On 1/3/2008 MaryAlexis wrote:
Now, I do not want to discourage anyone, but my father died of MM 11/10/07. He was 50 years old and had been diagnosed in March of '06. The doctors say his MM was very aggressive even after being on thalidomide and having a stem cell transplant.
I've become obsessed with the disease and despite losing him I find myself wanting to learn more and more about what killed him.
I guess the only reason I am posting is to let people on here know that I have been reading their posts and that I wish them the best of luck. Just never give up the hope.
Alexis
Hi Alexis,
I am so sorry to hear about your Dad.. My sister Denys is 55 and has a "the worst form of mm". She was diagnosed in August of 06 and hasn't responded to any treatments to date. She was on revilimid, had a stem cell, and was on velcade. My sister is doing awful. She has formed two tumors in her back, now there is one in her neck, and a small one in her leg. The MM has also formed a mass in her pelvis and groin area which they are unable to remove. She underwent radiation and so far it looks like this also has failed. My sister says she will not go back on the Velcade because of the nerve damage it has caused in legs. She is in relentless horrible pain in her legs and feet. I asked her what will she do? She doesn't know yet and says that there really aren't many options left for her, but the velcade is out of the question. She will never go on it again like she was it was actually killing her.. I am hoping her Dr. suggests the Rev/Vel/Dex combination I am told this might work for a few months but then she will be right back where she currently is. Deny said that she has started to hunch over in her back now. I am so upset that the end for my sister could quite possily be grownig near. I don;t want to be selfish and have my sister living with this pain because I can't stand the thought of ever losing her. I know it is very hard for her to have to live everyday in pain. I do understand that this is no quality of life for her at all. We did go to UMAS in LIttle Rock for the stem cell transplant. The care was good but even they so far were unsuccessful in helping Denys live any sort of normal life.
My heart really goes out to you and your family. I took my parents to the airport yesterday. My sister has been home in Tampa and they went to see her and help her with her daily activities. The hospital removed one of the larger lumps on her back last week and we havent' recieved the path report yet. Is it really going to matter I ask myself whether the tumor is benign or malignent? She has MM and it has already gone into both Tibia's in her legs.
I cry alot , knowing that my sister could only have a few months left to live, no-one knows for sure but I am told her Dr. isn't very optimistic at all.
Could you tell me alittle about your dad , did he try everything Denys has done? Did he have pain in the legs? Did he develope tumors?
I don't mean to ask so many questions but I love Denys with all my heart and yet I still remain hopeful that they will give her some magic pill and it will go away for a least a few more years.
Thanks and God Bless
Susan