One patient with glioblastoma still alive nine years later
by kobrav on Tue Mar 01, 2011 04:27 PM
they found an m spike of .5 and referred to hematologist- re-did the test .4 IgG- everything else normal-calcium ,creatine, light chain ratio etc-no bence jones in urine-also did skeletal survey-came back as suspicious but inconclusive-several ill defined lucent/lytic foci in skull-dr said coiuld just be some cysts or blood vessels -just could not tell-rest of skeletal looked fine-now awaiting to do a bone marrow next week- any suggestions or similiar instances-really nervous an anxiuos-40 year old- no symptoms pains etc.
by summerluvr on Tue Mar 01, 2011 05:26 PM
If it's any consolation, I have known MM and had chemo and stem cell transplant last year and now am in remission but get my blood work every month, and my doctor has said she would not consider treatment again unless my M-spike goes up to 10 g/l or over. I'm in canada so if you are in the US that would = 1. When I was diagnosed my M-Spike was 94 g/l (so 9.4).
Hope that is not too confusing!
Good luck on your bone marrow test, I will admit it is pain ful, but over fairly quickly and then you just have a bruised type pain for a few weeks. they did mine on the back of my pelvis. I had a local but nothing else and I had it in the hospital by a new resident doctor, so I'm sure experienced docs can do it quicker. I've had worse procedures ;) this was not a big deal for me!
You should ask for an MRI. I had spots show up on MRIthat were not clear on Xray. I had a CT scan for other reasons (blood clot) and it showed the lesions really well as other findings.
There are some poster who have a condition of an M-spike but no cancer and it is call MGUS.
by kobrav on Tue Mar 01, 2011 05:52 PM
Thank you for taking the time to respond-I do hope that you stay below the level- I am going to see what the bone marrow shows and then get the mri or ct if needed-this is all so new-im researching and trying to understand-the m spike is obviously some sort of warning from my body-i have read about the mgus -and also smoldering mm though that is somewhat confusing and different doctors say different things-i looked at the staging systems too-im not using anasteshia but just a local for the test-would have been an 8 week wait otherwise-
by K_C_1 on Tue Mar 01, 2011 11:49 PM
Good Evening Kobray;
Many of your questions/concerns can be answered by looking through the archives here. Sit down and read. You have much to get caught up on!
Really nervous and anxious.
Understandable! But you've arrived at the right place to help calm those fears be educating yourself. Get informed! Education is what will save us!
by kobrav on Mon Apr 04, 2011 04:05 PM
Got my results back from bmb- showed exactly 10 percent-all of my other tests looked good and all levels within the norm including B2M and LDH- doc said since all of the CRAB symptoms were normal and that the bmb could be off a few percentages he was going to call it mgus still for now and see me for repeat tests in three months- my m spike was still at .4 and no bence jones proteins were present
by UTboy1 on Mon Apr 04, 2011 05:41 PM
Congrats on what appears to be good news. However, I STRONGLY recommend you push for an MRI. Lab work is not enough to rule out Myeloma. It's possible to have bone lesions forming while at the same time showing little to nothing in your labs.
Case-in-point, I had <5% plasma cells with bone marrow biop; 1.6 Bm2; 4.9 Alb, normal LDH, and normal blood cell count. I had zero M-spike. However, I had three broken ribs and over 100 lytic lesions.
I wouldn't go on assumptions. Get the full workup...which includes MRI.
by kobrav on Mon Apr 04, 2011 06:18 PM
That has been going through my mind too- i will take that advice just for peace of mind-would rather catch it early as possible and get the MRI done-
by UTboy1 on Mon Apr 04, 2011 09:04 PM
kev, I know there are others on this board who have seen bone involvement without detection in lab work. I can't stress imaging enough. The sad thing is, insurance companies aren't real receptive to tracking/monitoring MM progression with MRI or PET/CT. However, in your case, they should support an MRI for diagnoses.
Best of luck
by artsyamerican on Mon Apr 04, 2011 09:54 PM
Hi - you have gotten advice from -two of the most wonderful and knowledgeable folks on this board. However, my advice as an alarmist - by nature is be proactive and not complacent. Are you seeing a MM specialist? 10% plasma cells in your bone marrow - plus - suspicious lesions...hmmm...doesn't sound good. DO get an MRI to be on the safe side. Forewarned is forearmed!
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