[GBhatia]

Treatment advice for mom (64, recently diagnosed)?

by GBhatia on Sat Jun 28, 2014 11:28 pm

Thank you to the Forum staff and members for a place to turn to. We are looking for all the help we can get with a new diagnosis.

My mother, 64, of the South East Asian origin has recently been diagnosed with multiple myeloma. Her biopsy numbers are not out yet; but for the last month she has gotten the blood work and bone scan done and interpreted by a hematologist and a myeloma specialist in Atlanta, GA where our family resides now.

She started with uncontrolled bleeding from her gum due to a bad dental work, ending up in emergency, and them running tests but unable to find why the blood was not coagulating properly. She got referred to a hematologist who ordered many tests and suspected myeloma based on her numbers. We have seen a specialist at Emory which is reportedly one of the best in myeloma treatment.

We are in big shock because our mom was a very healthy individual otherwise – that is until now. She has been complaining about back aches for a while and some joint issues but that all seemed normal for her age. She also had rib pain for a couple months in winter and we did not think much at the time and she eventually felt better. But the last month has wreaked a havoc on her emotional and physical health. The tests, the unknown, the language barrier, the fear of being disabled and dependent … all has taken a toll.

The Emory specialist is asking for the treatment to begin ASAP even without the biopsy numbers being out. Their regimen is 12 weeks cycle of RVD induction followed by SCT and personalized maintenance. He says that biopsy and the FISH and genetics will only determine the nature of maintenance drugs. Phase 1 and 2 of the treatment are the same for any stage patients.

Here are some numbers and bone scan readings for her so far leading them to the diagnosis. Will post the biopsy numbers as soon as we have them. Including all the test numbers at the bottom as well.

Beta 2 Microglobulin Level: 2.46 mg/L Normal: 0.70 mg/L - 3.40 mg/L
Albumin Level: Resul 3.5 gm/dL Normal: 3.5 gm/dL - 4.8 gm/dL
IGG: 3810 mg/dL (High) Normal: 694 mg/dL - 1618 mg/dL

Scan: Multiple small lucencies in both humeri in concerning mylomateous involvememt. Other structure is unremarkable.

Our concerns and questions are as following.

1. From the numbers so far it seems like she is early stage 1. Is the regimen they suggest the only option? She is physically on the frail side and emotionally a wreck with the fear of the side effects and the worst outcome from SCT. We are wondering who to consult for a less invasive option given her early stages.

2. Is Emory the best place for her treatment?

3. Have people chosen to let go of SCT if they didn’t have a good experience with RVD induction? What happens in that case? Does it do more harm to leave it incomplete than to not do anything at all?

4. Are there more holistic treatment facilities that have had greater success?

5. Are there any alternative therapies that people had any success with?

Appreciate your time and advice, and most of all care and concern.

All test results
--------------------

• Red Cell Distribution Width-SD - 44.6 fL (High) - Normal: 35.1 fL - 43.9 fL
• Red Cell Distribution Width-CV - 14.9 % (High) - Normal: 11.7 % - 14.4 %
• Absolute Basophil - 0.03 10E3/mcL -Normal: <= 0.10 10E3/mcL
• Absolute Eosinophil - 0.61 10E3/mcL (High) - Normal: <= 0.40 10E3/mcL
• Absolute Monocyte - 0.73 10E3/mcL - Normal: 0.20 10E3/mcL - 0.90 10E3/mcL
• Absolute Lymphocyte - 4.78 10E3/mcL (High) - Normal: 1.20 10E3/mcL - 3.70 10E3/mcL
• Absolute Neutrophils - 6.23 10E3/mcL (High) - Normal: 1.60 10E3/mcL - 6.10 10E3/mcL
• Absolute Immature Neut - 0.06 10E3/mcL (High) - Normal: <= 0.00 10E3/mcL
• Immature Granulocyte - 0 %

• Albumin Fraction - 3.77 gm/dL - Normal: 3.60 gm/dL - 4.90 gm/dL
• Alpha-1 Fraction - 0.15 gm/dL - Normal: 0.10 gm/dL - 0.50 gm/dL
• Alpha-2 Fraction - 0.78 gm/dL - Normal: 0.50 gm/dL - 1.00 gm/dL

• Basophil - 0 %
• Eosinophil - 5 %
• Anion Gap - 11 mmol/L - Normal: 2 mmol/L - 11 mmol/L
• Albumin Level - 3.5 gm/dL - Normal: 3.5 gm/dL - 4.8 gm/dL
• Alanine Aminotransferase - 13 unit/L - Normal: <= 33 unit/L
• Lymphocyte - 38 %
• Monocyte - 6 %
• Alkaline Phosphatase - 52 unit/L - Normal: 32 unit/L - 91 unit/L
• Aspartate Aminotransferase - 21 unit/L - Normal: 15 unit/L - 41 unit/L

• Beta-1 Fraction - 0.00 gm/dL (Low) - Normal: 0.30 gm/dL - 0.80 gm/dL
• Beta-2 Fraction - 0.21 gm/dL - Normal: 0.15 gm/dL - 0.50 gm/dL
• Beta 2 Microglobulin Level - 2.46 mg/L - Normal: 0.70 mg/L - 3.40 mg/L

• Blood Urea Nitrogen - 8 mg/dL - Normal: 8 mg/dL - 25 mg/dL
• Calcium Level Total - 10.1 mg/dL - Normal: 8.9 mg/dL - 10.3 mg/dL
• Chloride Level - 96 mmol/L (Low) - Normal: 101 mmol/L - 111 mmol/L
• Osmolality, Calculated - 259 mOsm/kg (Low) - Normal: 275 mOsm/kg - 295 mOsm/kg
• Carbon Dioxide Level - 22 mmol/L - Normal: 22 mmol/L - 32 mmol/L
• Creatinine - 0.70 mg/dL - Normal: 0.40 mg/dL - 1.00 mg/dL
• C-Reactive Protein - 0.64 mg/L - Normal: 0.30 mg/L - 8.00 mg/L

