visit in person so we are setting up a web cam for them to visit and we will also get her to visit outside the window when she is getting chemo.the biggest thing is she is so tired and out of breath it is hard for her to sit for any time so this is more than just tourcher for her 
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wendi |
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JaneMGUSuk
Regular
Joined: 22 Feb 2008
Posts: 14
Location: Milton Keynes Buckinghamshire England
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| Posted: Sat Feb 21, 2009 3:37 am Post subject: No treatment for smoldering myeloma |
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Hi Wendi,
In very rare cases smoldering myeloma is treated with Thalidomide, to attempt to bring paraprotein levels down. Smoldering myeloma is not usually treated until it becomes active full blown myeloma. Sometimes active myeloma is not treated at stage 1 if it is not causing symptoms. Only when symptoms begin, treatment will start. If treatment begins too soon there is a risk that chemotherapy could cause Leukemia, and the side effects of chemo would be unnecessary in a person who is without symptoms. It is a very strange disease in that treatment has to be given at just the right time or major problems can occur.
I am sorry to hear that you Mum has to spend time in isolation due to her low white cell counts, it must be hard for her and the family. It is bad enough being ill but it must be harder when you need family around and plenty of hugs and you are not allowed. Lets hope the white count goes up soon and you can all get together again very soon.
Thanks for the replies
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Best wishes From
Jane in the UK
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wendi
New User
Joined: 15 Feb 2009
Posts: 9
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| Posted: Sat Feb 21, 2009 1:18 pm Post subject: cancer |
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my mom had breast cancer 12 yrs ago and ever since she has had trouble getting her white blood cell count back to normal and has had anemia so ,this cancer has been a suprise a bad one she has 40% plasma cells effected and no sign of lesons on her bones, but had a compression fracture in her lower back she still gets up and is active as she can sometimes I think she over does it but , she feels that if she stops moving she will parish and the cancer will take her,so what ever makes her happy
is what makes us happy. she never had any signs until now she had a cancer check up in sept. of last year and nothing it was never diagnosed untill now not even smoldering .her compression fracture was in nov and now the dianoses is stage three MM it baffles me well thanks for listening/reading your new friend wendi
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