Very interesting

Excellent article - thank you for the well-written and concise explanation.

Gary,
Very informative.Patients must take an active roll to fight this disease. In certain cases, some have know idea of their numbers, light chain etc.They do not even confer with a MM specialist. The way I can fight this disease is expanding my knowledge of the latest advances etc. This is why your articles are so important. They are easily understood and hopefully will help educate .

The bad thing is that 20% or more of patients died in the first year from a delayed diagnosis.

Diagnosed Nov 2013. Still on velcade and dex. Have been suffering bad diarrhoea for some months. Any ideas

Diagnosed last week. Lots to learn!

My mother was diagnosed 12 years ago. The doctors caught it in the very early stages, which is of utmost importance. A simple blood test is all it takes. She also has great doctors and she has a positive outlook. Also very important!

Gary:

I've been on VRD since being diagnosed 5 months ago. Occasional constipation has been my only side effect.
Getting the Velcade shots in my stomach have helped prevent neuropothy, I'm told.
The VRD have caused my numbers to go in a positive direction. I take 25 mg of Revimid each day (21 days, then off 7 days) and 40 mg once per week of Dex.
I'm 74 and retired, but think I could work if I were younger or wanted to. My Oncologist says transplants should not be needed due to advancement in drug research.
Hope this helps. Best of luck.

I don't agree with most of the premise of this article. My partner was diagnosed with aggressive MM, immediately sought treatment at a top cancer hospital with a top MM specialist, and they still could not do anything to halt its progression. He died 9 short months later. It was not because of a lack of awareness or quality of care.

Lenard, HIPA rules have prevented this from happening unless the patient agrees to sharing data. As yet this has not occurred, that I know of unti the MMRF has started a program to do that. Now Celgenes and Taketa have added another 8000 patients to the data base. Would'nt it have been great if all 25,000 newly diagnosed each year would have been part of the study. The CURE is in the history, but like you no one has taped it as yet. OUTSTANDING question!

Pam, I can see you were not satisfied with your husband's doctors response. I would not be either. Staging is important in that patients in stage 1 have a life expectancy twice a patient in stage 3. A more important measure is genetic testing to determine how aggressive the disease might be. FISH test and GEP test will provide that information. A great example of how this impacts care is outlined by Mayo Clinics mSmart treatment recommendations. You can see them at the link: https://www.msmart.org/
I have a lot of information at www.myelomasurvival.com and at the bottom of the home page is a number of excellent links. The statement "you either have it or you don't" would show me a true level of ignorance of the complexity of myeloma. You may want to find a myeloma specialist from the list at: http://www.myelomasurvival.com/myeloma-specialists-listing.html

Pam - Your husband was diagnosed in March of this year; I was diagnosied on April 29, 2016. I just got home yesterday from my 2nd stem cell transplant of my own cells. My doctotor is a Multitilple Myeloma specialist and has been for may years. My local oncologist said you have basically two years; we have some good chemo for thos two years to make like good. I looked at him and said that won't work for me. I came back the next week for my chemo and asked to have my primary chare changed over to Dr.
Guido Tricot at the Multiple Mylemoma Program at Holden Comprehensive Cancer Center - Iowa's Largest NCI Designated Comprehensive Cancer Center; Is known for it's tandem autoglous transplant treatemnet.

IN 7 months I am in remission. 89% of my blood cells were cancerous on 4/29/2016; today they are zero. I will be on chemo as a maintenance for the next two years. They have treated over 5,000 Multiple Myeloma patitients. The reason I chose them (besides being in my home state) is they believe in a vey aggressive fast approach to treatment; for a life in the future.

The last 7 months has not been a picknkik. I sometimes wondered if I would make it with a 2 week, 3 week and 5 week hospitail stay in Iowa City; this was a lot of time away from home and my loved ones. But, I think well work it. I am 58 years old and a grandmother of 5. I want to be around to play with them and the ones that aren't here yet. All the daily tials and tributes I posted to the posthope website below; hope this all helps you.

http://posthope.org/debcummings

My sister, 47 yo, was diagnosed with MM a few days ago and the news devastated my entire family. We are shattered but try to be strong to help her through this difficult time. We live in So Cal and believe we have great access to MM specialists. Appointments are being made to seek second and third opinion, with City of Hope and Dr. Berenson, do you think these institution/experts are good or should we try to go to Mayo Clinic?
She's young and has no symptoms. Her bone marrow biopsy is fine so I think she has a high chance to get treated. Waiting to get PET scan and staging.
Thank you so much and we need a lot of prayers.

Research mainly benefits MM patients who are diagnosed in their younger years. Patients over 65 are most often not candidates for stem cell transplants. Of the people I have had encountered, those over 65 at diagnosis, they rarely survived over 2-3. It could be the delay in diagnosis or co-morbidities? I am not sure but we certainly do not seem to focus research on older patients.

My husband was disagnosed this past month (Oct 2019). He had two lesions. One in his left femur and one in his right pelvic/femur. They did a screw and glue in his right pelvic and inserted a rod in his left femur because they were worried they weren't strong enough to carry any of his weight and could fracture. My husband is 49 years old. Now that his surgeries are done, they are planning to do radiation in these areas, along with Chemo and after checmo, a stem cell transplant. Before they start radiation they want to remove healthy stem cells to freeze for his stem cell transplant. We are working with a Myeloma specialist at Froedtert Hospital in Milwaukue, WI. Besides these treatments, what can we expect once he has finished his treatments?

As his spouse, do they have support groups for family members. We have come to terms that this will be apart of our lives moving forward. I want to know what type of quality of life with my husband have or should expect to have?

From what we are understanding my husband is between a stage 0 and 1.