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!
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!
Infusion no 4
PSA has risen to 94, up from 63 the previous month. We saw Dr T a few days later. At least I didn’t have to lie on the couch this time so that is an improvement. It seems the daily dose of electrolytes is paying off as I feel much better than I did last month. We even managed to meet some friends for lunch afterwards.
Dr T didn’t have a lot to say, however he was happy about the blood markers and it seems my bone marrow is ok. There was some discussion about the possibility of soft tissue metastases so a CT scan has been arranged at the end of April. I have no symptoms that would indicate any problem so it is just a precaution.
Two days later it was back to Vancouver for the radium infusion. I was feeling pretty good that day. The dreaded radioactive diahrea hit 5 days later followed by the usual set of days of not feeling too bright.
Hopefully this will improve as time goes on and then it will be round 5. It seems I am developing a tolerance for the radium.
Meanwhile, I saw a Dermatologist about some moles on my back. They were ok, however he found a lesion on my forearm that looked suspicious so he did a biopsy. It came back as a precancerous squamous cell carcinoma. He prescribed a chemotherapy cream that I apply twice a day for the next 8 weeks.
Otherwise all is well and we are looking forward to enjoying Spring and Summer.
I have just finished reading one of the best novels I have ever read. The Identity Check, by Ken Merrell was downloaded from free-ebooks.net where I am a VIP member.
I read this book to my wife, S over several days and we both enjoyed it immensely. The plot involves an inept but vicious wannabe Mafioso who moves to Las Vegas to run a credit card scam. The FBI are on his trail but not getting close to an arrest. The smartest people in town are a group of homeless vagrants who figure out what is going on and team up with a young man on the run from the law to bring the villain down.
There are many twists, turns and surprises as the story unfolds. There were events that had us both fearing the worst, and in between, scenes that had us in stitches. This book has it all, a sex scene that is hilariously unimaginable, characters with rare talents, car chases, acts of vengeance, and justice being seen to be done. We especially loved Smitty and the junk yard dogs!
We liked the way homeless people were portrayed as real human beings. They are the real heroes of the story, helping the main character, Mitch, to clear his name and restore his life. The story has much to say about love, loyalty, forgiveness and acceptance, not taking people at face value. We thoroughly enjoyed the read. It would make a great movie….pay attention Hollywood!
Today I turn 72! Actually I turned 72 yesterday because I was born on the other side of the International Date Line in Australia.
Today is not a day to be thinking about cancer and psa, blood work and radium223, it is a day to CELEBRATE!!
Therefore my darling S and I are going out for an intimate dinner this evening where I may even consume a small amount of alcohol and a large amount of dessert!
Actually I have felt rather well the last few days…..
I believe I will make it to 73!!
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.
My second Radium 223 infusion was just 5 days ago and right now I am feeling rather crappy, tired and nauseated. Is the cure worse than the disease? It isn’t even a cure, just buys a bit more time. Sometimes I have to wonder if it is worth the trouble. I had 5 medical appointments last week, I feel like a voodoo doll.
At the beginning Dr T, radiation oncologist said that R223 would probably not reduce psa but should prevent it from rising too much. The good news is that the psa has dropped dramatically from 46 to 35. Funnily enough I felt better when my psa was over 2000! Dr T also said it is normal to feel pain after the infusion. He was right about that. After the first infusion I had a small slip as I began to get out of the bath. Next day the pain in my back was almost unbearable despite the Fentanyl patch. It took 4 oxycodone a day for 4 days to control the pain and then it just stopped. I told Dr T and he wants me to have an MRI sometime soon.
Just as I was starting to feel better it was time for the second infusion. Two days later the pain came in my sternum and ribs. Fortunately it only lasted one day and responded well to oxycodone. So, I plan to continue to endure this treatment for the time being in the hope that things will improve.
Up at 6.0am this morning for the slow wet drive into Vancouver in the dark. I don’t think the sun came up at all today and it’s still raining.
We saw Dr T. and what a change! Whenever we have seen him before he was abrupt, clinical and in a hurry to finish. Today he was totally opposite. The results. The bone scan shows more activity as expected. PSA is up to 20.2, not bad considering.
He discussed 2 options, chemo and radium 223. Radium 223 (Xofigo) is 6 injections of a radioactive isotope that finds rapidly dividing bone cells and kills them. It is not a cure but can give an average additional 3 to 4 months of quality life compared to doing nothing. The injections are 4 weeks apart, cost $5000 each and are flown in from Europe. I would be radioactive, especially Dumpy would be, but not a danger to others and I quote “providing it is not swallowed”!!
The other treatment, chemo, he said would have similar effectiveness re survival time, however, he minimised the side effects. He said the cancer is confined to bone, though if it metastasizes to soft tissue (liver or lymph nodes) radium 223 can’t be used. I asked him what would he do if it was him? He said he would have the radium 223 and then he could have chemo later if need be, but not the other way round. Sounds reasonable to me.
He also discussed giving a single shot of radiation to treat a spot on one rib that gets painful at times. Next it was off to x-ray. They took about 15 x-rays of my ribs, hips and legs. I will see Dr Y. next week and hopefully he will show us the scans and x rays.
Meanwhile I am still feeling reasonably well apart from some blood pressure issues, very high, due to Zytiga. I get tired very quickly and I don’t seem to have the energy I had in the summer. I will have to stop Zytiga before starting the radium223, so hopefully the blood pressure will improve. So, another decision to be made re treatment choices. I suspect I will go with the Radium223.
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.