Maria's Journey: BREAKING NEWS!!!!!!!!!! YeeeeHaaa!!!!!We have just...

Maria's Journey: BREAKING NEWS!!!!!!!!!! YeeeeHaaa!!!!!We have just...: BREAKING NEWS!!!!!!!!!! YeeeeHaaa!!!!! We have just received notice that the experimental drug that Maria Klump has been taking over the ...

BREAKING NEWS!!!!!!!!!! YeeeeHaaa!!!!! We have just received notice that the experimental drug that Maria Klump has been taking over the past 3 weeks, is working. The drug, Oprozomib, is pushing her Lambda Light Chains(LLC) down. If you recall from our last post, her Lambda Light Chains(LLC), have been rising for several months. The Lambda Light Chains(LLC) serve as a marker for her oncologist, which tells him if her disease is progressing or regressing in her body. The side effects of the drug, however, have increased. Along with the chronic nausea, vomiting, diarrhea, there is also severe acid reflux being felt by Maria. She is on the drug every other week, so she does get a break from taking the drug. Still, this is great news! Thanks be to God who has made all of this possible! Further updates to come.

New Update- September 2013

We have a new update on Maria Klump's conditon in her fight against multiple myeloma cancer. Several months ago, her readings for her lambda light chains(LLC), which is a marker for her oncologist to determine at what stage the multiple myeloma is in her body, have been steadily increasing each month, which means she is currently relapsing from her plasma stem cell transplant that she received in December 2011. She is currently involved in a clinical study at The Siteman Cancer Center/Barnes- Washington University with her oncologist, Dr. Ravi Vij. She is taking an experimental drug called Oprozomib from Onyx Therapeutics, Inc. This is an experimental drug that has been tested on approximately 79 patients thus far. Oprozomib works by preventing the breakdown of protein in cells, causing the cells to die. Cancer cells are more susceptible to these effects than normal cells. Since this is an experimental drug, the long term side effects are not known. Please pray for Maria and her family during this difficult time. There will be more updates to come.

Current status

Sorry all for not posting in so long but things have been crazy in my house. As far as Maria is doing, I would say pretty good. Her hair is coming in nicely and she no longer needs her scarves. We had the family and Gina out to my house for Easter and she looks fantastic! God is so good! She has her rough times and tires more easily. The plan is to continue a lower dose of her chemo drug Revlbmid (sp?) for at least two years to keep the symptoms of the disease at bay. Studies have shown that taking it in this dose has shown to extend the life by 5 years. The insurance again rejected payment but a special fund has approved it so we are so very grateful. She will continue to see her oncologist every 4-6 weeks and will not have any further testing other than blood work unless she becomes symptomatic or if the blood counts change. We have a busy weekend ahead with the out of towners coming in for my daughter's communion and then in two weeks, we will all meet again in Kansas City for Mary's daughter's communion. This will be a busy time for Maria especially with her oldest daughter graduating from St. Monica and then attending Kennedy high school in the fall. We are so grateful for all of the health and well-being of our family and ask that you remember Maria in your prayers because she feels the strength and love that so many strangers have given her! Take care and may God bless all of those suffering with cancer!

Results

This morning Jeff, Maria and I went to see the oncologist, Dr. Vij at Barnes. We got her test results that were done last friday at 100 days post transplant. Definately lots of good news. The three areas they use to diagnose Mulitple myeloma are blood, bone marrow and PET scan images. There was no evidence of disease in both the blood and bone marrow since the chemo and transplant. Also the tumor on her spinal cord is gone so that is wonderful news due to the pain it was causing. The disease is still showing up on her PET scan, although it is less than the one prior to transplant. So she is not considered to be in full remission because it was still detectable but the transplant was a success since it is no longer in the bone marrow. The bummer news is that now it is standard treatment to continue on the chemo drug revlimid at a small dose orally for 2 years which has been shown to add on 5 years to the life expectancy. Unfortunately, their insurance denied payment for it before the transplant and they had to apply for a grant through an organization. So there is a high chance that it will be denied again. Out of pocket costs would be $6000 a month. We are just taking one step at a time and praying that the insurance company will look at the research and give her the best chance to be around for as long as possible. There is no guarantee that the medicine would keep the disease at bay so if they are not able to afford it we will just have to trust in God's plan. Maria is looking fantastic, her hair is growing in and we are celebrating the successes of today and not stressing about the future! God bless all for thoughts and prayers!
Carolyn

100 days

It has been way too long since the last blog post. Things have been status quo for Maria. She is somewhat back to a normal routine of driving the girls around and getting out to do some shopping. She looks fantastic and you would never think anything is wrong. We are approaching the 100 day mark after her stem cell transplant, which means retesting her and getting a bone marrow biopsy and PET scan. She will have these done this Friday, March 2. Our goal is that the disease is less than 10% detectable in her bones. This will be considered a successful transplant and will mean remission, which for this disease has a very wide range. She will get the full results on Friday, March 9th when we meet with her doctor. So in the meantime, prayers for increasing strength and for a very positive outcome from her tests on Friday! We will update after the doctor's appointment. Thank you on behalf of Jeff and Maria for all the kind words, thoughts, and prayers!
Carolyn

Hi Everyone,
I realized the other day when I went to check email that I didn't need reading glasses to read the screen. It was a delayed reaction, I am happy to report. This morning I figured now that I can see normal I should update you all. I feeling o.k. I got my christmas shopping done via my sister who was kind enough to go to the mall for me when she prefers to shop anywhere but the malls. The gifts are all wrapped, I did do that part. I am taking it easy. Hopefully next week I won't feel a little drained with small activity. I go back to barnes on tues. to get this central line removed--YEAH. I still have some of my hair, maybe it won't all fall out. I can just use tubans and not need a wig. I hear wigs can be very hot. I want to wish all of you a VERY MERRY CHRISTMAS! I hope it is a great time with your family and friends. Thank you all for all your prayers! I do believe this is why I am progressing as well as I am.
Lots of love,
Maria