It has been a frustrating 2 weeks. We got all the required paperwork into the foundation, and I called a couple of days later to find out how long it would be before we know if we have been accepted for a grant. Was told to expect at least another two weeks. So that will be a whole month since the prescription has been given.
Yesterday, Leland went off to help to be part of a moving crew for some friends. I stayed home to work on medical stuff, and ended up writing an e-mail to the clinic administrator copied to the rest of our caregivers there detailing the difficulty we are having. I got a call within a few minutes from the administrator and one from the other Oncologist a little later as Dr. Chen is on vacation. He ordered more tests to be done today, which Leland went and did this am. We got the results this afternoon. In the two weeks since the last test, the PSA has risen to 41 from 24. Higher than at diagnosis. I had asked the Dr. why he could not be put on one of the older meds which are effective and affordable. He said we would test the PSA first, and then decide what to do.
This system needs to be changed! Sending a cancer patient out the door with an unaffordable prescription which takes over a month to obtain allowing the disease to get a better foot hold in the meantime is not acceptable. The adminstrator told me there are too many insurance plans to keep track of what all of them do. At least they did respond to my e-mail when the phone calls did not generate any help. We are fully insured with Medicare, a supplemental policy and part D. But this prescription through our insurance has copayments of 2,703 dollars per month until we reach the doughnut hole, then they jump to 3,403. When we get out of that, the co pay is only 360. All these are per month for 30 pills. Unbelievable.
We went to The Dalles today to the VA Administration to see if there are any medical benefits he qualifies for, so that will be more paperwork to fill out next week. It was a lovely day however, and we took advantage of the sunshine to take a walk by the river while we were there, a nice change from walking on our muddy roads under the pines.
Friday, February 15, 2013
Sunday, February 3, 2013
2013 Febuary 3 A Bend in the Road?
The appointment with Dr Yu, Medical Oncologist Specializing in Prostate Cancer, with whom we consulted for a second opinion this last week was very interesting. The Seattle Cancer Alliance is a huge complex affiliated with the University of Washington and the Fred Hutchinson Cancer Center. It is situated right in downtown Seattle overlooking part of Lake Union. The traffic was awful, and we were really grateful for the GPS and its ability to "recalculate" when a turn is missed.
They had collected all of Leland's records and sent for his pathology slides which one of their expert pathologists reviewed. Dr Yu and his assistant opined it is possible -but rare- that Leland is not responding to the Hormone therapy and based on the next set of lab work would recommend he start treatment with a new drug called Zytiga. They were very professional, had obviously done their homework, and answered all our questions.
We then went to the Seattle Cancer Treatment Center and they drew his blood for this month's tests and flushed his port. We then saw Dr. Chen the next morning and before we told him we had gone to see Dr. Yu, he proceeded to recommend the exact same treatment. He had the advantage of having the latest blood work of course, which further clarified the issues, but we were reassured that our clinic is on top of things and has the advantage of the Naturopathic Oncologists, which the other clinic does not.
Leland's PSA continued to climb-from 7.6 when chemo was finished to 17.7 on the third of January and now to 24, which is 2 points higher than when he was diagnosed. This should not be happening so soon on the Lupron shots, so clearly a good share of this cancer is not responding. Also his Alkaline Phosphatase is very high in the last couple of months, which is an indicator of bone cancer activity. Not what we wanted to hear.
Dr. Chen prescribed Zytiga, and said we would have to obtain it from a specialized pharmacy, and started the ball rolling. Then one of the office girls came in with some forms to be signed and told us the co-payments are very high, five thousand dollars a month for medicare part D patients! Really?? She also told us the company which manufactures it does have some programs and some non-profits who help patients afford this, and when we got home Friday night, there was a message on the answering machine from a rep there. Monday morning we will call and see what they have to offer.
Zytiga works by supppressing the testosterone made by the adrenal glands when Lupron shuts down the main production by the testicles. It must be taken with low dose steroids to prevent some very unpleasant side effects, and in clinical trials was shown to extend life four to five months over placebo. These are mean numbers, averaged out over the entire group of men. Which does not seem that impressive to me, but it also improved quality of life for nearly everyone on it, so that is worth a great deal.
Leland still continues to feel well in spite of all this; his courage is good and his trust in God allows him to be calm and peaceful even in the face of less than encouraging news.
I will conclude with these words from Jesus Calling page 25:
"My Peace is the treasure of treasures; the pearl of great price . It is an exquisitely costly gift, both for the Giver and the receiver. I purchased this Peace for you with My blood. You receive this gift by trusting Me in the midst of life's storms. If you have the world's peace-everything going your way-you don't seek My unfathomable Peace. Thank Me when things do not go your way, because spiritual blessings come wrapped in trials. Adverse circumstances are normal in a fallen world. Expect them each day. Rejoice in the face of hardship for I have overcome the world.
Matt.13:46; James 1:2; John 16:33
They had collected all of Leland's records and sent for his pathology slides which one of their expert pathologists reviewed. Dr Yu and his assistant opined it is possible -but rare- that Leland is not responding to the Hormone therapy and based on the next set of lab work would recommend he start treatment with a new drug called Zytiga. They were very professional, had obviously done their homework, and answered all our questions.
We then went to the Seattle Cancer Treatment Center and they drew his blood for this month's tests and flushed his port. We then saw Dr. Chen the next morning and before we told him we had gone to see Dr. Yu, he proceeded to recommend the exact same treatment. He had the advantage of having the latest blood work of course, which further clarified the issues, but we were reassured that our clinic is on top of things and has the advantage of the Naturopathic Oncologists, which the other clinic does not.
Leland's PSA continued to climb-from 7.6 when chemo was finished to 17.7 on the third of January and now to 24, which is 2 points higher than when he was diagnosed. This should not be happening so soon on the Lupron shots, so clearly a good share of this cancer is not responding. Also his Alkaline Phosphatase is very high in the last couple of months, which is an indicator of bone cancer activity. Not what we wanted to hear.
Dr. Chen prescribed Zytiga, and said we would have to obtain it from a specialized pharmacy, and started the ball rolling. Then one of the office girls came in with some forms to be signed and told us the co-payments are very high, five thousand dollars a month for medicare part D patients! Really?? She also told us the company which manufactures it does have some programs and some non-profits who help patients afford this, and when we got home Friday night, there was a message on the answering machine from a rep there. Monday morning we will call and see what they have to offer.
Zytiga works by supppressing the testosterone made by the adrenal glands when Lupron shuts down the main production by the testicles. It must be taken with low dose steroids to prevent some very unpleasant side effects, and in clinical trials was shown to extend life four to five months over placebo. These are mean numbers, averaged out over the entire group of men. Which does not seem that impressive to me, but it also improved quality of life for nearly everyone on it, so that is worth a great deal.
Leland still continues to feel well in spite of all this; his courage is good and his trust in God allows him to be calm and peaceful even in the face of less than encouraging news.
I will conclude with these words from Jesus Calling page 25:
"My Peace is the treasure of treasures; the pearl of great price . It is an exquisitely costly gift, both for the Giver and the receiver. I purchased this Peace for you with My blood. You receive this gift by trusting Me in the midst of life's storms. If you have the world's peace-everything going your way-you don't seek My unfathomable Peace. Thank Me when things do not go your way, because spiritual blessings come wrapped in trials. Adverse circumstances are normal in a fallen world. Expect them each day. Rejoice in the face of hardship for I have overcome the world.
Matt.13:46; James 1:2; John 16:33
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