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Re: Just diagnosed with multiple myeloma - 33 years old

by cindylouise on Sun Apr 10, 2016 4:27 pm

I don't have much to add, but I do want to encourage you regarding your weight loss. My husband was a very sickly 119 pounds at diagnosis. He currently is at 190, which is his heaviest weight ever! It really didn't take long once he started treatment for his appetite to come back, and the weight to stay on. I feel somewhat certain you will see some improvements soon!

cindylouise

Re: Just diagnosed with multiple myeloma - 33 years old

by mrgrabau on Sun Apr 10, 2016 5:36 pm

Awesome, because what is really getting to me is the weight. But that is good to hear that your husband gained it all back right. My body is just so sore because I have no meat on my bones.

mrgrabau
Name: Ryan
Who do you know with myeloma?: I was diagnosed
When were you/they diagnosed?: March 27 2016
Age at diagnosis: 33

Re: Just diagnosed with multiple myeloma - 33 years old

by JPC on Mon Apr 11, 2016 6:46 am

Hello Ryan:

At initiation of induction treatment, where you are now, you are suffering the effects of the multiple myeloma, and the side effects of the drugs will kick in. In short, it terms of how you feel and appetite (and such things), this will be the worse. You will be learning what are your myeloma markers (probably the M-spike, but maybe something else like the kappa or lambda light chain). They usually respond somewhat in the first round of treatment, but for most people certainly by round two, then the markers start to go down and your body will feel better.

At the same time, you will be getting to see how your body tolerates the induction medicines. Some people have some problems, but others skate through it. Long story short, you will start to feel better eventually, but it could take a couple of rounds (say two to three months) of induction. I hope you get your appetite back soon, as it is good to not to be too skinny as you are going through this

Good luck to you.

JPC
Name: JPC

Re: Just diagnosed with multiple myeloma - 33 years old

by dogmom on Thu Apr 14, 2016 10:23 am

My husband had lost a lot of weight at the start of treatment as well, but as others have said the treatment makes you feel better very quickly.

He is at the end of his four month induction with cyclophosphamide, Velcade, and dexa­metha­sone (CyBorD) and is scheduled for his stem cell transplant the first of June. He has gained a lot of his weight back and has a great appetite. We see a myeloma specialist at Sarah Cannon Cancer Center in Nashville. My husband was diagnosed December of 2105 at the age of 58. He has been very healthy all his life with only a cold here or there.

It will get better. Good luck to you.

dogmom
Who do you know with myeloma?: husband
When were you/they diagnosed?: December 2015
Age at diagnosis: 58

Re: Just diagnosed with multiple myeloma - 33 years old

by CathyAnn on Thu Apr 21, 2016 9:42 pm

Hey, Ryan, I am a smoldering myeloma patient myself (and a lot older than you), so my situation is totally different. But I wanted to share with you that I have a friend who was diagnosed in her late 20s and is still going strong 17 years later.

Everything is freaky for you now, but hopefully once you get past this first phase of treatment and start to feel better, you'll be able to take a deep breath and see this for what it is. This disease usually rears its ugly head, and then with treatment, you can keep pushing it into the corner for years.

It's hard to see that now I know, but there are lots of reasons to be hopeful. Hang in there.

CathyAnn
Name: CathyAnnCleveland
Who do you know with myeloma?: Myself
When were you/they diagnosed?: 1/22/2016
Age at diagnosis: 56

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