Thursday, November 13, 2014

Thank you, Lord-- myeloma progress continues!

Do you know how frightening it is to have cancer? Unless you've ever gotten The Diagnosis, you can only imagine. Let me tell you: It's HORRID. As awful and terrifying as you think it might be, it is worse. That said, once the shock wears off and you enter treatment, life continues. You live within your new reality. And your new reality is far, far different than it was pre diagnosis. Your whole world changes. You're not the same person anymore, and your relationships change, too. They are either deeper and more significant, or the relationship simply doesn't matter (so much) at all anymore.
 
For me, I was terrified most that I wouldn't be around to raise my daughters until they at least graduated from high school. And then I looked at my pregnant sister in law, Nancy, and I was terrified that I'd never get to know Dylan and that he wouldn't remember me. I had the huge ginormous pleasure of being present for Dylan's birth. I had never seen a live birth before (my two daughters are adopted) and it was one of my most amazing things I've ever seen. Maybe THE most amazing thing. Please, Lord, I needed to get to know this little guy. And then... it was not finding love with anyone worthwhile again.
 




Flash forward almost three years. I am still here... And I am thriving. Granted, I'm thriving within y 80% former self. But I'll take that 80% any day.

...And if my oncologist, Dr A is to be believed (and he is!!!) and if what I read today and wrote about on www.myelomacrowd.org, I have much hope for the future. I WILL be around for my daughters' graduations-- college graduations, mind you. I will get to know my niece Beautiful Natalie. And Dylan is my little buddy and makes me laugh. And, love, yes, love.

I took two solid weeks of no cancer treatments. No Velcade, or Dex, or Thalidomide. Tomorrow, I start back up that regiment indefinitely. I will, however, advocate that every six months I take a full two week break. I am starting to feel "normal" again-- even though I'm fighting an awful cold. That said, for the past three days, I haven't needed to lie down horizontally for a bit because I feel "fuzzy and buzzy." I haven't had extreme chemo fatigue. My neuropathy in my feet at night, however, seems to be getting more intense. I simply keep using peppermint oil. It helps. I do Bikram yoga three times a week. It helps with circulation, stimulation, and just helping me keep my sanity. I got my massage this morning. And tomorrow I am back at Huntsman, learning to live within my limitations. It's ok, it really is.

So read on. Pray for cancer warriors. Pray for cancer treatments. Pray for cancer CURES. Because, unfortunately, the odds are that if cancer doesn't touch you, it will touch the person next to you, or across from you. Evil, dark, powerful, horrible cancer. But we can, AND WILL, kick cancer in the ass and spit on it when we're done. God willing.

Recent Improvement In Myeloma Outcomes Likely To Continue, According to MedPage Today

BY LIZZY SMITH

Last week, I had my two-year post auto stem cell transplant oncology visit. I hate getting restaged, I mean who does? Bone marrow biopsy (ouch!), 24-hour urine collection (gross), and labs. I wasn’t nervous at all for the doctor visit. I’ve been on a two-year maintenance plan of Velcade-Dex (weekly), and Thalidomide (daily) and I’ve felt as normal as I ever can. Therefore, I didn’t think that much has changed for me. And then I went into my exam room and waited for my doctor. At that moment, I wanted to puke, I was so nervous. Dr. A came in and it was great news– stringent complete remission. I wanted to jump up and dance. Before the visit, I knew it in my heart and gut, but actually hearing it is always exciting. And then, better yet, Dr. A said beautiful words: “I don’t want you to be nervous. There are so many new drugs and therapies in myeloma. You’ll be fine.” (I’m paraphrasing and summarizing a much longer discussion.) While I’m not about ready to get lazy and overly confident (I will never cease being terrified of cancer’s evil and horrible power), I am relieved and feeling rather… good.

And so it is that today I read this article in MedPage Today, which I think does a great job of describing some of the more promising therapies that are rather far along in the approval process. I learned a lot by reading, I think you will, too. More hope? I think yes.

Therapy for Myeloma Continues to Expand

Published: Nov 12, 2014
NEW YORK — Recent improvement in myeloma outcomes will likely continue into the foreseeable future, as new classes of agents become available, including immunotherapy, according to a review of therapeutic progress.

However, considerable room for improvement remains, particularly in terms of boosting long-term survival, said Sundar Jagannath, MD, of Mount Sinai Medical Center in New York City, at the Chemotherapy Foundation Symposium.

“There has been dramatic improvement in the overall life expectancy of patients with myeloma, but if you look at the [SEER] data, we still haven’t reached 50% survival at 5 years,” Jagannath stated. “At individual institutions where young, fit adults participate in clinical trials and are able to go through stem-cell transplantation, the median life expectancy has been increased to 7 years or longer.”

Despite the progress, myeloma remains a challenge because of a complex biology that has, to some extent, frustrated therapeutic development. Patients may have multiple clones at diagnosis and different clones emerge over time and are influenced by the treatment a patient receives, Jagannath said. The existence of multiple clones at diagnosis means that combination therapy will work better than a single agent will.

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