[dreaming4adayy]

1st week of Diagnosis ~ find out ONLY after seeing on bill

by dreaming4adayy on Sun May 27, 2012 10:20 pm

Only in 1st week of Diagnosis.

My husband, 47 yrs old, showed up for his follow up after BMB and somehow gets all the way back to work without knowing he had been diagnosed with Multiple Myeloma. Oncologist told him he tested in the bad 1% and someone would be in and talk to him about clinical trials, and he could ask them questions. Then my husband said 30 min went by, a tech came in, told him "they" had all left, then gave him his next appointment (4 months) and his bill? He was sent packing! Later at work he notices on bill on the diagnosis line that the typed MMUS was marked out and Multiple Myeloma was hand wrote in by the Oncologist.

I still can't believe how this went down?? This past Friday I was able to get the 6 Page BM Biopsy Report from our regular Doctor. I have researched line for line all weekend, day and nite, looking up definitions, etc., but I seem to be more confused than when I started? For Example.... Multiple Myeloma isn't listed as the diagnosis on Biopsy Report. Is that normal? Or am I smack in the middle of the twilight zone?

Just to fill in the rest of my story.... my husband had/has no symptoms other than mild Enemia. No pain at all, ever. He has had some sort of low iron for most of his life. His bone scans came back with no damage seen, to date kidneys are unaffected. M Protein was the reason his regular Dr sent him to Oncologist. She tested it in 11/2011 and it was 8.4, and again in 3/2012, it was 7.9

I have sooooooo many questions...we weren't told what the outcome of biopsy might be... and knew nothing about multiple myeloma, so this is a long road to go... I have scanned in biopsy report and removed name, SSN, and other related info... Is there somewhere I could have it looked at for opinions, etc., to help me out of this fog? Not a doctor, I would would prefer a peer group such as here on this forum. Please don't yell at me if that's the dumbest thing you've ever heard... As most of you understand I feel as if my world and the person I Love the most is being ripped from my heart..

[Alan]

Re: 1st week of Diagnosis ~ find out ONLY after seeing on bi

by Alan on Mon May 28, 2012 4:04 am

Hi, I was diagnosed here in Australia last year when a tumour came on the scene near my sternum. I fell,out of,the hospital bed when they told me it was multiple myeloma, I hadnt heard of it and just the word "cancer" made the world shrink. Signed on for a trial and am still on Revlimid and zometa, prednisolone and a handful of other stuff. They took some stem cells to harvest my bone marrow if I ever need it, I have been on leave from work for,7 months and get aches and pains without too many big issues.
My numbers are low I simply rock along to the guiding hospital,once a month, listen, ask a few questions and then home to roll on with a few home projects. As a 53 year old, my wife is my rock and she keeps,the whole,place going......all an awful shock to start with but we now just go day by day. Very tired by lunch, and some bone pain but hang in there......lots of,good stories out there and some not so good ones to avoid.

[Sharyn]

Re: 1st week of Diagnosis ~ find out ONLY after seeing on bi

by Sharyn on Mon May 28, 2012 6:03 am

Hi Kim,

How awful for you both to be treated so poorly. Is it easy or possible to change drs? I'm in Australia and it seems to be easier for us to change then for you guys

I'm sorry that I can't offer you any medical advise as I am new to this Multiple Myeloma journey too.

I do understand the worry, angst and research that you are doing, as I have been doing the same for my hubby. I get so confused with all the medical terminology and acronyms that I have a little book that I write them in so I can refer to when needed.

I have gained a lot of information from this forum and there are so many knowledgable people on it that I'm sure someone will help you.

Good luck and keep positive

[Nancy Shamanna]

Re: 1st week of Diagnosis ~ find out ONLY after seeing on bi

by Nancy Shamanna on Mon May 28, 2012 8:41 am

hi Dreaming...maybe this would be a time to also ask for a second opinion from another hematological oncologist, if you can. The BMB is used to look at the composition of the blood cells within the bone marrow. If there are sheets of plasma cells, more than the norm of only around 1% normal plasma cells, it is the indication of multiple myeloma. The mutated plasma cells also look different under the microscope than normal plasma cells, which are part of our immune system. The amount of plasma cells can be summed up as a percentage. If it is under a certain amount (10% I think), the condition is known as smoldering, and it is monitored to see if it changes to full blown myeloma.

