Whenever I sell a copy of “Living with Multiple Myeloma” online, I always invite the buyer to contact me and ask questions by phone or e-mail. Here is an interesting response I received from a myeloma patient’s son from Jakarta:
I have some questions for you about multiple myeloma.
But first let me tell you a bit about my mother’s condition.
My mother was diagnosed with myeloma in april 2008 by a doctor in mount elizabeth hospital, in singapore. Her doctor told her that it was inactive and she was treated with combination of thalidomide and dex. She had couple bone marrow procedures to check if it stayed inactive and at the end of 2008, in december, her doctor declared that the myeloma was gone.
During all that time, her doctor never do xrays to check her bone.
Then around April she began to feel pain in her arms, hips and thigh. The docter just told her that her bone was just not strong enough and it’s not because of the myeloma because her blood result was good.
Finally my mom went to get xrays and it turned out that the myeloma was back.
Her doctor then did a bone marrow procedure and the result was stage 3 myeloma because it already spread to her bones.
She did couple radiation sessions but then her doctor suggested another treatment, which is combination of velcade, thalidomide and dex.
The plan was to have 4 cycles of velcade, thal and dex, then have the transplant. Her doctor said that in my mom’s case, it looks like the myeloma is agressive because of the indication in chromose 13. Do you know anything about this? I read somewhere about myeloma and chromose 13 but I don’t really know about it. All I know that my mom’s doctor was very concerned that her myeloma could get very agressive because of this chromosome 13 and the best treatment for her is to get the transplant.
She just completed cycle 1. In the middle of cycle 1, her doctor changed her therapy to combination of velcade, revlimid and dex.
I guess revlimid is better than thal, but it’s soooo expensive. (By the way, we don’t have insurance).
Today her doctor said that she’s in good condition, her myeloma is controlled and now is very low.
If things keep like this, she may only need 3 cycles instead of 4 and then she can continue with the transplant.
From your blog, I understand that you have been thinking about getting the transplant, or rather you doctor has been encouraging you to get one.
Are you going to get one?
In my mom’s case, I think her doctor still recommend the transplant even if she can achive complete response after the end of cycle 3. He said that if she didn’t do the transplant, her myeloma can get worse when it’s back.
Correct me if I am wrong, but you’re still taking revlimid until now right? To keep the myeloma controlled?
How do you feel?
My mom is very weak now, even after she was done with her cycle, she still don’t do a lot of activities. She doesn’t want to go out and when we encourage her to do some exercise, she wouldn’t do it.
Her doctor wants her to do some light exercises, because she’s been lying in her bed for almost a month. Her muscles needs to be used. But she just refused to do it.
I am just concerned that she may actually feel pain. But she told us that she didn’t.
I think I am going to stop now. I am sorry if I ask a lot of questions. It’s just that not a lot of people in Indonesia knows about myeloma. Thanks a lot for reading my email.
Wow! I answered as many of his/her questions as I could and hope to correspond regularly. This letter is typical in or out of the United States. Using hindsight we can always find fault with our cancer care. (Like not taking a full body x-ray and MRI to use as a benchmark!) But considering Febi’s mother’s location and situation, this seems like a reasonable course of action. I will be more than happy to pass on any comments or suggestions you may have. Thanks for helping Febi!
Feel good and keep smiling! Pat