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.
There is no easy way to say it…after 8 months on Zytiga my psa has stopped falling at 9.2 and has now risen to 10.2 in 5 weeks. Does this mean Zytiga has failed? I don’t know to be honest and I must admit it scares me to think what might come next. I have been feeling pain in my ribs and discomfort in my sternum lately despite the Fentanyl. I take Tylenol occasionally when needed, otherwise I still feel well. I am still gaining weight, now 87 kgs. A little more than ideal. I walked nearly a kilometre today with my trusty rollator. I saw Dr Ho this morning and he said that it is possible the psa will continue to fluctuate around the current level and it does not necessarily mean that the treatment has failed. I hope he is right. If the next psa rises significantly I will probably have another bone scan. Chemotherapy doesn’t appeal to me, however I have read that some people have had good results without too many bad side effects, so never say never. Each month when I go for a checkup I see the people receiving chemotherapy sitting in their armchairs and I wonder what it must be like for them. I am reminded that I am not the only victim of cancer and that really I have had it pretty good compared to some people. I have survived 10 years from diagnosis and I have lived more than 70 years. I don’t have to worry about losing my marbles in later life. My next psa is in 3 weeks. Can’t wait to see the score!
It’s the end of yet another month. This month of August 2018 is special in a couple of ways. Firstly it marks 10 years of survival from my initial diagnosis when my psa was 12. Secondly my latest psa has finally dipped below 10, coming in at 9.2, so I am pretty pleased with that. Full credit for the improvement in my psa must go to what I call The Awesome Four. Four little (not so little) Zytiga tablets ($50 each if I had to pay for them!) that I take every morning followed by prednisone.
I feel good. I am fit and strong, walking well (with the aid of my trusty walker). The worst side effect is that my skin is becoming very thin and I bruise and bleed easily. However, that is a small price to pay for the resulting psa drop. What does lower psa actually mean though? It means that the cancer tumours will be less active and less likely to spread. Unfortunately it does not mean there will be less cancer, so I still need to be careful to avoid falls or heavy loads on my legs.
The cross stitch is progressing well. I am quite pleased with it and only a few thousand stitches to go and then the detailing and rigging to finish. I need to consider how I am going to frame the finished work and I have a few ideas. S has a love for the Waratah, an Australian native flower of striking beauty (just like her!) and that will be the subject of my next project.
Meanwhile life goes on. Mr Dumpy (colostomy bag) has been up to his usual tricks. I really need to get my diet under control. Multigrain bread and carbonated drinks cause havoc. Today, while out shopping, I suddenly realised that Mr Dumpy had filled almost to bursting point with gas. I was driving and so could not relieve the pressure, an operation that requires me to get out of the car. (It stinks!) I told S, “One more fart and it’s all over!” However, it held out until we got home.
Sadly, my Mum passed away a few weeks ago. She was 95 and had lived a full and enjoyable life. She said she was ready to go and after a short illness she left this world in her sleep. Unfortunately I was not able to travel to Australia to see her or attend her funeral. A generous relative held her phone up for the entire service, allowing us to watch live. The wonders of modern technology!!
So this month has been a mixture of good and not so good. Life goes on and so do we.