We arrived home safely tonight right around 5 pm. It was a long trip, and we are glad to be home.
Dr. Leibowitz and his team were very kind, very thorough and spent a lot of time with us. He has changed the protocol quite a bit from what Leland was on when we arrived there, added several new medications, both oral and injections in addition to the chemo infusions. We also saw Dr. Leibowitz's colleague, Dr. Eshagian, a younger oncologist working as part of the team. Dr. Eshagian asked us if anyone had told us that Leland's initial diagnosis meant that he had about 18 months to live at that time, and that Dr. Chen had done well to keep him going as well as he has for over two years. He also said there is more that needs to be done, and they both told us they have every reason to believe this new treatment will put him into a more durable remission. Dr. Leibowitz has been doing this for many years, with the bulk of his patients being prostate cancer victims.
We will be changing from the clinic in Seattle to an Ocologist in Yakima for the local part of the treatment, a Dr. who works with Dr. Leibowitz. We hate to leave the Seattle Clinic, they have been great, but both of us think we need to move on, and Yakima is much closer for the weekly trips. We will still need to go back to LA next month for assessment and more testing and treatment.
We feel a little overwhelmed with all the changes, and have a lot of work to do to get it all organized, but they were very helpful with that at the clinic, and have made it easier with their system of patient care.
We called Ed and Dana on Friday afternoon on our way back and asked if they would be home on Sabbath afternoon; they graciously invited us for dinner and to spend the night. We met some of their friends and had a very enjoyable time with them. What a nice change it was from driving all day long and a hotel! Our drive today was shorter, and we were able to stop in Redmond for an hour or so to visit with Nick, Jan and Vonnie. It is good to be home, in the peace and quiet and off those California Freeways!
Sunday, June 15, 2014
Thursday, June 5, 2014
2014 June 5 4th Treatment Finished
After Leland's third treatment on the 29th of May, some adjustments were made in his medications and the time schedule, to alleviate the nausea which was nearly constant. He had a much better week, with more energy and almost no nausea at all. Mike Payne drove us up; Thank you Mike!
Treatment # 4 went well, the blood work looks fairly good, medications were tweaked a little more; PSA and CTCs were drawn again. Dr. Sweet called us today; Psa had gone down from 107.6 to 73-a very nice drop and a good sign the chemo is working again. CTC results will take several more days.
We visited one of the newly legal medical dispensaries to buy some CBD oil, an interesting experience. Dr. Sweet believes it can only help, so we are trying it.
In the meantime between my own PT appointments and Leland's appointments,and attempting to get our yard in some kind of shape again, I have been reading a new book by Dr. Edward Friedman regarding hormone therapy, cancer and Alzheimer's. I contacted the author just this morning by e-mail and asked him if he could recommend any doctors practicing by his protocols. He gave me a name and phone number within the hour, I called the office, spoke with a patient coordinator there, and Dr. Leibowitz called us tonight. We had been thinking to finish the chemo, go for another opinion and have the two doctors consult. Dr. Leibowitz wants to see us next week! (He is the pioneer of the current chemo regimen being used by Dr. Chen, Low Dose Taxotere, Carboplatin and Emcyt. He began using it in the 90s with very good success. It was finally approved by the FDA in 2004) Dr. Leibowitz practices in Los Angeles, so we are busily planning our trip, Leland mapping it out, I working on medical forms and records which will be needed for the visit. We also have to have his original biopsy slides sent there, for review at Johns Hopkins.
He will have his chemo infusion for next week down there, the next two in Renton, and a week off. Then one more in LA and the rest of them up here. Then the treatment will change for a few months, before changing again. Dr. Friedman emailed me that the death rate for patients nationwide with Leland's level of disease is 90% within 5 years. Dr. Liebowitz has 70% of his patients still alive and doing well at the 5 year mark, quite a difference!
I am so thankful he is feeling well enough to do this. We will be driving. Leland has figured the trip will be about 15-16 hours, not including breaks every couple of hours. I feel a little overwhelmed, as I said, I did not expect this so soon. But Dr. Leibowitz had compelling reasons why we should come sooner rather than later.
