We saw Dr Y today and I had yet another Zoladex injection. Yesterday was my last radium infusion. PSA was up to 179 from 107 4 weeks ago, so that is a concern. Basically it means the radium is not working any more. The recent CT scan shows no soft tissue metastases and that is a great relief. There are however, signs of skeletal advancement but that was expected. So far no signs of fractures and I am being very careful not to slip or fall as a hip fracture would be disastrous.
All the doctors agree that chemotherapy would be the next option. They are looking at commencing treatment (Docetaxel) in about 5 to 6 weeks. I still feel life is worth living so I have decided to give it a go and see what happens. I can always quit if I want to. I plan to write to Dr W in Australia and ask his advice as returning to Australia is still an option. Meanwhile I have increased my prednisone and I have noticed some improvement in how I feel. Better to be fat than miserable.
Next week I will be back on Zytiga for 4 weeks and it will be interesting to see if any effect on PSA. It is just a waiting game, meanwhile we enjoy the good days and endure the bad ones. I still enjoy and benefit from my needlework, and of course there is always Netflix!
Got the news last Wednesday…psa is up to 16.7 from 10.2 a month ago. I saw my oncologist today and he said he is disappointed. Me too, I said. It seems likely that the Zytiga is no longer working. We will persist for another month and if still rising I will have some scans and possibly back to the radiation oncologist. I am still recovering from kidney stones and it has not been the best couple of weeks. I also had my 3 monthly Zoladex injection. The nurse said she hates doing Zoladex injections. It is a huge needle that injects a pellet into my abdomen. What about me, I said!
I am still trying to figure out how I feel about it all. Chemo was mentioned and dismissed. Dr Yun also mentioned a radiation treatment involving infusion of radioactive material into the blood stream (Xofigo?) I did some research and it seems BC Cancer Agency is planning a trial next year and I may qualify. Preliminary tests have shown great promise. A radioactive isotope targets cancer cells and destroys them while leaving healthy cells alone. There is still some hope. Google “Lutetium PSMA” for more information.
Next week I will have another bone scan. At least it will give us a picture of where the bone metastases are.
There are things I would still like to see and do. I need to prioritize because there is no way I can do them all. Most important at this time is to finish 3 tapestries, maybe 4 or 5 if time permits. Physical activity tires me quickly but needlework calms and distracts me.
I need to downsize as well. I plan to edit my many hours of video into something watchable. I want to post some of my life on YouTube, maybe someone will enjoy it. A video review of my life for my funeral is another project. I am fortunate that I have time to prepare. I am not afraid to die. What concerns me is that I will miss out on seeing some exciting things, such as great grandkids. Sometimes I feel as though it is up to me to make people feel ok when the subject of cancer comes up. I am still me and I will be til the end. Having cancer sorts out the real friends and I am blessed that I have Stefanie, family and friends who will stand by me. I thank God for such people.
It has not been the best of times, and possibly not the worst of times, however it could be better……
S and I are preparing to return to our home in Canada. In fact we are due to fly out next week, and we are really looking forward to reconnecting with our friends and S’s family. It all sounds good, however it is not so good. Today my GP advises my latest psa is 180, up from 140 just 27 days ago. S gave me my first Xgeva injection a few days prior to the blood test. The plan was to have the blood test first but circumstances got in the way. The psa rise could be due to the Xgeva injection??? Who knows? There doesn’t seem to be much information around about this, just dire warnings about necrosis of the jaw. With that in mind I visited a local dentist to have some work done. I was quoted around $500, but after an hour and a half in the chair the bill was closer to $1000. However they did a good job and I feel confident that my teeth and gums are in good condition, which will reduce the risk of necrosis. I cannot have any dental surgery while I am on Xgeva. I am to have injections every 4 weeks until I see my Oncologist in February 2018.
My doctors have been very helpful, providing me with 6 months of necessary medications. Plans for leaving were going well until yesterday when I woke up with severe pain in my hip, radiating to my back and knees. I could barely walk and I was worried that perhaps I had a fracture. So it was off to the ED at the Mater Hospital. After x-rays the diagnosis was no fracture, which was a relief. I was given stronger pain medication and sent home. The doctor advised me that the pain was probably due to cancer in the femoral head and acetabulum (the hip socket) rubbing together. For the record I had been driving a manual shift car and had driven 2 long trips a few days prior to the onset of pain. I feel sure that this aggravated my hip and caused pain.
Last night, dosed up on pain medication as prescribed, I slept well and woke feeling much less pain. The writing is on the wall. I need to be much more careful and take steps to prevent subsequent damage. I am trying out a 3 wheel walking frame with brakes. It will help keep me stable and hopefully warn others that I have a problem.
As I write, I am still in shock at hearing that my psa is up to 180. Hopefully it is just a blip. I will inform my medical oncologist of all recent developments via email, and we will see what happens next. We still intend to fly out next week as planned. Life is for living, not hanging around waiting for medical verdicts. We have done enough of that in the past 4 months. A cruise to Alaska is a distinct possibility at this time if we can get a last minute booking. Holland America Cruises, here we come!!
My sincere appreciation to all my blog mates with gratitude for your support.
This morning I received the long awaited phone call. “Your psa is 107”. I had so much hoped for a much lower number than last time (48.6), or at least a levelling off. I was even prepared for at worst a doubling (97.2) but 107 came as quite a shock. S and I were getting ready to go out to lunch with some friends. We had a great lunch, fresh Halibut at a great venue, right near Vancouver airport. Of course we could not say too much as we are still trying to come to terms with what this number actually means……
So, what does it mean? At first sight it would appear to indicate that the cancer cells are multiplying at an increasing rate. A closer look at the graph shows that there was a decrease following radiotherapy and then a sudden rise coinciding with taking black salve internally in October 2016. I am now taking a powder form of black salve in capsules. To be more correct it is a mixture of bloodroot powder, chaparral powder, graviola powder and burdock root powder. None of which would cause me any harm, but should disrupt cancer cells.
Prostate cancer is supposed to be slow growing, so maybe it is reasonable to assume it will be slow to die as well. (It works for me!). I can theorise about it until the cows come home, but at the end of the day only definitive tests by my oncologist will reveal the true story. I plan therefore to return to Australia where I can have testing and receive treatment.
Tonight, S will give me a Zoladex injection and I will have another psa test in 3 weeks to see if it is making a difference. My sincere thanks go to Dr JM for his advice. (I am so grateful that you cared enough to give your opinion.)
Maybe some reader is wondering about how I am feeling. I feel disappointed. I feel frustrated that I will have to leave my beloved S, even if it only for a short time. I hope she will join me in Australia at a later date. I feel there are so many things that I have not done and may not be able to do, yet at the same time I am grateful for the things I have done, the people I have met and the opportunity to spend real quality time with the woman I love. I feel hopeful that my treatment will be successful and that we will return soon to Canada in time to enjoy the beautiful weather that is just now coming with Spring. I thank all of my readers for your prayers, your good wishes and your support. God bless all of you. Les.