[Beacon Staff]

Weekly Poll – Telling Family About Your Myeloma Diagnosis

by Beacon Staff on Wed Feb 29, 2012 3:07 pm

This week’s question is about when you told your immediate family about your multiple myeloma diagnosis.

A few clarifications:

First, we’ll define immediate family as spouse, parents, siblings, and adult children. We realize that people may wait longer to tell young children, so we’ll ask about them in a later poll.

Second, if you are a caregiver or family member of a myeloma patient, feel free to answer on their behalf.

As always, feel free to post comments, thoughts, or feedback in the space below. They can be very useful to other readers.

[Schere]

Re: Weekly Poll – Telling Family About Your Myeloma Diagnosi

by Schere on Thu Mar 01, 2012 4:39 pm

My husband was so sick that when he got in to see the nephrologist he was immediately admitted to the hospital, and we had a tentative diagnosis of multiple myeloma within 24 hours. Within 36 hours, it was confirmed. So all the family knew immediately because everyone was worried about what was happening. It took awhile longer for all of us to understand what exactly multiple myeloma was.

[Marcia]

Re: Weekly Poll – Telling Family About Your Myeloma Diagnosi

by Marcia on Thu Mar 01, 2012 5:06 pm

My husband's diagnosis came about similarly to the one described by Schere. Family knew immediately, as everyone was there due to his sickness. His oncologist was very informative as he educated us about Myeloma and laid out a plan. Actually, until the moment of diagnosis we had never even heard of Myeloma!

[Sherry]

Re: Weekly Poll – Telling Family About Your Myeloma Diagnosi

by Sherry on Thu Mar 01, 2012 8:21 pm

My husband was completely asymptomatic and an abnormality was found in the blood work during a routine physical. The test was repeated, so we had some time to do research. Then we were sent to an oncologist for more testing, so our kids were informed right away about a possible diagnosis of multiple myeloma.

[Clarence]

Re: Weekly Poll – Telling Family About Your Myeloma Diagnosi

by Clarence on Wed Mar 07, 2012 3:09 pm

My diagnosis was in January 2004 at Moffitt Cancer Center in Tampa Fl.. I was 68 years old. At the time Thaliomid was the drug to use. My question was, of course, "How long will I live Doc?" He proceeded to tell me the "5 YEAR" statistics which were not all that great and also confusing to me. When his nurse saw the puzzled look on my face, she jumped in to say "Don't pay any attention to what he said. With the new medications and the pipeline of new drugs being approved over the next few years, It is more likely that you will die of some other cause anyway".

Now, 8 years later, I'm on my third "new drug", Velcade and doing good. Further, there are many more of the new drugs in the pipeline then there was 8 years ago. I did not spend the last 8 years worrying about cancer. I just enjoyed my life.

This is what I told my family 8 years ago:

I'm lucky, because even though Multiple Myeloma is incureable at this time, the research for drugs that will bring it into remission and in most cases will even hold it in a maintenance status, simular to diabetes, is continueing at a extremely fast rate. I will probably die from some other cause.
.
I'm now 76 years old and I believe what I told them is true. I enjoy my life and the great thing is that they enjoy their lives instead of worrying about me.