[Martha]

A little over 2 years now since diagnosis

by Martha on Mon Oct 20, 2014 11:41 am

I feel almost as if a miracle has taken place. A little over 2 years ago, my spouse was diagnosed with a very aggressive case of multiple myeloma. In four months, she went from normal blood tests to Stage IV multiple myeloma. Her hematocrit was down to 5.2 and she required regular blood transfusions. She underwent 6 cycles of CyBorD [cyclophosphamide, Velcade, dexamethasone] before having her stem cells harvested.

Then went on Velcade for maintenance until insurance issues could be taken care of. We ended up travelling to OHSU for her stem cell transplant about a year ago. We decided that since Velcade was working so well for her. Initial test said she was del17 p53, but doctor later said it was not a deletion but instead a possible trisomy. But it was extremely aggressive.

She is IgG and before auto stem cell transplant showed lambda mono bands. Post transplant, both kappa and lambda bands are present but now, instead of saying they are mono bands, they are now showing signs of being oligoclonal.

Her chem panels are now almost completely normal. Her anion gap without K was for the longest time 1 or 2, but now it is about 8. The working in her immunofixation serum details, states multiple trace kappa and lambda bands. Favor Oligoclonal banding. My understanding is this is a good thing?

She went from being told that, if it were 10 years ago, she would have been sent home to die.

For now her only maintenance is a sub-q [subcutaneous] shot every 2 weeks. She tolerates it very well.

However, I am a little concerned as to what kind of time frame we have till her body may start forming a resistance to Velcade and would love to know what alternatives we have.

We like the idea of staying with the same drug classification. So far she has not taken any Revlimid as far as I know. We believe she got multiple myeloma from an adverse reaction she had about 6 years ago with Zometa.

[TiaCarolina]

Re: A little over 2 years now since diagnosis

by TiaCarolina on Mon Oct 20, 2014 3:22 pm

Hi, I was taken by surprise by your last line. Do you have confirmation that Zometa could be the cause of multiple myeloma? Do other bisphosphonates such as Fosamax [alendronate] also potentially cause multiple myeloma?

I have been trying to determine what could have caused my diagnasis of smoldering myeloma in July of 2013. I did have a cousin that passed away from multiple myeloma several years ago.

[Dr. James Hoffman]

Re: A little over 2 years now since diagnosis

by Dr. James Hoffman on Mon Oct 20, 2014 5:49 pm

While we often do not know the 'cause' of an individual case of myeloma, it is not uncommon for patients and their families to have their own thoughts on the matter. For the sake of alleviating any concern on the part of readers, there is no evidence that bisphosphonates cause myeloma, and >95% of patients diagnosed with myeloma have never been exposed to a bisphosphonate.

Just wanted to clarify ...