Chemo number 2 has been delivered and this time I feel so weak and lethargic, out of sorts. It is hard to get interested in anything for long and when I get up I feel wobbly and shaky. A couple of nights ago I got up to go to the bathroom and felt very faint. As I staggered back to bed I passed out, banging a rib on furniture as I fell. I have a sore rib as well as the chemo effects. And I took some skin off. My mouth is still very dry and I have bad breath due to the damage to my mucous membranes. However this will soon pass and I expect to feel better in a few days. Latest psa is 290, up by 48 from last time. This could be due to dying cancer cells giving off psa. Anyway I will hang onto that for now. I fancied Chinese today so Stefanie brought home some takeaway which I really enjoyed. So the plan for now is to continue the treatments and hope for a good result.
Yesterday was the first installment of my chemotherapy regime. Besides the usual prednisone I was prescribed dexamethasone for the day before, during and after. My psa had dropped from 247 to 242 in 2 weeks. A pleasant surprise.
We arrived early and I was seated in a comfortable arm chair for the one hour infusion. The nurse painlessly inserted the cannula, hooked up the IV machine and the taxotere commenced to flow. There was no sensation of any kind and the hour passed quickly thanks to an interesting book.
I did not sleep well last night and was wide awake at 3.30. This morning I had a slight headache and a sore back thanks to overdoing it while lifting a box of groceries.
All in all it was not an unpleasant experience and it remains to be seen what side effects are likely to present themselves. Three weeks from now we will be doing it again. 6 sessions are planned at this stage. I have read of some promising outcomes from this treatment, so here’s hoping.
Greetings to my fellow sufferers, blog friends and interested readers. I appreciate your support.
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!
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.
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!
Yesterday S and I visited my radiation oncologist, Dr W. We were a little early but soon I was called by a young woman who introduced herself as Dr W’s registrar. (Basically a doctor in training). It was soon apparent that she knew nothing about my condition. She read the clinical notes and said “you have to have chemotherapy, there are no other options for you.” She had almost as much empathy as a lizard. I say almost, because I had a pet lizard as a child and I am fairly certain that it was more caring than this doctor.
I asked her how soon could I see the medical oncologist? At least 3 months was the reply. I asked if I could see someone privately? She got her secretary to check. “You can see Dr L next week”. It then transpired that Dr L would not see me as I had no private health insurance. I told her I was prepared to pay for the consult. The answer was still no. She suggested I get private cover. Pre-existing condition? I think not. That was it. We were both very disheartened.
As we left the registrar’s office, Dr W was in the corridor. He saw the looks on our faces and told us to wait a bit and he would call us in. What a difference! Dr W examined the recent scan results and explained the extent of the cancer’s progression. He discussed why chemotherapy is the only treatment available to me at this time. The Australian government will not pay for any of the other treatment protocols until chemotherapy has been tried and proven ineffective. The only chemotherapy available is Docetaxel, or Taxotere. The only follow up treatment available is Zytiga, or Abiraterone Acetate.
I asked him about other treatments, Xtandi-(not available in Australia) and Provenge, known as Keytruda in Australia and is only available as part of a clinical trial after all else has failed.
My psa on 14 June was 160. I have been taking an Australian plant based substance called Gumbi Gumbi, a well known Aboriginal herbal medicine, 4 times daily. My psa 6 days later was 140. Is this a slowing of the rate of growth of the cancer? Or is it that the Gumbi destroys psa in the bloodstream? No way to tell apart from nuclear scans. However, I will continue taking it along with Curcumin and black pepper.
As if the cancer is not enough to worry about, I have a complete blockage of my sinuses with a severe fungal sinus infection, that can only be treated by surgical intervention. I was being treated with antibiotics and I am now told that they only made the condition worse. At least now I have an accurate diagnosis and a referral to an ENT specialist and treatment is in the pipeline.
Current status, I have been referred to a medical oncologist for chemotherapy. I am awaiting a date for my first appointment, and there are many pros and cons to weigh up. I have requested a referral to an independent medical oncologist for a second opinion. Now it is just a waiting game, so S and I plan to have a few days away at a seaside resort, while we await developments. After that, I will learn all I can about chemotherapy benefits and risks. All we want to do is get it over and get back to Canada to enjoy what remains of the summer!!
On Friday I visited my oncologist, Dr W. He was very supportive and pleased to see me back in Australia. I am having a bone scan and a CT scan next week. Dr W has commenced the process for me to have a psma scan. I feel positive about this scan as it will detect tiny tumours if any, and I can compare it with the one I had in 2016. If it is clear, great! If not, at least we will know where it is and have some idea of how best to treat it.
Dr W will see me again at the end of June. Next psa around 20 June. It appears he sees no great urgency at this stage. There are 3 treatment options, radiation, hormone therapy or chemotherapy. There have been improvements in hormone therapy and that sounds like a good option to me. Dr W said he can arrange for me to take sufficient medication with me to Canada. Chemo would require me to stay in Australia and to me is not a good option anyway.
Meanwhile I am catching up with friends and family. I feel well and life is good. I miss S and she misses me. All of this is so new to her and it is hard to take sometimes. We try to stay positive, but of course there are moments when tears flow.
I thank everyone who reads this for their support, spoken or unspoken.
Here I go again with the black salve, this time in capsules form. I thought it would be black but it’s not, as you can see. I have read so many testimonials about black salve and other natural therapies, it is hard to accept that they are all fake. So, undaunted, I will continue in my quest for a cure, or at least a slowing down of the process.
First, to those who think I am wasting my time and money. These capsules do not cost anywhere near as much as the drugs from pharmaceutical companies. Also they do not do as much damage as chemotherapy, hormone therapy, surgery or radiation, all of which have failed in some cases despite the cost. In fact, people often end up worse off.
My new regime starts today. I take circumin with black pepper twice per day and blood root capsules 3 times per day with food, as per the manufacturers directions. I will continue to monitor my psa on a regular basis. My last psa in March was nearly 50 indicating a doubling time of 5 weeks. Now that is scary!
Any reasonable person would conclude that my experiment with black salve didn’t work, in fact it may have made things worse! Unreasonably, I prefer to believe that it has stirred up the cancer cells, causing them to excrete psa in their agony of dying. I visualise those little buggers writhing in pain, doubled over as psa oozes out of their contorted bodies! The dead bodies mopped up by my strengthened immune system and leaving my body through the usual channels.
Well that is what I choose to believe. My next psa test is later next week. Until then I hold on to my faith. Cancer does not have me. My spirit is well!
Thank you to all who consciously or unconsciously are praying for me, and a big thanks to my partner S who is my faith when mine is weak.