Multiple Myeloma recent bone marrow biopsy, 75% plasma, to treat or not to treat?

Question

4 years ago diagnosed with MM, 17 % plasma cells 3000 iga, 2.9 M protein conc, no M protein in urine. Did 5 mos of Thalidomide and Decadrone, went to Arkansas for treatment, they said wait as #'s went down to 1.7 and bone marrow biopsy 9%. 1 year later went to cleve clinc dr says disease progresing, 35% bone marrow, 2500 iga, minimal urine protein level, dr said i was a non secretor and it was time to treat. New Dr. came in , stopped the trial, said I was not a non secretor, decided to watch and wait. He thought I had mgus, iga was due to chronic sinus infected for 10 + years, sinus was obleted in '93. ENT opened sinus cavity, drained infected out. Today counts steadily increasing , iga 4460, hemogloblin 10.9, m protein conc. 2.99, protein in urine 7.0, bone marrow biopsy 75%. Top part of sinus is still blocked/infected, question is to treat sinus first? I'm confused about diagnosed, mm dr is waveriing whether to treat and he is leaving the cleve clinic-neg bone scan-47 yo male

Answer 1

Please see the webpages for more details on Multiple myloma. You may seek a second medical opinion on the subject.

Answer 2

First let me say that I'm a Bone Marrow Transplant Nurse.....and you seem very educated on your condition. Which is a good thing, but I also see people focus so much on the numbers that the whole picture becomes blurred. What I'm confused about is if you ever reached remission.....and was your only treatment Thalidomide 4yrs ago? A sinus infection really shouldn't affect the counts you provided.....it would be interesting to know your WBC/ ANC counts....they would be more reliable in evaluating your ability to deal with the infection......are you on any prophylactic antibiotics? I would suggest sitting back down with your doctor and asking some direct hard questions. From what I've read, you don't seem to have a clear picture. I'm hesitant to share medical opinion on such an important topic without the benefit all details. While a second/third opinion is always an option.....and I encourage it. I also know the reality of how difficult it is to change doctors in the middle of treatment. Especially when time frames do matter. So my advice.....put your numbers away temporarily......ask direct questions, and don't leave until your satisfied with your understanding. Is your oncologist wavering on whether to treat the MM, or the sinus? And was your last bone scan negative? While I don't have your answers, I would be happy to help focus on some key questions that may shed some light on this for you......let me know.

Answer 3

Hi,

interesting position - the 75% BMB says you are NOT mgus or indolent. (i'm indolent right now with 25% BMB and IGG of 2500)

i would go back to Arkansas; best MM docs in US are there. your HGB is still pretty good for 75% bmb -

75% M cells in marrow is NOT due to sinus - if you really have 75% of the cells that same ...

you had a min urine level - was that a 24 hour benze jones? if so what was the light chain ratio?

I would call the IMF hotline —staffed by NCI-trained specialists—at (800) 452-CURE (800-452-2873) they are specialist in MM and might be able to give you some question to go back to the doc's. Dr Durrie is Chair of IMF; can't get better than that ( well maybie Dr Anderson and a coulpe of others are in same class but he's one of the leading MM doc's)

good luck - at least there are some new drugs out there like Revilimid and Velcade that are better than the Thal/Dex route.

Jewells
31 months and stilll here

Answer 4

How do they plan to treat this? If treatment will leave your immune system weaker than it is now, then it would be a good idea to treat the sinus infection first.
I am not a Dr or expert on this disease, but my hospital treated a Multiple Myeloma patient with weekly plasma exchange with 5% albumin for years. I do not know how long this continued, because I moved. But it was a very successful treatment for this particular patient. Plasma exchange process is similar to Dialysis, though once a week instead of 3 times a week. This lowers the amount of immunoglobulin in the plasma and improves the viscosity, but does not stop or affect the creation of plasma cells themselves.
I hope they figure out a plan for you soon - best wishes

Answer 5

I will attempt to answer all your questions as best as I can.

1. You might have had smouldering myeloma 4 years ago provided your hemoglobin, kidney functions, calcium level were normal and you had no bone lesions. You DO NOT have and NEVER had MGUS at any time since your first bone marrow showed more than 10% plasma cells. For MGUS, it should ALWAYS be less than 10%.

2. You have NEVER been a non secretor, as your plasma cells are secreting IgA.

3.You MIGHT have a plasmacytoma in your sinuses causing sinus problems. You MIGHT have chronic sinus infections as a RESULT of myeloma, which decreases your ability to fight infections. Please find out what your IgG levels are. IgG fights bacterial infections. In many myeloma patients the levels are low. If they are low then you need IVIG treatment in addition to myeloma treatment to boost your ability to fight infections.

4.Your myeloma is progressing with increasing IgA level, M protein in urine, low hemoglobin and rising plasma cells in marrow. You need to be treated, wait and watch is not an option. You are young and should be a good candidate for high dose melphalan based chemotherapy followed by tandem autologous bone marrow transplant. This means, they will give you hig dose of chemo (melphalan) which will wipe out your myeloma AND normal bone marrow. Then they will give you your own stem cells (which are collected before the treatment) to restore normal bone marrow. Then, the will repeat the wholeprocedure again (thats why its called "tandem".
Other option is to consider drugs like "velcade", revlimid etc. Please make sure that your treating doctor DOES NOT give you "alkylating chemotherapy" , unless if he feels you cant tolerate high dose chemo. The reason is, alkylating chemo will make it difficulkt to collect stam cells and may close the option of a bone marrow transplant. Velcade and revlimid are OK as they dont interfere with stem cell collection.
In summary, I strongly feel you need an auto transplant.
Hope this helps.

Answer 6

Clearly, the myeloma cells are taking over your bone marrow. If you intend to live substantially longer, and are not "throwing in the towel", you want to attack the bone marrow problem promptly and aggressively. Clearly this is not a benign monoclonal gammopathy, (mgus=monoclonal gammopathy of unknown/undetermined significance) as it is severely affecting the bone marrow at this point and you are spilling a lot of the abnormal protein.

BTW, the sinus problem could be a plasmacytoma, just another place the malignant cells have decided to try and set up housekeeping.

Where in Arkansas are you being treated? I sure hope it is the major medical center in Little Rock. Arkansas is not too far from: Mayo Clinic, Parkland in Dallas, U of Ill in Chicago. Are you able to get to a larger institution?

Now, hopefully something to make you smile:
How do we know that the toothbrush was invented in Arkansas?

Answer 7

So sorry to hear about your Mom. My Godmother is in Hospice right now. She has High Blood Pressure of the Lungs, and Fluid around her heart, and a tumor on the front of her brain. They basically just gave up on her, and said because of her age, there is nothing they can do for her. So she is on morphine until the last days of her life. They have stopped all her medication. It is almost her birthday, too! Dec.18th, and Christmas is right around the corner. It seems that these things ALWAYS Happen around the holidays which can be depressing all on it's own! She will be able to "See You" from where she is. Heaven. She will finally be pain free in the next few days. Please let her go. You wouldn't want her to be alive and in pain at the same time would you? Either way, there's no easy way to deal with this.

Answer 8

Do you have myeloma protein in urine and x-ray bone changes. With 75% plasma cells I would treat. Alkeran does a fine job in many patients. MD

Answer 9

my husband had a bone marrow transplant 2 years ago. He is doing great and walks 4 miles a day.

Answer 10

Correction to my husband's posting above... his protein in urine is .70 not 7.0.