[jongky]

Newbie - diagnosed at age 29 a few months ago

by jongky on Sun Mar 23, 2014 5:42 am

Hi my name is Raymond, 29 years old and was diagnosed of with multiple myeloma last November 2013. Yes, you read it right 29 years old. I'm also diabetic (hereditary) and have a kidney stone in my right kidney. Geez! How lucky am I?

I'm a Venue Manager in a resort. and have a beautiful daughter who just turned 1 a few days ago.

Im about to end my 4th cycle of chemo this Wednesday. Velcade, dexamethasone, cyclophosphamide [Cytoxan].

Also using Eposino [epoetin alfa, Epogen, Procrit], Zometa.

Hope to get some support group/friends/family.

- Raymond

[kjpoppit]

Re: Newbie - diagnosed at age 29 a few months ago

by kjpoppit on Sun Mar 23, 2014 10:15 am

Hi Raymond, you have come to the right place for some support. Yes, I was shocked to see your age. You are the youngest I know of. I am sorry you needed to find this website, but it is full of wonderful information and support from all over.

I hope you are doing well with your treatment regimen. I just finished 4 cycles CyBorD [cyclo­phos­pha­mide + bortezomib [Velcade] + dexamethasone, aka VCD] also. I found it to be rather tolerable and hope you do too. My next step is a stem cell transplant.

Best of luck to you,

Kim

[Kate]

Re: Newbie - diagnosed at age 29 a few months ago

by Kate on Sun Mar 23, 2014 5:42 pm

Hi Raymond,

There is a young man on the list by the name of Mark, who was originally diagnosed at age 19. He was very helpful when I requested information on having chemo only and staying away from a transplant.

Here is the link to one of his posts to me and there are others to different subjects:

"Chemo only treatment - no stem cell transplant," Beacon forum discussion started February 19, 2013 (link to post by Mark in that discussion)

Kate

[Dr. Ken Shain]

Re: Newbie - diagnosed at age 29 a few months ago

by Dr. Ken Shain on Fri Mar 28, 2014 7:20 pm

I am sorry to hear about your diagnosis.

As you have learned, multiple myeloma is a disease of 69-70 year olds. Unfortunately, is does present in young folks such as yourself. I hope that all is going well with therapy. If you are not already doing so, I would recommend that you make every attempt to get to a myeloma specialist / treatment center. As with every patient, it will be important to have all the appropriate opportunities for care (treatment and supportive).

Please keep everyone informed how you are doing.

Best wishes.

[lys2012]

Re: Newbie - diagnosed at age 29 a few months ago

by lys2012 on Fri Mar 28, 2014 10:32 pm

Sorry about your diagnosis. Club membership nobody wants! There are some of us younger people who post here. I was diagnosed at 32, but was sick with active myeloma for two years. Doctors just didn't figure me out took getting really really sick. I'm doing well now, please stay hopeful