This is the first post on our hospice experience. I think I’ll be publishing these more frequently because this is a new experience, and events may occur more quickly.
The lady who handles enrollment for all of this hospice’s clients in the metropolitan area came Saturday morning. When she asked what else we might need today, I told her I would like the catheter replaced ASAP. Who would imagine it would be my first request? She sent an e-mail, and the on-duty nurse arrived at 4 pm – wonderful relief. Good service!
Monday morning the case nurse and the social worker came. Dan (the nurse) explained how we could use the liquid morphine he had brought us. They each asked a number of questions to find out how things were going. We learned we would see Dan (the nurse) once a week and more often if he was needed.
We have been using Biofreeze a couple of times in 24 hours to soften the rib cage muscle pain I have been dealing with more 2 years. It has worked pretty well since this summer. We have also been taking a dose of the morphine in the evening for the last two nights. Tuesday night I slept with out pain but not soundly; I wonder if the morphine is causing that. Another question for Dan.
This weekend Todd, Paula and toddler Emily will be coming from Calfornia for a visit.I am really looking forward to seeing all three of them!
Alas, the biopsy-free tumor sequencing results did not show that I would be a good candidate for Lynparza. However, to paraphrase a disclaimer in the report the chief forwarded to us, this test procedure is NOT a substitute for a tissue biopsy. At the moment I doubt that I would have been able to tolerate the twice daily dose of 400 mg.
Thus, it looks like the treatment part of our journey is finished. This is a very difficult situation to contemplate for reasons I’m sure long-time readers can easily imagine. This morning we enrolled in our local hospice organization.
Since the first of June my PSA has been doubling at a rate of about 100 days. With no treatment to arrest the growth of the cancer population, I anticipate that the PSA will continue to climb.
I feel myself slipping physically every week. My appetite has not returned; it is hard for me to relish my meals. This may have something have to do with a low level stomach pain I’ve had every since mid-July. Two summers ago a similar pain was traced to malignant nodules close to my lower spine. This summer, it’s not so clear.
And, it seems all I can do to cope with my plumbing difficulties.
We are trying to think philosophically about this turn of events. Heidi and I have had many more years to enjoy life, and each other, than we expected in the early years after my initial diagnosis. We rejoice in knowing that and are planning to enjoy the time we have left together.
The interest displayed by your comments have been a great source of comfort to us these last six years. With an endorsement from several readers who are neighbors in northern VA, I plan to continue this blog into the hospice experience for as long as I am able. I am not now planning to send these Hospice posts to my friends still battling with PCa because I suspect that such posts are not what other PCa patients want to read. Please e-mail me if you have already read quite enough and wish to be deleted from the distribution list.
We hope your fall season will be as pleasant as we intend ours to be.
Love, Heidi and Bob
For most of this summer I have thought that I’m running very short on treatment options. For some time the chief has been wanting me to step up from Taxotere to Jevtana – a successor chemotherapy drug. After all, it has been the chemotherapy with Taxotere that has helped to shrink the retroperitoneal nodules causing me so much trouble starting 2 years ago. Alas, I just can’t countenance any more chemo. I feel that all the treatments of the last 12 years have worn me completely down.
With chemo out, I knew the only drugs available today that might control my cancer are Lynparza and, possibly, Opdivo. While shown to be effective for PCa, neither of these drugs are currently approved for it. So, pathological evidence of a tumor from a biopsy has been needed to justify their off-label use. For Lynparza that evidence must show the presence of mutant genes such as BRCA1/2 and defects in the DNA repair genes of the cancer cells in order to anticipate a high response.
An early August CT scan showed that neither the growth of the retroperitoneal nodules nor the ones on my adrenal glands yet look malignant to the radiologist. Since my PSA has now risen into the high 20s, such growth may yet be coming. Would I still have the SE&S to deal with another biopsy at that undetermined time?
In the midst of that gloom another rabbit popped out of the chief’s lab coat. I had written him an e-mail saying I just couldn’t contemplate more chemo and asked what might we do next. Last week he sent me a test order and a kit for a blood draw that I should then send to Guardant Health in Redwood City. I checked out their website. Guardant Health specializes in sequencing of tumors found in the blood stream! We got the samples drawn yesterday afternoon and put the package in the hands of a Fedex driver by 3 pm that day. Guardant states they expect to provide results in about two weeks. If I have gene mutants like BRCA1/2, as well as defects in the cancer cell repair genes, I may have another chance to achieve long term PCa management with Lynparza.
At this point in late August I’m happy that my appetite is returning. I’m able to enjoy good coffee and a smooth cabernet sauvignon once again! We had a wonderful time with our young adults and their children during their visits this month.
Bob and Heidi with our English and northern Virginia grandchildren