My wonderful and incredibly healthy 75 year old Dad was diagnosed on Friday with MM. We are trying to deal with the fear, grief and anxiety that accompanies cancer.

My Dad has a full skeletal scan scheduled for tomorrow and then we meet with his Oncologist on Thursday.

We have NO idea what questions we should be asking right now.

How do we know if the Oncologist he's seeing has the experience with MM that is needed to provide the best possible care?

We are just feeling so lost, alone and frightened right now. Any help you can give us in knowing how to prepare our family, what questions to ask, how best to make my Dad comfortable, etc would mean the world to our family.

Thank you so much,

Laura

Laura,

This is a scary time. Take a deep breath -- you are not alone. Fortunately, myeloma is usually slow in progressing so there is time to learn and review your options.

Is your Dad having any problems caused by the MM? anemia? kidney problems? bone pain? hypercalcemia? If so, these should be dealt with as soon as possible.

There are many treatment options and what is best for your Dad is yet to be determined. Some people respond to the first treatment they're given, others have to undergo multiple treatments before they find one that works for them. Talk to your doctor about what he recommends and what he sees as future options. Some future options will limit current treatments (ie: if the dr. thinks your Dad might be eligible for a stem cell transplant in the future, there are certain drugs that should not be used now). Talk about the different treatments and their side effects.

Is your onc. at a major cancer center? If not, he's probably not an MM specialist. That's not necessarily a bad thing -- you need someone who you are comfortable with. But, it is a good idea to at least get a second opinion/consult from a specialist at some point. Ideally, you want to put together a team who will work together to give you the best options.

Get information regarding the "type" of myeloma your Dad has (igG, IgA, light chain, etc.) These will all sound foreign to you now but will help you to know how the MM will be monitored in the future. Ask the dr. how he will monitor the disease. And, how often. What other tests will they be monitoring?

At this point, there is a lot you will be learning. You will also learn that there are a lot of people who live fairly normal lives for many years with MM.

Good luck,
Janet

What a great reply, Janet. Thanks so much!

Oh, Janet...thank you so much and God bless you for the lifeline you gave me today.

My Dad is comfortable with his Oncologist. Me, not so much, but that doesn't matter. The Dr is attached to the biggest cancer center in our town and I've heard his name mentioned for many years, so I'm praying that he has the necessary experience to help my Dad.

My Dads actually doing quite well as far as symptoms go. He began having back pain the end of January. Now, it's just "annoying" and hurts only when he sneezes or coughs. He has lost some weight (not enough to be alarming) and our Mom says he's not as interested in doing as many things as he used to. Though he still golfs 4 times a week !! LOL

He has 3 vertebrae that are involved and according to the bone scan, there are also spots on his pelvic bone. I guess tomorrows results of the full skeletal scan will be pretty important.

They've started my Dad on Dextro something or other (sorry, can't remember) and Thalidomide. The Thalidomide scares the heck out of me. We're not sure when the side effects will rear their ugly head, how long he'll suffer with them....or if he'll be side effect free (which we're obviously praying for).

Sorry to be rambling. I just have no one to talk to about this and have never in my life felt so uneducated and frightened.

Thank you again, Janet for reaching out to me. You could never know how much it means.

xo Laura

Laura, would you like to join the support list?

Laura,

Thalidomide and dex are a fairly standard first-line treatment. Many people respond really well to these drugs and have no problems at all.

Probably the most common side effect from thal to be aware of is peripheral neuropathy -- numbness or pain in the extremeties. There can also be problems with blood clots. A fairly uncommon side effect that gave me problems was bradycardia -- a slow heart rate. I'm sure you have received list of things to watch for. Dex has its own side effects but probably the worst part is the ups and downs of the cycles.

Since he has bone involvement, he will likely be treated for that with either aredia (pamidronate) or zometa (zoledronic acid). These are given by IV usually monthly to start and then less frequently. They help to strenthen the bones.

As cancer treatment goes, a lot of the MM treatments are really pretty easy.

Hope all continues to go well,
Janet