We are patients living with multiple myeloma, here for your support.

THANKS FOR BEING PART OF THIS GROUP.....

I am happy and wanna share to you guys how i feel when my Mom was diagnosed to have this Multiple Myeloma just this January 19, 2012.. still I am on stage of Denial.. She walks like 85 years old though she is just 50 years old.. She have bone pain, and she felt numbness from her waist to lower extremities.. and was undergone MRI and her Hematologist reffered us to a Neuro-Oncologist..... I feel so Broken... I am from Philippines and I know Philippines is not as advance like USA, or other country... Even her hematologist cannot tell us what stage is my Mom now.. I wanna Join this group because I know I can relate with the significant others of the victim of this disease and also with the patient it self..she undergo bone marrow extraction already, what i am feeling upset is her hematologist cant even tell us what stage is my mom, we feel that all she want is money, she dont have even a little concern to us, she doesn't even think that its very hard for us to accept the situation of my Mom.. thats all i am showing her, my love and care.. what makes it difficult for me is I am too far from her, she is in Philippines and I am in dubai working, and i am supporting her Chemotherapy. she is taking Thalidomide with Dexamethasone. I am wondering and thinking if how many percent is the survival rate of this disease. I cant accept that my mom loose weight too much.. and she undergone MRI and her hematologist referred her to a Neuro-oncologist that makes me feel so upset.. I felt that my Mom is suffering too much.... and also me..... thanks for your Compassion... I really feel it.....

0 members like this

Comment

You need to be a member of Life With Multiple Myeloma to add comments!

Join Life With Multiple Myeloma

Comment by Scott orn on March 7, 2012 at 1:01am: Great response Lori. :)

Comment by Lori H on March 6, 2012 at 8:52pm: Thanks for sharing Betina, it is very hard for you to be so far away from your Mom. I agree with looking for another opinion and if there is a MM specialist all the better. I realize that the Philippines is not all that big and it might be difficult to do. Myeloma is not like other cancers ... I was told that there were only 3 stages and that I was in the final stage ... I started off on Dex prior to my stem cell operation, and then was on Thalidamid for maintenance. It is known to cause neuropathy which makes it so very painful to walk. My cousin told me that I look like my Grannie, all hunched over when I walk, my Grannie was 92 when she passed. If at all possible, your Mom should see a Physical Therapist who can write a script for a walker of good quality, and perhaps a cane or two to help her when she walks. One of the things that I found out when I was first diagnosed, was not to believe everything that you find on the internet. Instead I joined a support group, such as this one, and connected with others who are actually living with Myeloma. From the sounds of it, your Mom also needs to talk to a pain specialist. If she can get her pain under control it is much easier to walk. I have also been told that the more walking I do, the easier it becomes ... I know it hurts, but it does help. My heart goes out to her and to you ... research various Drs. and Myeloma clinics. All the best, L

Comment by Scott orn on February 3, 2012 at 2:35am: Wonderful post Betina!

Comment by Kent on February 2, 2012 at 10:18am: Wow Betina. We all understand how frustrated and scared you are. I don't know if your mother has the option for a second opinion. If so, try to see someone who specializes in Multiple Myeloma. Sounds like your Mom may be suffering from neuropathy as many MM patients do, and maybe the neuro-onc can help that. They must have some idea as to staging if she is already on Thalidomide and Dex. Are clinical trials available in the Phillippines? Ask her MD. I know how difficult it is to learn about this disease first hand, but it must be so hard on you when you cannot visit the MD with her. You are doing the best you can do. Keep searching the web for knowledge and support.