More about the patient conference at Millennium tomorrow. I received this e-mail from Debbie Stanley yesterday and, with her permission, wanted to share it with my readers:
My husband had tandem transplants in April 2005 and September 2005. They
didn’t put him in remission so he started Velcade treatments. He had to stop
after 3 treatments because of the PN but it put him into remission for 2
1/2 years. He started to come out of remission in December 2008 but our
oncologist didn’t react until March 2009 when it had progressed even more. They
put him on chemo treatments of Doxil without the steroid because of
avascular necrosis of the hip caused by the steroids. After 3 treatments, his
numbers continued to climb so the chemo was stopped. In June, his kappa free
light chains (that are supposed to be 19 or below) were up to 1700. The
oncologist told us that the chemo wasn’t working and he didn’t know if any one
would and he recommended that my husband go into a clinical trial at the
University of Penn. At that point we went for a second opinion at Penn State
Cancer Institute at Hershey Medical Center. That doctor sent us home with a
list of 6 options, the first one being Revlimid.
Revlimid is a pill that he takes once a day for 28 days and then off for 7.
It is very expensive – over $11,000 for 28 pills. At first the insurance
company declined it (he has Medicare with Humana as a supplement). The
doctor’s office appealed it and it was approved. But it was so expensive that
it put us into and out of the Medicare “donut hole” with the first month’s
prescription and the first month’s co-pay was going to be $4500! And the
monthly co-pay after that was going to be $500. We couldn’t afford that – my
husband is on disability and I work in retail. So they applied to get us into
a grant program that we were approved for and our co-pay is only $25 a
So after jumping through many hoops to get the drug, after two months on
Revlimid my husband’s kappa free light chains are down to 121. We still have
quite a way to go but that’s a big difference from June.
The doctor in Hershey told us that another transplant would be the last
option if we were told the only answer was Hospice mainly because of the risk
I hear stories like this one practically everyday. There are so many facets to a story like this; tandem transplants, a number of different side effects and therapies. All are instructional and important. But lets focus on the financial part of the story. I checked with Debbie and her grant for her husband’s Revlimid is through the Chronic Relief Fund. How cool is that! This story is a great example of how a persistent patient caregiver/advocate like Debbie can make a difference. Debbie’s husband is lucky to have her! Check today’s post on my other blog, www.HelpWithCancer.Org if you would like more information about the Chronic Relief Fund.
Feel good and keep smiling! Pat