Gleason 9

Hi all,

Rather a long post. Apologies🙈

My father was diagnosed around 2 years ago.
Here are his initial results:
T3b plus lymph node.
Psa 16 (initially thought to be 16) Was in fact 30
Gleason 9 (4+5) (4 +5)
Initially given hormone tablets leading up to 3 monthly injections.
Radiotherapy
PSA reduced to 1.4
PSA increased to 2
Current PSA Level: 13 (June 17)
Now reintroduced tablets and taking a Bicalutamide tablet daily. Zoladex injection every 3 months
To be reviewed in 2 months (September 17)
September 17... psa 70
Taken again in December... High again (unsure of number)
Starting Zytiga on 9th Jan 18



Anyway, cut a long story short...he had a scan a few weeks ago and there are 'spots' in the lumbar region. Apparently they were there 2 years ago but I'm pretty sure we weren't told about them! The consultant was 'aware' apparently. He received radiotherapy about 2 weeks ago, since then he seems to be struggling. Throughout this whole thing he hasn't had any symptoms at all, so it's very upsetting to see. He's off his food, everything tastes salty and he feels very tired and weak. He's complaining of aches in his upper thighs/groin area. This has coincided with the radiotherapy... He seems much worse! My question is... Is this common after radiotherapy? Last time he breezed through it, I think he was expecting to this time too.

He starts arbiterone in January... I'm wondering why he can't start now! Does anybody here have experience of this drug? I'm scared, he seems so out of sorts, not himself at all. So many thoughts running through my head... Is it going to be all downhill from here? Is this just a bad patch and once he starts his new regime things will improve? I realise this is a very difficult question to answer but is it possible that things may improve somewhat? I know it's a matter of controlling this wretched thing rather than curing it but do any of you have any experience of similar ... I'm presuming the cancer is active at the moment... Will the drugs make it inactive again?

i don't go to appointments with my Dad, he would hate the fuss... My mum goes with him so I just have to go off what she says... apologies for any incorrect use of medical terminology.

I would really appreciate any input at all. I fear this is the beginning of the end, I'm so worried. Thank you for reading X

Post Edited (Kathy77) : 12/24/2017 1:09:37 PM (GMT-7)

Kathy,
Glad to see you made it here. With the holiday, initial responses may be delayed, but rest assured, some of the more knowledgable members will be here shortly to help answer your questions and concerns. I hope the best for your dad and family. He is a lucky man to have a daughter like you. Like redwing said, you’re not alone in this. We will be here for you and dad.

Dennis

Dearest Kathy
You have (as you can see), come to the right place for encouragement, information and support. It sounds like you're dealing with a lot right now, and my heart goes out to you.
Just know you are not alone, and once your Dad's docs sort out his new meds, there is absolutely hope of keeping this thing at bay for an extended period of time, as you will hear from many other men on this board, dealing with the same thing.
I hope you can somehow find a way to enjoy this Christmas; especially each others company, which is so precious.
All the very best to you and yours.
Jaybee&GG

I doubt that a few radiation treatments to his lumbar spine caused a change in his taste buds or his fatigue or his physical decline. It should only have relieved pain and prevented spinal compression. His change in status may be due to depression (which is understandable), his cancer or other causes. Perhaps it is worth further investigation. Zytiga is great stuff - I hope it works a long time for him.

A G9 wife chiming in.

Zytiga is likely to give your family a significant amount of time, it seems. Radiation can cause fatigue, but as TA said, if it was just a few treatments it’s unlikely.

It would be extremely understandable to be depressed and out of sorts with the evidence of progression your father has. And fatigue comes along with depression for sure. That’s definitely worth following up on.

But also: your father may be helped by physiotherapy, to improve strength so he doesn’t feel so weak, which can also address fatigue, and that helps with depression too. My husband found a good physical therapist who has worked with cancer patients, and it’s certainly helped him. (He’s on an antidepressant also, by the way.) Be sure your fathers doctor (could be a family doctor?) gets asked about this.

Best wishes
—Carolyn

I always record my doctor on my cell phone - he suggested it.
I'm a g9 and there are many new treatment options for us. You have come to the right place.

