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Markku Leitso and Jeni live in France. He was 63 when he was diagnosed in May, 2009. His initial PSA was 286.00 ng/ml, his Gleason Score was 8, and he was staged T4. His choice of treatment was ADT-Androgen Deprivation (Hormone). Here is his story.

THERE WAS NO RESPONSE TO AN UPDATE REMINDER IN 2016 SO THERE IS NO UPDATE.

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!

UPDATED

December 2009

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).

UPDATED

June 2010

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!

UPDATED

July 2011

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

UPDATED

August 2012

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 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.

UPDATED

November 2012

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.

UPDATED

March 2013

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. We are running out of drug options to lower the PSA count. The scans show little advance of the tumors on my bones 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 with any side effects.

UPDATED

April 2013

Just finished two months on Zytiga (Abiraterone) My PSA has come down from 48 to 28.75 today. My PSA had doubled every month/6weeks. 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 dont know.

UPDATED

July 2013

PSA has responded well to Zytiga it has steadly decreased since I started taking it it is now 2.72ng/ml. No side effects to speak of some fatigue. So, all is well and looking forward to the rest of the summer with the children and grandchildren. Will update when there is a change. I am 5 months on Zytiga now, not sure how long the course will be. From what I read it should last 8 months. Still on Hormone therapy with little side effects (Hot flushes emotional upsets etc. nothing serious!

Soon will be time for another bone scan.

UPDATED

January 2014

I have been on Zytiga for 10 months. PSA has been steadily going down from 48 to 1.190ng/ml. This month it has gone up to 2.120. There have been very little side effects and my life has been great. There are some other health issues which are suspected to be related to the treatments I have previously received. Radiation to the bone Mets and Taxotere chemotherapy via a line to the Vena Cava.

Twice in the last year I have had fluid removed from my left lung which was causing breathing difficulty. This was compounded with Atrial tachycardia which was successfully treated by thermal ablation by catheter. I am currently suffering from angina and am due to go into the hospital to expand the arteries affected using angioplasty.

The last scan showed the metastases are spreading. For the moment we will continue with Zytiga with Prendizone.

UPDATED

September 2014

Things have been steady for the last 14 months on Zytiga. My PSA began to creep up over the last few months and I began feeling better and better as the Zytiga was loosing effect. Suddenly my PSA shot up to 20 in 6 weeks from 7.20. We changed from Zytiga to Xtandi a month ago and the PSA has gone down to 4.15. My experience so far with Xtandi has been OK, it is not as side effect free as Zytiga but not as bad as Chemo. I take it in the evening to help with the fatigue. My sense of taste has gone down and I feel nauseous some of the time, but other wise it is well tolerated. It is early days so will write again later as things progress.

Markku's e-mail address is: mleitso AT gmail.com (replace "AT" with "@")

NOTE: Markku has not updated his story for more than 15 months, so you may not receive any response from him.


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