[Montana Sue]

Two years into my multiple myeloma

by Montana Sue on Thu Apr 17, 2014 10:28 am

I just learned of the Myeloma Beacon and am happy this site exists.

So, my story goes that, after an unusual bout of being exhausted, I went to my primary doc and had blood work thinking it was anemia or who knows what. Got a phone call saying I was in renal failure, go to hospital. That was May, 2012.

I was in renal failure and they tested me, hate that bone marrow aspiration, and told me I had multiple myeloma.

What? Never had even heard of myeloma! I was 61 at the time.

I was on k-dialysis and also on Velcade chemo treatment. Fortunately for me, end of summer, the kidney situation rose above the need to continue k-dialysis. I remain at Stage 4 with k-disease and live a fairly normal life. Responded very well to Velcade and cancer went down to remission during that summer of 2012 into 2013. Continued on Velcade into early Jan. 2013, then went out-of-state and had an autogolous stem cell transplant.

It worked, but I had complications and was hospitalized a month, being told I was in 2% of people having such complications. In October, 2013, went on Revlimid at low dose, due to kidneys. Now, as I approach one year mark, they just discovered I have a set of some soft tissue masses in my abdomen, after my levels appeared within good range, due to a random ultrasound for some other situation. Will have a biopsy this week after CT scan showed and verified problems. I am coincidentally going back to out-of-state cancer hospital for one year check up.

Now what?

They will figure out a treatment plan once the biopsy shows what type of situation. Seems like Revlimid didn't work for me and apparently neither did the stem cell transplant. I actually feel okay, some minor aches, they noted a fracture of rib too, I only have mild discomfort.

This is my story to this date. Thank you.

[Beacon Staff]

Re: Two years into my multiple myeloma

by Beacon Staff on Thu Apr 17, 2014 3:47 pm

Thanks for introducing yourself, Montana Sue, and for sharing with everyone here your experience so far.

Please let us know what your doctors find out when they do further testing to determine what the soft tissue masses are that were recently discovered during your CT scan.

As you probably know, there are a number of other myeloma medications you can be treated with in addition to the Velcade and Revlimid (and dexamethasone) that you've received thus far. So you and your doctors have a number of options they will be able to consider if it turns out that you are relapsing.

In fact, one option that you may wish to consider before turning to some of the newer medications is to see if combining the Revlimid, Velcade, and dexamethasone works for you. You will have to find out how your doctors feel about that opinion. There are some, however, who feel that it can be a good idea to make sure the treatments you already have had are used to their fullest possible extent before switching to other therapies.

Best of luck to you, and please keep us posted on how things are going for you.