[mrscac0405]

My mom was just diagnosed with multiple myeloma

by mrscac0405 on Tue Sep 29, 2015 10:32 pm

Hello,

I just spent some time reading through some of the forums and everyone seems very helpful, so I thought I'd go ahead and share her brief story and ask some advice. This is all very new to me, so forgive me if I word any lab results info incorrectly.

My mom (age 70) has been having leg pain, gets sick very easily, loss of appetite, and weight loss, so after tons of blood work since January she was finally just diagnosed with multiple myeloma 2 weeks ago after her M protein came back at 4.6 g/dL (46 g/L).

We assumed she had lesions on her legs because of her intense pain, but her PET/CT just came back showing no activity on her legs. Her oncologist doesn't understand the leg pain, so I'm concerned about this. She does have a lytic lesion on her "right frontoparietal calvarium" (right side of her eye), anemic (10.3), and 60-70% plasma cells.

I just had her move in with my family and am taking care of her as best I can since she is in so much pain and can barely walk. She will start treatment with the cyclophosphamide, Velcade, and dexamethasone (CyBorD) regimen on Friday, and her oncologist said to expect at least 3 rounds of chemo, days 1, 8, 15, and 22. She said I need to keep her and my 6 month old son at somewhat of a distance since he harvests germs, and she needs to be weary of going to restaurants or enclosed spaces.

I just feel bad she will be basically a hermit in her own area downstairs while on chemo, so my question is, if you or someone you know was treated with CyBorD at around my mom's age, how much time did they have between being on chemo for 3-6 rounds and then starting chemo again (remission) to resume their normal lives?

I am 30 years old and didn't expect to take on a caregiver status for many years, so it's all very overwhelming right now ... just trying to stay positive and support my mom however I can.

[Tracy J]

Re: My mom was just diagnosed with multiple myeloma

by Tracy J on Wed Sep 30, 2015 9:10 am

Hello and welcome to the forum. I'm sorry you need to be here.

It is perfectly normal to feel overwhelmed at this point. It's the rare person who didn't feel that way. Give yourself time to get accustomed to your new surroundings. It does become more familiar. Give your Mom the same latitude. It's not easy.

I'm assuming your Mom's doctor will track her immune cell counts as treatment goes along. Then you can adjust her exposure as things go along. When her counts are up, she can have more outings and interaction. When her counts are down, she'll spend more time separated from others. At least she won't need to be separated all the time.

Good luck!

[Missumom]

Re: My mom was just diagnosed with multiple myeloma

by Missumom on Sat Oct 03, 2015 12:04 am

Hello as I am so sorry about the diagnosis of your mother. I can understand it can be so overwhelming from my own experience as my mother had myeloma as well. I as well never expected to be a caregiver in my thirties. The only difference is that my mother lost her battle due to a kidney biopsy gone wrong. Unfortunately, she passed away at the age of 68 this past September due to her myeloma complications only 55 days after being diagnosed.

On the other hand, I hope your mother does well and I can't she a reason why she wouldn't. Your faith, courage, patience, love and presence alone will help your mother tremendously. The only thing I can't relate to you is the chemotherapy part as my mother never got the chance. However, I do recall her oncologist saying that cybor-d would have been used. So unfortunately, I relate to you in many ways but just not the treatment part.

Never lose your perseverance and always believe in your mother. I wish your mother all the best in her path to a strong recovery.

From Gus