Dr Tildesley was on leave last week so we saw a Dr Duncan instead. This month my blood markers were all within the normal range indicating no problems with liver and kidney function or bone marrow. However there is some concern about my PSA, now up to 107 from 96 4 weeks ago. The concern is that the Radium is no longer effective, however I believe it is slowing down the rate of psa increase. Some specialists think that increasing psa is an indicator to cease radium treatment. After the 3rd infusion psa increased by around 50%. After the 4th infusion the increase was around 12%. So that must mean something. I was given the option to discontinue radium therapy if I wished. I asked him about Lutetium trials but he said i would not qualify. He suggested that we speak to Dr Yun about possible clinical trials and any other available treatments.
After we came home I phoned Dr Yun. He advised that as the radium was “holding back” the cancer to some extent it would be wise to continue the full course. It appears that the only other options available to me after that would be some form of chemotherapy. Before that can happen I need to be rid of all traces of radium.
I have mixed feelings about chemotherapy. Would I be sacrificing quality of life for a few extra months? How well would I tolerate side effects? I have heard good and bad stories about chemotherapy. It sounds like a bit of a lucky dip, but then such is life. Maybe I will give it a go. I can always pull out if I want to. At least I will have given it a try.
I have to say, I really don’t know what psa numbers really mean. It seems they bear no relationship to how I feel or what I can or can’t do. The fact that the rate of increase in psa is reducing makes me think that the Radium treatment is just now having a positive effect. I have read where patients have given up after 4 treatments. Maybe they gave up too soon. Anyway this is something we will discuss with the nuclear medical oncologist.
On the subject of how I feel, I have good days and bad days. That is too simplistic. “Good” days are days when I don’t feel nauseous or light headed, I can walk to the car and enjoy an outing of 3 to 4 hours, and I feel like eating. They are fairly rare and very unpredictable. “Fair” days are probably most common. On fair days I wake up feeling ok but not fancying breakfast so I have a protein drink. If I walk to the car (about 100 metres) I usually feel dizzy by the time I get there. I feel slightly nauseous with little appetite. I can enjoy doing cross stitch as I can do it while resting in bed.
“Crap” days are fairly common too. On crap days I can do a bit of cross stitch or watch tv. I feel nauseous and dizzy when I get up. I often need an afternoon nap even though i might have slept 12 hours, and my appetite is very poor. “Really crap” days are fortunately rare. On these days I feel impending doom, I can only pick at food and I begin to wish it could all be over. I lose interest in everything. It is really hard to describe and I don’t wish to sound morbid but it is what it is. Fortunately these days are rare, but when they coincide with medical appointments it is all I can do to get there and back. Without S to help me I wouldn’t be able to go. She drives, she helps me with my walker. She holds my hand and encourages me to keep going. She makes sure I am nourished.
It is impossible to predict what tomorrow will be like. All we can do is enjoy the good days, make the most of the fair days and endure the crap days. Don’t worry, life is still worth living and there is always hope that tomorrow will be a good day!
It has been quite a trying week for both of us.
First was the news that my psa has risen from 35 to 63.4, not what we were hoping for...
We saw Dr T on Tuesday at BCCA. I was very tired following the MRI on Monday. I had to lie on the examination bed so I wouldn’t faint. Dr T said that the MRI looked ok but he doesn’t have the complete report yet. We discussed the rising psa and he said it looks like perhaps the radium is not working, however he would like me to continue with the radium treatment. We discussed my fatigue, apparently radium does not usually cause such fatigue. Next it was up to the lab for more blood tests and an ecg (electro cardio gram). It was good to get home. The radium infusion was to have been on Wednesay but Dr T has rescheduled it for Friday. Dr T called next morning and said my electrolytes were out of whack and I am dehydrated, which would contribute to me feeling dizzy and faint. I had the option to go in for an infusion or re-hydrate according to his recommendations. I was already taking electrolytes every second day. He suggested l take Hydrolyte daily and double my water intake. After drinking more water and increasing the electrolytes I did feel better on Wednesday and we managed to go out for lunch. I even had a short walk around the shops so it was a good day.
Today we saw Dr Y who was his usual cheery self. I said I was concerned about the rising psa. He said that “sometimes when cancer cells are dying they give off a lot of psa, text book.” Then he said, “don’t give up yet, I will tell you when to give up….never!”
Tomorrow is the third radium infusion….We wait and see how it goes. Must say I have been better since increasing fluids and electrolytes though. Meanwhile the remaining snow is slowly melting away.
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.
Today I am preparing for my nuclear pet scan, psma scan also known as a Gallium scan. It involves being injected with a short acting radioactive substance that will show up any tumours very clearly. Last Friday I visited my GP for the earlier bone scan and CT scan results. The news was not good….
He told me I have significant lesions consistent with metastatic prostate cancer, now showing in my left pelvis, left humerus neck, L4 vertebra and my pubic bone. The psma scan will provide a clearer picture.
I have occasional mild pain in my left hip and lower back, but otherwise I feel great. S will be joining me in Australia in a few weeks, I really miss her even though I am seeing many long lost relatives. S and I will have a great time travelling and visiting friends and family, making the most of life!
My psa was 110 at last count. I will have another test in 3 weeks, hoping for a further decrease from an estimated max of 140. Will it ever reach zero? It doesn’t really matter, it is just a concept, and I will retain the name.
Well, my friends and supporters, the time has come to head off to the hospital. We have such a wonderful health care system in Australia, and I am so grateful for that.
I am hoping they will give me the disk as they did last time, I can have a good look and compare to my last results. My oncologist will see us on the 27th to discuss treatment options. There is still hope!! I cling to that!!
More to report later….
Apprehension is what I feel whenever I am heading into the unknown, especially if danger is involved, such as heading out to sea under sail. I know my ship is strong, I built her myself from steel. I know I am strong, I feel well with no symptoms of cancer. I have every reason to feel good, and yet this psa number overshadows my thoughts like a storm cloud.
My last psa test was on Saturday. 5 weeks ago it was almost 50. If it is still doubling it will be almost 100. Now that is a scary thought, but it is only a thought and it’s just a number. However, I still believe that the black salve is working and disrupting the cancer which makes this a false reading. My hope is that the number will level off or even fall as time goes by.
Nonetheless I am happy and blessed in my life. I am grateful for all that I have. God works in wondrous ways so I trust in Him. I will have a result before the weekend.