[Multiple MySharona]

Rare, aggressive case

by Multiple MySharona on Wed May 22, 2013 12:56 am

My wife's mother was diagnosed with a very aggressive form of multiple myeloma a couple weeks ago. Doctors said she is stage 3 and gave a prognosis of 6-18 months with aggressive treatment. Doctors are saying she's probably had it for years now, and that it went undetected since she also has sarcoidosis, and the symptoms were thought to be part of it. They're hitting her with chemo and radiation therapy currently, along with medication for her kidneys. She also had multiple pulmonary embolisms and has to inject herself twice a day with blood thinners. She's rather young for this from what I've read, in her early 50's. She's already been hospitalized for hypercalcemia which was detected at the last minute. Her side effects are awful and she's beginning to show signs that she may want to throw in the towel and stop treatment. Trying to learn as much as I can about this to help the family make informed choices. Any advice is greatly appreciated.

[LibbyC]

Re: Rare, aggressive case

by LibbyC on Wed May 22, 2013 2:56 am

Hi Multiple MySharona,
I am sorry your mother in law is having a bad time with treatment. I want you to know that during my multiple myeloma journey I have been given the prognosis of 18 months, that there was no more treatment available (they changed their minds) and yet here I am 2 years later and in remission . I have/had chemorefractory multiple myeloma but do not know what the extact chromosomal mutations are. My first round of chemo knocked me for six but after the 2nd round I was feeling much better.

Dont give up hope.

All the best,
Libby

[KrysiaR]

Re: Rare, aggressive case

by KrysiaR on Sun May 26, 2013 2:32 am

Hi Mulitple My Sherona

So sorry to hear about your mother-in-law. When you are having all of these treatments and are feeling at your worst, you start to wonder at times if it will ever end. But she needs to realize that she is a young woman who has you all for support and that's worth fighting for. I was diagnosed in July 2012 and I thought it was the end of the world. After starting my treatment and talking to GOOD doctors who explained exactly what was going to happen, I began to think that it's possible to get better. Today, after a stem cell transplant, I am in complete remission. I have some bone and muscular issues to fix and a cataract from the steroids . The hair on my head is about a quarter of an inch and my 3 eyelashes have sprouted company finally this week. But life is finally becoming a little more normal.

Life throws some of us curve balls and you have to overcome these problems with positive thinking and a lot of support from loved ones. Tell your Mom-in-law that she's strong and can do it and that you love her,

And, by the way, I've met many patients in the last 9 months and doctors often get these time frames wrong!

Hope things work out for you all.
Take care
Krysia