Friday, July 27, 2012

Good News on the Myeloma Front

FDA Approves Kyprolis (Carfilzomib) For Relapsed And Refractory Multiple Myeloma 
(From the Myeloma Beacon and the MMRF)
The United States Food and Drug Administration (FDA) has approved carfilzomib, which will be marketed under the brand name Kyprolis, for the treatment of people with multiple myeloma who have received at least two prior therapies. Specifically, Kyprolis has been approved for myeloma patients who have already been treated with at least Velcade (bortezomib) and either Revlimid (lena­lido­mide) or thalido­mide (Thalomid) and who have also progressed on or within 60 days of completing their last therapy.

“I am very pleased,” said Dr. Vincent Rajkumar from the Mayo Clinic. “Carfilzomib is an excellent new drug, and this is great news for myeloma patients.” Onyx Pharmaceuticals (NASDAQ: ONXX), which is the company that will market Kyprolis, announced during a conference call with analysts this afternoon that the drug will be available on the U.S. market August 1.

Also during its conference call today, Onyx announced the price of Kyprolis. The drug will cost $10,000 per 28-day cycle at the recommended dose for a patient of average size.At that price and based on FDA-approved dosing schedules, Kyprolis will be the most expensive drug approved in the U.S. for multiple myeloma. In comparison, Velcade costs between $4,000 to $8,000 per 28-day period, depending on the frequency of dosing, and Revlimid costs $7,900 per 28-day period at the FDA-approved 21-out-of-28-day dosing.

“The approval of Kyprolis is an immensely important milestone for the multiple myeloma patient community, which continues to face significant unmet need in terms of safe and effective treatments for advanced disease. While we have seen tremendous progress in the past decade, multiple myeloma remains incurable,” stated Kathy Giusti, Founder and CEO of the MMRF and MMRC and a multiple myeloma patient. “We commend the FDA and Onyx for their dedication to enabling patient access to Kyprolis..."

EZ and I have been reading and hearing about carlfizomib for over a year now and we rejoice in its approval for refractory patients who have received at least two prior therapies and find them failing to contain the myeloma. Though it has been used in clinical trials, patients now have an FDA approved drug to fight advanced disease with, which is critical in their battle. While we are grateful that EZ remains in remission, we celebrate with those who need another drug to add to their arsenal.

As you can see by paragraph three above, the cost of life-saving chemotherapy for multiple myeloma is unbelievable. Krypolis will basically cost $10,000 a month. EZ has been on Velcade, and is currently taking Revlimid (about $8,000 a month). As he recently transitioned from Cobra to Medicare (on July 1st), we were shocked at what a prescription plan was going to cost us, with its premium and doughnut holes. Basically it was unaffordable due to the monthly Revlimid cost. Fortunately a series of phone calls led us to the Patient Access Network (PAN) Foundation

Patient Access Network (PAN) Foundation

PAN is an independent non-profit organization that provides assistance to underinsured patients for their out-of-pocket expenses for life-saving medications. 90 cents of every dollar donated to PAN goes directly to our patients. Since 2004, PAN has awarded hundreds of millions of dollars in assistance to patients in need. We offer help and hope for a healthy tomorrow for the growing underinsured population struggling with increasing out-of-pocket treatment costs.

PAN, along with the grants from the Leukemia and Lymphoma Society (LLS), have made it possible for us to continue to get the medication and treatment EZ's multiple myeloma requires. If you have a blood cancer and haven't contacted these two organizations for help with your treatment costs, co-pays, and prescriptions, we urge you to do so. We are so very grateful for their help.

Have a great weekend everyone!

Thursday, July 26, 2012

Blogging, Birthday Dinner, Board Games and Breakfast Buns!

This officially ends my posts about our week in Boone with the girls and grandkids. Ah the memories...

Tuesday, July 24, 2012

Leah's Birthday Celebration

EZ and I were so thrilled to be able to celebrate Leah's 29th birthday with her, along with Emery, Tara, the Nats, the Sams, and Mom. One of the highlights of our celebration was the release of a special lantern Tara brought for Leah. Lighting it and waiting for it to inflate was a bit scary, but we persevered and it was amazing to watch it take off over the treetops. Here's to the next year Leah...up, up and away you go!

Next it was time to light the sparklers Tara brought. Unfortunately they were more "smokelers" than "sparklers", but we created some fun memories!

We took the celebration inside for a birthday dinner, followed by a skype session with Kyle, presents, and a vanilla/heathbar ice cream pie. I love that Kyle got to be a part of the birthday song via the computer. See his cute face on the screen?

After the little ones went to bed we enjoyed a good old fashioned game of marbles. Sure brought back memories of when EZ and I were kids! We couldn't get over how much Milo wanted to be part of the circle. Something about the marbles just fascinated him as he snuggled up next to Natalie.

We had a wonderful time together in Boone and loved watching all of our grandchildren play together. Having a birthday celebration was a great way to end our week...the icing on the cake!

Monday, July 23, 2012

An Afternoon at the Park

(Before I begin I just wanted to say how saddened we are by the tragedy at the movie theater in Aurora, Colorado. The horror of that event is frightening beyond my imagination, and our prayers are with those who lost loved ones, and those who are fighting to recover from their injuries. Life is precious and we never know when things can take a drastic turn. Lord, keep us from evil, and help us to love one another.)

When it comes to grandchildren and dogs, both sure do love an afternoon at the park. So when it wasn't raining, we were quick to head to Valle Crucis for some fun in the great outdoors. The pictures pretty much say it all...we had a great time!


Friday, July 20, 2012

Warm Summer Days, Family and Precious Memories

EZ, and I recently enjoyed a rare opportunity to spend a few days at the cabin with Mom, our two daughters and ALL the grandchildren. Rain or shine we had a great time cuddling, swinging, exploring, picking flowers, reading and just watching kids be kids. Seems like all too often we don't make time for the 'simple things' anymore; the things we did as kids like being outside, finding snails, playing marbles, or swinging on a front porch. We loved every minute of our time together (so sorry Jamie, Kyle and Nick couldn't make it...we missed them!) and hated to see our week come to an end. Times like these refresh the spirit, nurture the soul, and give us memories to treasure. Leah took most of these pictures and I just LOVE how she captured the colors of summer with such clarity.

Have a wonderful weekend everyone!