• Free Kappa - 327.2 mg/L (High) - Normal: 3.3 mg/L - 19.4 mg/L
• Free Kappa/Lambda Ratio - 56.41 Ratio (High) - Normal: 0.26 Ratio - 1.65 Ratio
• Free Lambda - 5.8 mg/L - Normal: 5.7 mg/L - 26.3 mg/L

• Gamma Globulin Fraction - 0.34 gm/dL (Low) - Normal: 0.70 gm/dL - 1.70 gm/dL
• Glucose - 125 mg/dL (High) - Normal: 65 mg/dL - 110 mg/dL
• Granulocyte - 50 %
• Hematocrit - 28.9 % (Low) - Normal: 33.3 % - 41.4 %
• Hemoglobin - 9.2 gm/dL (Low) - Normal: 11.4 gm/dL - 14.4 gm/dL

• Immunfixation Interpretation

• Immunoglobulin IgA Level - 24 mg/dL (Low) - Normal: 63 mg/dL - 378 mg/dL
• Immunoglobulin IgG Level Total - 3810 mg/dL (High) - Normal: 694 mg/dL - 1618 mg/dL
• Immunoglobulin IgM Level Total - 46 mg/dL (Low) - Normal: 60 mg/dL - 263 mg/dL

• Potassium Level - 4.6 mmol/L - Normal: 3.6 mmol/L - 5.1 mmol/L
• Lactate Dehydrogenase - 91 unit/L (Low) - Normal: 100 unit/L - 200 unit/L
• MCH - 26.1 pg - Normal: 25.6 pg - 32.2 pg
• MCHC - 31.8 gm/dL (Low) - Normal: 32.2 gm/dL - 35.5 gm/dL
• MCV - 82.1 fL - Normal: 79.4 fL - 94.8 fL
• Mean Platelet Volume - 9.7 fL - Normal: 9.4 fL - 12.3 fL
• Sodium Level - 129 mmol/L (Low) - Normal: 136 mmol/L - 144 mmol/L

• Paraprotein Concentration - 3.14 gm/dL

• Platelet Count - 308 10E3/mcL - Normal: 150 10E3/mcL - 400 10E3/mcL
• Preliminary Neutrophil % - 50 % - Normal: 34 % - 71 %
• Red Blood Cell Count - 3.52 10E6/mcL (Low) - Normal: 3.93 10E6/mcL - 5.22 10E6/mcL

• Serum Protein Electrophoresis

• Bilirubin Total - 0.4 mg/dL - Normal: 0.3 mg/dL - 1.2 mg/dL
• Protein Total - 8.8 gm/dL (High) - Normal: 6.1 gm/dL - 7.9 gm/dL
• Total Protein - 8.4 gm/dL (High) - Normal: 6.0 gm/dL - 8.3 gm/dL
• BUN/Creat Ratio - 11 - Normal: 7 - 21

• White Blood Count - 12.4 10E3/mcL (High) - Normal: 4.0 10E3/mcL - 10.0 10E3/mcL

• Immunofixation Urine

• Paraprotein/24 Hours - 0.0 mg/24hr - Normal: <= 0.0 mg/24hr
• Creatinine Clearance - 80 mL/min - Normal: 80 mL/min - 125 mL/min
• Creatinine Urine Random - 24 mg/dL
• Protein Urine Random - <6 mg/dL
• Time - 24.0 hr(s)
• Time - 24 hr(s)
• Total Volume - 3350 mL
• Total Volume - 3350 mL

Thanks!

[NStewart]

Re: Treatment advice for mom (64, recently diagnosed)?

by NStewart on Sun Jun 29, 2014 6:10 pm

The initial treatment that they are recommending at Emory is a good one and not bad to tolerate. There are really minimal side effects from Revlimid, Velcade and dex. Dex ussually is the one that gives people the most problems, with sleeplessness for a couple of nights after taking it, followed by a crash and a lack of impulse control.

With the numbers that you posted, the doctors are right in wanting to start treatment ASAP. Your mother is quite anemic, Hgb 9 something with normal for females > 12. She has a paraprotein (mspike) of 3 something g/dl. She has bone lesions, etc. Ask if they plan on giving her infusions of either Zometa or Aredia for her bones.

It is always a good idea to get a 2nd opinion from another myeloma specialist if you feel more comfortable with having more than one person look at your mother's test results. Once she begins treatment and the myeloma gets controlled your mother should begin to feel much, much better. During this time you can do the research about whether she wants to have a stem cell transplant or not. There are a lot of people now who are not doing one early in their treatment, but are staying on the drug regimen.

Once the results of the bone marrow biopsy are in the doctors will have a lot more information about how aggressive your mother's myeloma might be. Take a deep breath and learn all that you can so that you can be an advocate for your mother. Make sure that she understands about this disease, the treatment, the outcome, the options, etc. If you can go to a support group and talk with others who are living with myeloma, it would give you a clearer picture of what it means to have this disease and what kinds of experiences people have had or are having.

The best to your mother and your family while you move through this new journey,
Nancy in Phila

[GBhatia]

Re: Treatment advice for mom (64, recently diagnosed)?

by GBhatia on Mon Jun 30, 2014 12:19 am

Thank You, Nancy. That helps. Much appreciated.