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My loved one has been diagnosed with multiple myeloma

by Jerseygyrl on Sun Apr 20, 2014 12:57 pm

Hi Everyone,

If any of you are familiar with Dr. Phil, you've often heard him say "today is going to be a changing day in your life". February 19 of this year was a changing day in my life. That's the day someone I dearly love was diagnosed with multiple myeloma.

Call me ignorant but, until that day, I had never heard of multiple myeloma. Well ... actually that isn't totally accurate, I had heard on the news Tom Brokaw was recently diagnosed with it ... but I really didn't know what it was.

I decided the best way to be supportive is to do my research and learn all I can (hence my joining the forum here :) ). I am still quite naive when it comes to multiple myeloma and, try as I may, I don't think I'll ever understand what kappa free light chain really means :oops: but, I'll get there.

All that being said, I am not a doctor or a medication person. I believe in the integrative, alternative approaches. That being said, in the case of my loved one, chemo is necessary. He will soon be starting his 3rd round and it has produced good results so far.

He is looking at the big meeting with his myeloma specialist tomorrow to mainly discuss SCT. I'm not going to lie, SCT scares the beejesus out of me. Not the actual transplantation of the stem cells, but the mega doses of chemo prior to the procedure. Just makes me wonder if this is truly necessary and if there is a better way to manage this.

I'm sure there are those of you reading this who would be able to share your experiences on this very subject. I would greatly appreciate hearing them as I know they would be very benefical to me.

I look forward to getting to know everyone and learning of your journey with multiple myeloma. Knowledge is power and you can never have too much!

God bless!
Kim

Jerseygyrl
Name: Kim
Who do you know with myeloma?: My Loved One
When were you/they diagnosed?: February 2014
Age at diagnosis: 58

Re: My loved one has been diagnosed with multiple myeloma

by Kate on Sun Apr 20, 2014 8:49 pm

Hi Kim,

Many of us on the list had never heard about multiple myeloma until we or a relative were diagnosed. I personally keep a watchful eye on "declining" numbers and I have chosen a non-aggressive protocol and don't want a stem cell transplant. But each one of us has to decide that for him/herself.

I hope things turn out for the best for your loved one and welcome to the forum.
Kate

Kate
Name: Kate
Who do you know with myeloma?: myself
When were you/they diagnosed?: Dec. 2012

Re: My loved one has been diagnosed with multiple myeloma

by Multibilly on Sun Apr 20, 2014 9:27 pm

Hi Kim,

Kate is right that everyone needs to make the SCT choice for themself. It is a deeply personal choice with no easy answer.

This thread might give you some insights into those that have opted both for and against an autologus SCT as an upfront therapy.

https://myelomabeacon.org/forum/looking-for-feedback-on-recommended-first-round-treatment-t1502.html

Multibilly
Name: Multibilly
Who do you know with myeloma?: Me
When were you/they diagnosed?: Smoldering, Nov, 2012

Re: My loved one has been diagnosed with multiple myeloma

by Jerseygyrl on Sun Apr 20, 2014 11:15 pm

Hi Kate & Multibilly,

Thank you for your replies,

After re-reading my post, I realized how it could have been misunderstood. I did not mean to imply the decision of whether or not to have a SCT be up to me. I completely agree that it is a very personal matter.

I appreciate this site and all the valuable information.

Thanks again,
Kim

Jerseygyrl
Name: Kim
Who do you know with myeloma?: My Loved One
When were you/they diagnosed?: February 2014
Age at diagnosis: 58

Re: My loved one has been diagnosed with multiple myeloma

by Christa's Mom on Mon Apr 21, 2014 1:00 pm

Hi Kim,

I'm so sorry that you have had to join our group, but glad you found us! I too joined on behalf of a loved one.

I find all of the drugs used to treat multiple myeloma quite scary! All have their own side effects, some worse than others. Velcade can cause peripheral neuropathy, Revlimid can cause low blood counts, and dex keeps people awake for days. But in the end, they have helped to extend the life expectancy of MMer's well past the 3 - 4 years it had been 15 years ago.

You may want to read some of Pat Killingsworth's columns here on the Beacon site, and on his blog. He has shared his journey with multiple myeloma, including how he has viewed drugs and side effects as his disease has progressed. I find him very pragmatic, and appreciate his real-world stories.

Best of luck,

Lyn

Christa's Mom
Name: Christa's Mom
Who do you know with myeloma?: Husband
When were you/they diagnosed?: September, 2010
Age at diagnosis: 53

Re: My loved one has been diagnosed with multiple myeloma

by Jerseygyrl on Mon Apr 21, 2014 7:24 pm

Hi Lyn,

Thank you for the welcome :)

Yes, you are right, the drugs used to treat multiple myeloma are definitely scary! But ... if they work, that is the important thing.

Its funny you mention Pat Killingsworth, I have read and enjoyed his columns & blogs. It is always good to hear from someone who has been down the road. It makes you feel less alone on this journey.

I hope your loved one is doing well.

All the best,
Kim

Jerseygyrl
Name: Kim
Who do you know with myeloma?: My Loved One
When were you/they diagnosed?: February 2014
Age at diagnosis: 58


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