Markku Leitso and Jeni live in Puy de Dome, France. He was 63 when he was diagnosed on May 5, 2009. His initial PSA was 286.0 ng/ml, his Gleason Score was 8 and he was staged T4. His choice of treatment was Hormone - ADT (Androgen Deprivation Therapy). Here is his story.
Hi, I am currently undergoing hormone treatment for my cancer for 4 months, having 3 monthly injections and taking pills daily. My next meeting with the urologist is in December. We will see then if the treatment is working.
My wife and I are feeling strong and enjoy life day to day. We have been making provisions and planning for the eventual death of one of us, but it isn't paramount, doing things together and enjoying what we have is the best.
I expect the future will take of itself. I am being treated in one of the best hospitals in France for Prostate Cancer and have every confidence in the doctors there.
I will update this when I know more how the cancer is doing!
Six months ago after the initial diagnosis T4b, I startd HDT (Enantone L.P 11.25mg-[Leuproreline]/3 monthly injections Plus Casodex [Bicalutamide 50mg.] tablets daily).
The hormonal effects have been "interesting" but not as bad as some. The "Hot flushes" and emotional outbursts (crying and laughing....Occasionally at the same time) have caused some amusement after they pass. Jeni, my wife, has every sympathy for me. It is a totally different experience, kind of smiling in a knowing way at each other, with the "Now you know how I feel sometimes" comment left unsaid. In the mornings we sometimes exchange numbers of "hot flushes" we each had in the night.
Yesterday had the results of the first PSA count since starting therapy. It was an enormous relief to be down from 286.0 to 0.14. I have an appointment with the urologist on the 8th Dec. I expect him to be pleased.
I was asked by a friend to join his "team" at Movember a charity drive for prostate cancer and general awareness of men's health. I was a bit dubious at first, as I am not really that kind of person. I went ahead and was overwhelmed with the response. It wasn't so much the money we raised, but it made me feel much better about me and my cancer. It was kind of a wonderful positive way to "come out in the open" to all my friends and acquaintances.
I will update after seeing the doctor.
Later: The Urologist was pleased with the results and I am continuing with the ADT treatment. Booked in for an abdominal scan as he is wondering if the treatment had reduced the 'ganglia' found around the lymph glands on the previous scan. Got the pictures of the bone scan and they are posted below....They show quite clearly the bone metastasis as black spots.
Very happy for the good news and Jeni and I are looking forward to spending Christmas with the grand children! Next update next June (unless something happens before).
It's a year! Have been checked up by the urologist and oncologist today. They are both very pleased that the treatment has worked very well to date.
Continuing Lupron 3 monthly injections,and monthly Zometa IV's but dropping daily Casodex tablets. The cat scan showed greatly reduced tumour size and related ganglia growth in the abdomen. The bone mets have not progressed nor have they caused any pain.
This first year since diagnoses has been dominated with endless concern about my mortality, despite trying to live in the present and not the future. I must admit that it feels good to have this milestone behind me and looking forward to some more!
The PSA count has increased a tiny bit since the low of 0.14 to the present 0.35. The monitoring continues with 2 monthly blood works.
Off to Italy for a few days to celebrate 25 yrs wedding anniversary with my wife Jeni!
Today I got a tattoo!
The drive to Montlucon, the big city, was wet and foggy like a London summers day. When it is like that you can
never find a parking place. We left plenty of time to get to the appointment and despite having to park near the
cemetery, we got to the reception desk 10 minutes early at 10 to 11:00. I passed over my appointment card and
we were asked to wait in the waiting room adjacent. There were 3 other men waiting, who bid us “bonjour!” I
had a thought that it was going to be a long wait. We had just found two comfortable chairs to sit on and I had
picked up a magazine to read when a man in a white coat came into the room and said “ M'sieur Leitso” reading
it from a card in his hand. Surprised I said “oui” and stood up looking around questioningly at the other men.
The man in the white coat asked me to come with him. I put the magazine down on the table and gave Jeni my
bandolero to hold for me, picked up my large bag of films and followed him out of the room. It wasn't a long wait
at all and my spirits were lifted.
We went down the hall and through a large door with a big yellow and black radiation symbol. There in the
middle of the room was a familiar sight, a long narrow conveyor belt on an adjustable table and just next to it a
large machine with a hole in it like a big doughnut where I knew the conveyor belt would pass me through. It
was a Cat Scanner, smaller than an MRI scanner overall but with a bigger, but shorter length hole in the middle.
I smiled to myself, this would be easy. No fear of claustrophobia with this one.
