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.
Thursday 2 August latest psa reading is 14.7. 4 weeks ago it was 19.7 and up until now it has consistently halved each month, so this reading, around 75% is a little disappointing. The good news though is that it is less than last time so I will take that gratefully.
Meanwhile I am continuing with the Zytiga and Prednisone with no apparent side effects apart from growing pert little breasts. My testosterone is virtually undetectable at less than 0.1. The good thing about that is that it starves the tumours and slows down any growth. The bad is that it takes away all sexual urges, then again maybe that is not so bad as nothing works down there anyway! My rib still aches at times and I take Tylenol in addition to the Fentanyl patches every 3 days. I notice the rib pain more on the third day.
The ostomy is still troublesome at times. It is always there except for a few hours every 4-6 days when I remove it to replace it. I like to just relax and give the skin some air for a while. I know it is not polite conversation to talk about one’s bowel habits, but when it is right in front of you it is hard to ignore. Most times when the bag is removed I can collect any “output” in a tissue and then put it in a plastic bag. Last time, this was working quite well until suddenly there was a lot of gas, causing S to leave the room and then an increase in “output” causing me to hastily fit a new skin barrier and pouch. Luckily I got it on in time and didn’t make a mess, however the new bag quickly filled up. Should have waited, but that is ostomy care. Full of surprises!
However, life is good and I am glad to be alive. I have been following the Golden Globe Race and have found a program that will allow me to virtually enter the race. Haven’t tried it yet so that is a subject for another blog at a later date.
It is two months since I started over after my disastrous oversight. 16,000 stitches down and only 12,000 to go plus a bit of detail work. I am still enjoying the task and life is good!