[dishevelled]

36 and just diagonosed

by dishevelled on Mon Apr 01, 2013 11:30 pm

Just found out I do have multiple myeloma. I'm supposed to be too young!!!! Now wha? I have 4 kids. It hasn't sunk in. Should I keep working? I have severe headaches, back problems and daily fevers.

[Multibilly]

Re: 36 and just diagonosed

by Multibilly on Tue Apr 02, 2013 7:58 am

Hi Disheveled,

I'm so sorry to hear about your diagnosis. I'm sure it's especially difficult being the mom of 4 kids and your must feel absolutely overwhelmed. But take heart in that there are many options available to you for treatment whereby you can live a long and high-quality life.

Do you have the specifics of your diagnosis yet and have they told you you are symptomatic (i.e. have any CRAB involvement)? If you are symptomatic, what stage are you? Do you know what your key markers are, including the plasma cell population from your bone marrow test, M-Spike/Paraprotein level, Free Light Chain ratio, albumin level, Beta2-Microgloublin level, any genetic abnormalities from your chromosome/FISH tests (you probably don't have those chromosome test results yet), etc?

There are a lot of options open to you and folks here at the forum can help. Take a deep breath, ask lots of questions,get copies of all your lab results and doctor's write-ups, and get a second opinion on any course of treatment from a specialist that knows and works with this disease on a daily basis. And don't rush into any treatment plan without first understanding all of your options and the various tradeoffs.

With this disease, knowledge is power.

[dishevelled]

Re: 36 and just diagonosed

by dishevelled on Tue Apr 02, 2013 9:21 am

The doctor said that the FISH test really confirmed things . I'm going to see a myeloma specialist and I'm having a skeletal survey and MRI's this week. My hips ribs and spine have been hutting so badly that I'm walking with a limp. I have had a fever every day for 1 yr. My headaches are debilitating. I'm having memory problems on top of that. The Dr said I need chemo and stem cell transplant. I didn't ask many questions because I felt like I was dreaming. I laid awake all night last night and getting ready for work. My job is very physical and causes me a lot of pain.

[LibbyC]

Re: 36 and just diagonosed

by LibbyC on Sat Apr 06, 2013 6:16 am

Hi Dishevelled,

I was diagnosed at 43 with 2 young children so can understand a little of what you are going through right now.

As Multibilly says "Take a deep breath, ask lots of questions". I would add, take someone with you to your doctors appointments. Write down your questions and leave space for the answers.

One thing I found very helpful was friends in the local community set up a food roster for us. It started when I was in hospital and continued on and off for about 2 years. We would leave an esky (dont know if they are called eskies in the States) at the back door and whoever was on the roster for that night would put a meal in there. It was great as my husband isn't a cook and it was one less thing for him to worry about when I was in hospital.

Take care,
Libby

[JBarnes]

Re: 36 and just diagonosed

by JBarnes on Tue Apr 09, 2013 4:51 pm

Heather, Back in August I could not walk due to hip and leg pain. I got hospitalized due to the pain and thats when I found out I had Myeloma. They did a MRI on my hip and legs and found numerous lesions on the bone. I did two weeks of radiation where they hit the lesions each day except weekends. I did get sick from the radiation but when I was done I was walking and had much less pain. Started chemo with VRD and after four cycles I was feeling fine. I still get some bone aches in my hip as the lesions will take a few years to heal but I have not had to take any pain meds since Sept of last year. Bottom line, you will feel better although the treatments themselves may cause you some temporary issues. All we can do is keep plugging away hoping for the best. I think being younger gives you a edge over us old farts! Jerry