The man in the white coat had disappeared and came back with a digital camera. He asked me to strip off my
shirt and tee shirt and sit on the chair by the wall. Walking quite close to me he pointed the camera at me, took
a shot and said that this was so there would be no mistake identifying me.
That was good, I thought and my mind went back to last year when there was a scandal at a hospital in Lille, (I
think) where there had been a mix-up and several people had been given the wrong dose.
I was asked to lie on the table conveyor and a knee rest was put under my legs. Two other men in white coats
came into the room and they taped little pieces of lead on my arms and chest which corresponded to two laser
lines forming a cross hairs on my chest. Then followed a kind of "dance of the scanners", back and forth
through the hole a few times at varying speeds and then rest to “fire up” the large rotating scanning heads
which are just visible through a narrow window in the middle of the doughnut hole, then the scan its self.
After the performance, I was left to baste in the scanner for what seemed a long time and eventually the
conveyor transported me out of the hole and stopped clear of the machine. The three men surrounded me and
and began to make marks on my chest with felt tipped pens checking and cross checking with each other. This
was quite nouvelle for me but I could see on the men's faces that they had done this hundreds of times and
showed no excitement, just the professional calm of men who knew their jobs.
My chest was just beginning to look like the Mayan Laylines, when the Oncologist, Dr. Tao walked in with a
young female nurse.
“Hello” he said, and asked me how I was. He always has a big smile, even when giving me bad news. He is of
Chinese decent from the Iles de Maurice and wears happy round horn-rimmed glasses.
“Fine” I replied. The pleasure of seeing a familiar face showing on mine. “It is very interesting” I added
He asked if I was Finnish, strange, I thought as he knew that already as we had talked about it on several
occasions before. Turning his head to the young nurse he asked if there were lots of mosquitoes in Finland. I
nearly burst out laughing, realizing that the young nurse was probably going to Finland and didn't believe that
Finland had mosquitoes.
With a broad grin I said “O, oui il ya boucoup là-bas”. The nurse looked a bit chest-fallen and Dr. Tao patted me
on the shoulder, smiled with a twinkle and said “I will see you a bit later” and rushed out with his white coat
flapping and the nurse following in his wake. That small episode was wonderfully warm and made me feel part
of the “family” instead of just another old patient passing through on his way to the cemetery. They are very
good at that at St François Clinic where I have my treatment. They are clever people.
The men in white immediately filled the gap left by Dr. Tao and the nurse, and one said to me that there was just
the tattoo left to do and picked up an needle and ink to tattoo three blue dots on my chest to indelibly mark the
axes for the radiation gun to aim. I have 10 sessions of radiation treatment on a vertebra where a cancer
metastatic lesion has set up home and is threatening to invade the central nerve column, plus a new tattoo, my
first for all!
They have made great inroads into radiation treatment in recent years (I hope!) and it is much less dangerous
or damaging as the radiation rates have been found to be effective at much lower doses. Plus, the careful
precise delivery has been refined with the use of scanners and the procedure I had just been through!
No doubt next Monday I will get “zapped with a smile”. I will let you know how that goes.
Hello! Time does fly by.
We have spent the last year in relative calm. My PSA count has started doubling every six weeks or so from it's low of 0.16 to now 5.5. There has been some pain issues in my back, however an MRI in January showed that it was mostly arthritis at the top of my neck and base of my spine. They did find that one vertebra had been totally invaded by a PCa Metastasis which was threatening to squeeze my spinal cord and then possibly causing paralysis from T4 down.
I was immediately given 10 daily radiation treatments for that area, the last two treatments at a higher dose. There was considerable discomfort from the radiation burning my oesophagus for about 10 days afterwards which hasn't totally disappeared but isn't much of a bother.
In addition the Urologist has put me back on daily Casodex tablets as well as the three monthly hormone shots. In addition I have monthly Zometa drips to strengthen my bones. So far all is well except the pain is increasing but being ably treated with pain tablets.
We are into the 3rd year of PCa from an initially very poor prognosis. It has been great to have the time to prepare for any eventually! I have been very lucky in that I have responded well to the hormone treatment. There are some exciting new drugs coming along for advanced androgen independent PCa, so, the prospects are good for the future.
I have written a short humorous account of the radiation treatment.
Yours faithfully, Markku Leitso .
A slight slowdown of the "Doubling Rate" probably due to coming back on to Casodex. I have had another bone scan which showed that that the previous metastases had shown reduced activity I have a new one L1 which looks quite active. I have a meeting with the oncologist in a weeks time.
I am getting more severe side effects from all the medication plus the pain in my back is getting more difficult to deal with. The side effects are hot flushes which leave me pretty incapacitated, and last for 10-15 mins where I must loose a pint of liquid. General flu like systems are more difficult to shrug off.