Sounds like a lot of confusion from your recent doctor's app't and you really shouldn't have to wait four months to get some answers. I don't know how to interpret the 'M' protein result, not being a doctor, but know it is a measurement of the light weight proteins that are spewed off by the mutant plasma cells. They are such a light molecular weight that the kidneys have difficulty filtering them out of the bloodstream. They accumulate and cause a measurable spike on electrophoresis gel measurement. They are not healthy since they can cause kidney problems and also heart problems.

Hope you can get the results sorted out soon and have good discussions with the medical oncologists as to how to proceed next! Best wishes...and I am sure that more knowledgeable people than me can also throw some light on this....the doctors who post general info on this site are very helpful!

[dreaming4adayy]

Re: 1st week of Diagnosis ~ find out ONLY after seeing on bi

by dreaming4adayy on Mon May 28, 2012 12:07 pm

Thanks and Hello to all whom have replied!

His bone marrow plasma level was listed as 10-20%. I checked all other test numbers such as Beta-2 microglobulin 1.8 mg, and most are normal. Just seems like there should be more borderline results?

In the comment section of biopsy it mentions a discrepancy between immunofixation and immunohistochemistry results for kappa and lambda. Both showing restrictions?

Happy Monday!

[Dr. Ken Shain]

Re: 1st week of Diagnosis ~ find out ONLY after seeing on bi

by Dr. Ken Shain on Mon May 28, 2012 3:49 pm

I am not sure where you are being treated, but it is always appropriate to seek a second opinion especially if you are unsure of diagnosis or treatment plan. In diseases such as myeloma I would suggest that you seek out someone who specialized in myeloma. I am sorry to hear that you are having such a difficult time. But is important that you seek answers so that you have a better idea of what is going on.

The diagnosis of multiple myeloma is not simple. And it is extremely important to be diagnosed appropriately. In people with a monoclonal plasma cell disorder it is critical to define if it is Monoclonal Gammopathy of Undetermined Significance (MGUS), Smoldering (or Inactive) Multiple Myeloma (SMM), or Active Multiple Myeloma (AMM).

MGUS: less than 3gm/dL serum M-spike and less than 10% clonal plasma cells on bone marrow biopsy.

SMM: greater then 3g/dL or greater than 10% clonal plasma cells in marrow AND the absence of myeloma-induced end organ damage as defined by the CRAB(I) criteria (HyperCalcemia (Ca++>11.5), Renal (kidney) insufficiency (Cr >2), Anemia (hgb<10 or greater than 2gm drop from baseline), Bone disease, and serious Infections.

AMM: same criteria as SMM + evidence of at least one CRAB(I) criteria mentioned above.

Other studies from your blood, urine and bone marrow will be utilized to determine stage, risk, treatments etc.

For the first two expectant management ("watchful waiting") is the treatment of choice today. For the later (AMM) primary therapy is approriate. If all of the counts are normal and there are no lytic lesions (you should have a undergone 23-26 Xrays (Skeletal survey) it sounds like you/your husband may be smoldering.

But if you truly have 8+ g/dL of paraprotein in your serum, it may be worth having a second look at the bone marrow.

[ICE]

Re: 1st week of Diagnosis ~ find out ONLY after seeing on bi

by ICE on Fri Jun 01, 2012 2:08 pm

I am new to this forum. I posted the new question of diagnosis similar to yours. Unfortunately, even a second or third opinion really hasn't helped my friend with treatment decisions because they are so different. The doctor's post here does really sum it up concisely. If your husband is anemic and there is no other causative factors found for the anemia, then his plasma cell disorder is considered active IF there is a certain concentration of plasma in the blood and bone. My advice is to obtain these numbers from at least 2 different cancer centers before deciding on treatment.