We’re excited about what you can go on to do for those affected by cancer. We hope you are too. Write something today about your experience and you’ll be starting your own online movement. And get inspiration from Nick York, another advocate in HealthUnlocked here bit.ly/hublog1
Great to have you here!
I just signed up today. I'm so excited that this has been created! My name is Justine. I have multiple myeloma. I was diagnosed in 2004 at age 34! In 2009 I had a auto stem cell transplant at Stanford University and July was my 5 year celebration of "remission". This September will be 10 years for me. I take Revlimid 21 days a month to keep the cancer dormant or in "remission". I also have an IV treatment of Zometa every 3 months to help my bones. I have some side effects. Mostly neuropathy in my fingers and feet. I have chemo brain and I get tired. On a positive note, I'm so HAPPY to be where I am today. I have learned a lot through my journey and I would not change a thing. I would not be who I am had I not gone through all this. People can survive and leave a pretty normal life. No death sentence here! Thank you for including me in this new program!
I'm also glad you're here. I can only imagine that your experiences will be invaluable for other young adults facing myeloma.
hi my name is Carol, and I've had myeloma for 5 years. I never have had a remission. I have had 2 stem cell transplants and a lot of chemo . I used to be a healthcare worker until 4 years ago. Now my immune system is too weak to be around sick people. I have good days and bad days, & I enjoy the good days. I have a 4 year old granddaughter that I am crazy about.I am currently on pom and dex and doing pretty good. I trying to get over blood clots.in both my lungs. I,'ll be glad not to be so sob.best wishes everypme, carol
Hi Carol. I'm very happy to have you here. I'm sure it must be very challenging to have a weakened immune system while trying to spend time with your granddaughter.
I'm curious: Do you think your professional experiences in health care have helped you as you live with myeloma? What advice would you share with other people?
I am a 75 year old man in Andover, Massachusetts who was diagnosed with multiple myeloma in May of 2009. They watched me for almost a year and then began treatment in March 2010 with Revlimid and Dexamethasone. It worked well and my numbers came down quickly.
Autologous stem cell transplant January 1, 2011. I had nearly two year remission until November 2012 - no maintenance. I began a clinical trial with anticancer vaccine made by fusing my dendritic cells with my myeloma cells. I got 4 injections of this vaccine before and after the stem cell transplant. I am not sure if it helped, but it was worth the effort.
In January 2013 I started treatment with Velcade, tabalumab (double blind clinical trial) and Dexamethasone. Halted treatment in April 2014. My blood numbers were good, but not perfect. I took a "vacation" from treatments for two months. My numbers rose quickly during the "vacation" so I am now being treated with Revlimid and Dexamethasone. It is working well.
Currently I am a 5-1/2 year survivor. I am fortunate that I have had no bone or kidney problems.