Overall I am not too depressed by the climb in the psa count as it is not a great surprise but I wish it could have waited a bit longer. There are lots of very promising "game changers" in the search for better medicines for advanced prostate cancer, so fingers crossed that I survive till some of them become available!
Had a meeting with my Oncologist this morning, Dr. Tao. We had a fair amount to talk about as my PSA has risen to 8.2 from 5.5 in about 2 months. I expect we are seeing the cancer learning to live/spread without Testosterone. Also on the table was the latest bone scan results which I had seen. They were mixed, the old metastases from the last bone scan in 2009 were greatly diminished but there were two new ones: One on a rib in my chest and the other on my backbone (L1) which is a bit menacing.
The result was that we agreed on further radiation treatment on the two sites and following up with a course of chemotherapy.
I had long considered what I would do if or when I reached this stage (Hormone-refractory PC -HRPC) . As the chemotherapy from what I read is not very effective in prostate cancer. It is however, one next step in the available treatments for PCa. I don't know how I will react with regard to the side effects, but I don't seem to be hit terribly hard by side effects of the medical treatments until just recently. I think that it is important to try everything available once PCa gets to this stage. So, off on another adventure in this journey. I also get a couple of new tattoos!
We also decided to double the dose of Oxycotin for the pain which has been getting worse. I have just started them and I can say they are very welcome!
Will update when the radiation treatment is over, which should ease the pain.
My story has changed somewhat. The hormone induced remission is over and my PSA count has nearly doubled every 6 weeks or so over the last 4 months. A recent bone scan showed two new lesions, one on a rib behind my heart and another in my vertebra at L1. Between the oncologist, my wife and I, we decided to go with a second series Radiation treatment to ease the pain and delay the growth of the lesions. The worst thing about the whole radiation process was the hour and a half I spent in the scanner tube with my arms pinned behind me whilst they were trying to work out the best way to "aim" the beam at the rib lesion behind my heart and avoid the organ soft tissue. About halfway through the daily sessions I experienced some nausea which was brought quickly under control with Primpéran (Métocloparmide French name!) I have finished the treatments and am waiting for a course of Chemotherapy which should start on the 17th November. I am still upbeat despite the rather poor prognosis and the very occasional day of slight depression. I will update again then on progress.
The end of another year and I am still well. My PSA kept rising to 18.5 in December 2011. Together with the oncologist we decided to go for chemotherapy, Taxotere weekly sessions. The chemo started out being not particulary hard, but as Taxotere is accumulative after 4 sessions my hair fell out together with my finger and toe nails. Nausea and vomiting was a problem and I began to loose weight. I was admitted to hospital in an emergency with a atrial tachycardia, which stopped the chemo for a while. The chemo was restarted with the same side effects. After 4/5 sessions I was again admitted to hospital this time with fluid in my lungs which was drained off. This could have been related to the treatments for cancer.
I am now just taking hormone therapy as we wait for my psa to rise again. We have been talking about Zytiga (abiraterone acetate) as the next step in my treatment.
After several months of low PSA counts and a holiday from Chemo therapy, my last two blood tests showed that my PSA is doubling every two months or so. It is now 8 ng/ml. My oncologist sent me for a bone scan and a pet scan both of which showed no advancement of the metastasis, good news! However, I guess that there is no target to aim a treatment like radiation therapy. We have decided to increase the dose of Casodex ( Bicalutamide ) to 150 mg per day from 50 mg over a period of two weeks for the time being. Still talking about Zytiga (abiraterone acetate) but holding off for the time being. The "weapons arsenal" is diminishing.
Life is still good and energy levels are much better now that I am off chemo therapy
I have been just taking Lupron and Casodex for the last months and my PSA has been on the move. It reached 13 two months ago and we trippled the Casodex dose to 150 mg per day. The PSA yesterday reached 32 and we decided to take Zytiga 1000mg ( 4 tablets ) per day together with Prendisone 2 x 5 mg per day. The cost of Zytiga is a bit alarming! Fatigue is still a problem but otherwise I am well. I have another meeting with Dr. Tao my oncologist in 15 days to see how I am tolerating the new drugs. I will update my story then.
Just finished two months on Zytiga (Abiraterone) My PSA has come down from 48 to 28.75 today. My PSA had doubled every month/6 weeks. The Zytiga is taken with Prednisone (5 mg twice daily). I seem to be tolerating both quite well with very few side effects. I have a low grade headache and a bit of tinnitus, but otherwise potassium level is good and blood pressure is normal. Blood tests came back in good shape. It looks like we will carry on with this until it stops working, after that I don't know.