Delmarie very kindly sowed my Zinnia seeds for the back yard and planters, then sprouted them. To top all that off, she also came over and helped me get them in the ground and in the planters. Would never have happened without her- thank you so much Del, and Chuck too for helping with some other chores, like shoveling barkdust out of the pickup and other things too.
This spring has been especially challenging with Leland sick, and my arm still recovering, not to mention that we are hardly ever home to get things done. When we are, there is so much to get caught up on, it is hard to get outside. My shoulder is improving a little every week, I have graduated from just passive exercises to more muscle building which seems like a real milestone to me. The weight is only 1# at home but it is a start. In the gym with my therapist, I was doing 5# for some of it, but he does not want me doing that without his supervision. I felt pretty wimpy working out in the gym beside a guy who was lifting 100# weights!
Thank you for the caring emails some of you sent, I intended to answer all of them personally, please know they were appreciated so much. I will blog again when we return home from the LA trip. I believe this is an answer to our prayers for guidance and open doors for more advanced treatment, so we have peace, and will do the best we can to do our part.
Treatment # 4 went well, the blood work looks fairly good, medications were tweaked a little more; PSA and CTCs were drawn again. Dr. Sweet called us today; Psa had gone down from 107.6 to 73-a very nice drop and a good sign the chemo is working again. CTC results will take several more days.
We visited one of the newly legal medical dispensaries to buy some CBD oil, an interesting experience. Dr. Sweet believes it can only help, so we are trying it.
In the meantime between my own PT appointments and Leland's appointments,and attempting to get our yard in some kind of shape again, I have been reading a new book by Dr. Edward Friedman regarding hormone therapy, cancer and Alzheimer's. I contacted the author just this morning by e-mail and asked him if he could recommend any doctors practicing by his protocols. He gave me a name and phone number within the hour, I called the office, spoke with a patient coordinator there, and Dr. Leibowitz called us tonight. We had been thinking to finish the chemo, go for another opinion and have the two doctors consult. Dr. Leibowitz wants to see us next week! (He is the pioneer of the current chemo regimen being used by Dr. Chen, Low Dose Taxotere, Carboplatin and Emcyt. He began using it in the 90s with very good success. It was finally approved by the FDA in 2004) Dr. Leibowitz practices in Los Angeles, so we are busily planning our trip, Leland mapping it out, I working on medical forms and records which will be needed for the visit. We also have to have his original biopsy slides sent there, for review at Johns Hopkins.
He will have his chemo infusion for next week down there, the next two in Renton, and a week off. Then one more in LA and the rest of them up here. Then the treatment will change for a few months, before changing again. Dr. Friedman emailed me that the death rate for patients nationwide with Leland's level of disease is 90% within 5 years. Dr. Liebowitz has 70% of his patients still alive and doing well at the 5 year mark, quite a difference!
I am so thankful he is feeling well enough to do this. We will be driving. Leland has figured the trip will be about 15-16 hours, not including breaks every couple of hours. I feel a little overwhelmed, as I said, I did not expect this so soon. But Dr. Leibowitz had compelling reasons why we should come sooner rather than later.
Delmarie very kindly sowed my Zinnia seeds for the back yard and planters, then sprouted them. To top all that off, she also came over and helped me get them in the ground and in the planters. Would never have happened without her- thank you so much Del, and Chuck too for helping with some other chores, like shoveling barkdust out of the pickup and other things too.
This spring has been especially challenging with Leland sick, and my arm still recovering, not to mention that we are hardly ever home to get things done. When we are, there is so much to get caught up on, it is hard to get outside. My shoulder is improving a little every week, I have graduated from just passive exercises to more muscle building which seems like a real milestone to me. The weight is only 1# at home but it is a start. In the gym with my therapist, I was doing 5# for some of it, but he does not want me doing that without his supervision. I felt pretty wimpy working out in the gym beside a guy who was lifting 100# weights!
Thank you for the caring emails some of you sent, I intended to answer all of them personally, please know they were appreciated so much. I will blog again when we return home from the LA trip. I believe this is an answer to our prayers for guidance and open doors for more advanced treatment, so we have peace, and will do the best we can to do our part.
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