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1-877-937-7478
You Are NOT Alone
There is much to hope for....and the survivors here are happy to share their journey. Many have experienced a miracle with these little magic beads.
By calling The Survivor LIne you can be matched with FRIENDS for the journey - a survivor who had a similar diagnosis or someone who has already experienced treatment with Y-90 therapy. You'll be able to talk with someone who really understands your concerns--someone who has already traveled the path that you are about to take.
About YES
Discovering that you or a loved one has liver cancer or metastases to the liver from other cancers is extremely scary. The prognosis can be frightening and options can be few. When the liver is inoperable and there are few other choices, either Sir-Spheres or Theraspheres may be a possibility. Yttrium 90 (Y90) microspheres provide a novel way of treating some liver tumors. YES provides the opportunity for sharing, caring and learning to those who are interested in or are recovering from this procedure. Our programs include a survivor line , FRIENDS for the Journey , tele-group , monthly newsletter , list-serv , quarterly teleconferences , advocacy alerts, and treatment updates. These services are designed for cancer survivors and their loved ones. As life seems to lose control we offer support and hope through the feelings of helplessness, fear, and isolation by providing personal insight. No one should face their treatment decisions alone.
YES is a grassroots organization that was created out of the need to provide cancer patients with experience and insight which can increase the treatment possibilities available for those who have liver involvement. It is made up of survivors who have undergone selected internal radiation therapy (SIRT) for primary hepatocellular (liver) cancer or liver metastases (cancer that has spread to the liver) from other cancers. We are an organization dedicated to sharing timely and reliable information. We hope this sharing enables informed choices regarding the treatment and recovery from SIRT. We ultimately strive to enhance the quality of life for all of those affected by liver related tumors.
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Yttrium 90 Microspheres Education and Support
When The Improbable
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ABOUT THE LIVER
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COPING WITH CANCER
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GETTING ORGANIZED
COMING SOON: September Webinar
October 14, 2008 - 3:00 PM EST
Beating The Insurance Blues
Dear friends, "prayer partners" and positive healing energy givers,
The cancer world works in strange ways.
In June, I had the Yttrium 90 SirSpheres procedure for liver metastases from my pancreatic cancer, and shortly after I started the chemotherapy medication Xeloda. At the end of July, I began to have some problem side effects, so my oncology team told me to take a break for a while from the chemotherapy. The first thing that came to mind was “opportunity”' and Janet and I quickly called to see if we could get a vacation to Alaska on short notice. We had been saving money to do this, and cancer had always messed up our plans. All the cruise lines we called were fully booked for the rest of the season, but I called our wonderful travel agent, and 2 days later she came back with the last cabin available for the entire end of the season on Princess cruises, so we quickly threw together some plans, and made it on the cruise for the most wonderful time we have had in a long time. It was great, and daily we had unexpected pleasant surprises. For example, it rains over 180 inches a year in Ketchikan, so we had planned nothing for the day, but when we sailed in, the sun was shining--one of 5 days so far this year that the sun was out all day in Ketchikan. So we bargained for a seaplane ride, and took off on a 1 hour flight over the most beautiful Misty Fjords wilderness area. Attached is a picture of us on one of the lakes. If we had booked other things, we would have been stuck on land and inside on a rare beautiful day! We felt so very fortunate to have this mind, body, spirit-renewing time on such short notice.
Then on our return, we saw my interventional radiologist Dr. Andrew Kennedy on September 18th for a report on the 3 month results of my Yttrium 90 SirSpheres injection procedure. According to the MRI, 3 tumors have disappeared from visibility, and all other tumors have shrunk, and show NO suspicious activity! All tumors appear to be dying. Apart from some scar tissue formation, there seems to be no adverse effects of the injection! Great news!!!!!
Dr. Kennedy noted that the procedure had worked much better than he anticipated, and that usually with pancreatic cancer metastases to the liver, the tumors do not disappear as 3 of mine did, and that there is not usually such a great positive response! (I have sometimes joked that I always seem to be a little bit “off the curve” in my side effects and responses to treatments.) Dr. Kennedy was very pleased, and we were very pleased too.
In looking for a reason for this result, it seems that while I was on a clinical trial that did not work for me, and in the month after it but before my SirSpheres, my tumors had started to grow aggressively again, and thus became ripe for the SirSpheres procedure. So my tumors had many new blood vessels when they usually have few, and the treatment worked better than anyone could anticipate because of what would appear to be a “failure.”
Because this procedure treats only the liver, there is still the possibility of cancer "seeds" in my system, but my last CT scan showed no discernable spread elsewhere! We discussed what this means in terms of continuing chemotherapy with my oncologist at Duke, Dr. Herbert Hurwitz, last week, because it is important to prevent any possible "seeds" from growing. We decided that I would stay on a lower dose of the chemotherapy medication Xeloda for at least the next 6 months.
These results are exceptional, almost unheard of for pancreatic cancer, and we believe they are the results of your faithful support, continuing prayers and healing energy, along with very good medicine! We know this is a gift for the now, and we count ourselves to be fortunate to receive such a gift.
As we said to one person when she mentioned that her whole church was still praying for us every week for more than 3 years, please keep the prayers going, because as long as you are praying, Rich is still here to be prayed for.
We return the favor in the only way we can, with our thankfulness and prayers for you all too, and with our care to the best of our ability for those we know in similar situations.
So, I guess what we want to say is,
have hope, that sometimes things in the cancer world that look bad, may actually in some way turn out for our benefit. Let us keep hope and faith and love alive so the best that can be will come to be. Let's keep pointing our bodies, minds, and spirits in the direction of health and healing, and believe in our capacity to make the best of each moment we are given! Thanks to all of you for your courage, hope, hints, and inspiration.
Much love,
Rich and Janet Csarny
A Letter Of Hope
Rich Csarny