Larry E

My hormonal therapy is Eligard injection every 6 months and initially I had 6 rounds of chemo (Taxotere). For bone strength I was on Zoladex injection every month, but my MO stopped that 2 months ago because of dental problems and pain in jaw. Last year I went to MD Anderson to get a work up for a clinical trial, but was given Provenge. I turned down radiation treatment because I was told it is for palliative care.
When I was initially diagnosed I went into shock and probably still am a little, the nights are the worst I can start thinking about everything and can’t go back to sleep, I often get up at 3 or 4 in the morning. I’m normally tired and force myself to get going I still work every day and that is important for my attitude and feelings. I teach math and can’t stand as long as I use to, so I teach seated and write on a projector. I have hot flashes, so I keep a fan also a glass of ice chips in my class room. The hormone therapy is very serious medicine and for me it causes weakness and pain in my legs when I walk sometimes I walk with stiff legs like Frankenstein. My back hurts most days but that’s from the metastatic lesions. I am still active with my job on many committees with the school and with the state board. I also have my wife, 4 daughters I love and worry about and that takes my mind off my condition.
The reason I went to MD Anderson was for a clinical trial, but they gave me Provenge instead - and then I was going to start the trial, but a funny thing happened my psa dropped and my scans stabilized after the provenge. By the way earlier my doctors in Tulsa ask for the provenge treatment but is was not approved. If I was still following my doctors in Tulsa I would not be as well off. My MO in Tulsa treats all cancers. My MO at MD Anderson only treats advanced prostate cancer I was so happy I felt like crying when I met the team in Houston.

My MO at MD Anderson is part of a team who are working on a cure and hope to have that in the next few years, but he told me if I exercise and watch my diet I will live to be 100 without the cure. The reason I went to MD Anderson was for a clinical trial, but they gave me Provenge instead - and then I was going to start the trial, but a funny thing happened my psa dropped and my scans stabilized after the provenge. There are many new and exciting treatments now your dad and I are lucky we did't have PC several years back when there was nothing new to help. There are many new combonations of treatments that are better than taking each medication seperatly, if your cancer has a certain genetic make up there are special treatments that are very effective. My PSA started at 203 and look below at what it is now. I feel much like your dad and I get down but I also have hopes and dreams about what is possible.

My older brother was diagnoised with PC in 2016 and I went with him to the doctors because I knew more about PC than he or his wife; if you know more about PC than your dad you should go and ask the questions that need to be asked. My brother would never take the time to study or read about PC I don't know why but many men just go and take what ever the doctors tell them. I ask why and what are the other choices, also I asked about the clinical trials that are open now.

Larry E

Along with the initial diagnosis of being told you have cancer, come all the thoughts, worries, questions, treatments, successes and failures. Especially if in your mind, you look at the first attempt at fighting this disease and feel you may have beat it, only to have it come back to haunt you again. Hormone treatment alone brings with it many side effects. I am currently on Lupron and the side effects can be crippling at times. Fatigue, hot flashes, weight gain, depression can all part of the the treatment. Many of us are still in the first line battle with Pca. Your dad has been fighting and now its another battle he's facing. It wears and tears on the person. As others have already suggested, it may be time to have that talk with a psychologist or another doctor who may work with cancer patients on their fears and worries. And as capivak said, maybe some physiotherapy to get him moving and about.
We all understand your fears and worries for your dad. If your's are so great, try to only imagine what his are like. At initial Dx, we are all overwhelmed. Even our family members are. If you read through some of the threads on this site, you'll find some remarkable stories of strength in the face of cancer. Treatments, drugs, testing and recurrence or worsening, probably are what are effecting your dad. Depression can set in deeply and that brings the thought of all hope is lost. It isn't. You and your family need to throw everything at this to fight for your dad. Whatever it takes to turn his almost defeated attitude. Its not going to be easy, but looking for outside therapy may help him. it certainly isn't going to hurt.
Believe me when I say that everyone in this forum feels your pain and your dads. Our hearts and prayers are with another brother in this fight and always will be.