I read your note and want to encourage you NOT to give up. Keep fighting and look how you have already surpassed their sad prognossis. Take joy in that!
I am a 74 year old female and was diagnosed with MM in July 2012 and my oncologist said: " MM is not curable but it is treatable." I totally trust my doctor. I started with Velcade, Revlamed and Dex. and after 2 weeks developed a horrible reaction. 2 weeks in hospital and 4 weeks in reha. Kidneys and lungs stopped funcioning, I turned RED from head to toe, inflamed inside and out and was terribly swollen and weak.
Just started chemo again. 2 times a week, 2 weeks on and one week off. Just had a 2nd opinion with a fabulous specialist in MM at the University of Pennsylvania Hospital in Philadelphia, a Dr. Branden Weiss within the practice of the BOSS, Dr. Stadmayer. I may have misspelled the names.
Dr. Weiss and his assistant spent 2 1/2 hours with me on my first visit and also had some blood work done.
He feels the Revlamed may have caused my bad reaction where the other doctors felt that it was the Alpurinol that I was taking on a daily basis. We will determine later if I am a candidate for the stem cell procedure and also if I even want to go through that. I was told that I would need to spend at least a month in the hospital and I also would not feel good for about 2 month. That aside, I do not think that the jury is in about the benefit of stem cell replacement for females in my age group. I would like to hear from others who have experienced it and how they are doing...........................
If your own doctors have questions, I would think that the specialists here would be happy to give their opinion.
With email and skype it is so easy to converse, no matter where a person lives. Our world is small thanks to technology.
Do you lead a fairly normal life, able to take care of yourself?
I feel very tired at times with my head in a fog many days. I have taken leave of absence from work but hope to get back to it when chemo is done and I am hopefully in remission. I do take care of myself by myself and now drive alone to my treatments and to the weekly blood test at a local hospital.
Please let us all know how you are doing. When you feel lonely or not well, sit down and write on this site. DO NOT GIVE UP! We're all in this together. I have not met a real live MM patient. I have asked where I get my chemo but I guess the nurses cannot point to someone. I would love to talk to a person going through with what I am going through. Are there other MM patients in your area?
Take good care, make sure you eat something nurishing every day and let the sun shine on you a little every day. That will help with depression. I was VERY depressed last Sunday but thank God it only lasted that day.
I took the phone off the hook and went to sleep. My (adult) daughters panicked as they could not get in touch with me. I had not given that a thought.
Liz in Pennsylvania