Groin and lower back pain

Me again. For those of you who don’t know my story.. Dad is a G9, last psa was 280... An increase since starting Zytiga but we are hoping for it to reduce (it appears rather erratic at the moment... an increase of 60 in a month!)

Dad’s movement is very poor at the moment, he has been provided with a wheeler and he’s just started on morphine. It’s very difficult to describe the sort of pain he is experiencing as he can’t really describe it himself. He is not crying out with pain, I think it’s probably a constant aching feeling. It should be noted that he also has arthritis in the spine... the aches and pains have been much worse since radiotherapy back in November... could the radiotherapy have worsened the arthritis? I just don’t know.

He complains of pain in the groin a lot and manoeuvring from a sitting position to a standing position is very hard for him. Wondering if anybody has experienced similar and what do you find to be helpful managing it? We make sure he gets out of his seat every few hours and goes for a little walk with his wheeler as I believe it’s important to keep moving as much as you can. It’s a tricky one, we aren’t sure what’s causing the pain.. the pca or the arthritis. He uses heat pads on his back although not ideal at the moment as he’s experiencing hot flushes.

Anyway, just needed to talk a little. UK readers... Having read about Bill Turnbull’s (tv personality) story, desperately sad to read, however, I took some positives from his story and even with advanced pca with numerous mets to bones, Drs expect him to live many years yet. Hats off to him for raising awareness.

Wishing you all well. Any advice, as always, much appreciated x

Thabk you for taking the time to respond Michael. I hope that you are doing well. I will try to find out more about Celebrex X

Kathy, are the pains your father is experiencing coming from the same spots that showed cancer in his bone scans? How is his attitude? I hope he is not sad, I think that's one of the things I worry about the most. I think it is great that you make him get around every so often. There's that old saying, "If you don't use it, you lose it."
Although my husband doesn't have cancer, he has pain from a bad back. He fell at work in 1996 and has had to have 2 surgeries, having to go again next week for another MRI. He has constant pain and the doctor prescribes him Methadone but has recently cut back because of all the problems in this country with drug abuse. He also has a TENS machine of sorts that he is supposed to use. Specifically it is some "RS Medical" device. I am not sure if these would work in your dad's case but I just thought I'd mention it. He'd probably be more likely to get the TENS machine since Methadone was hard for my husband to get. Some of my husband's back pain is from arthritis as he's 59 years old. So since the TENS helps arthritis, it may help your dad as well. I am not sure about pain from bone mets.

Hi Tall Allen, he had a TURP years ago, pre PCa. Whether they missed something then... I just don't know. He has had radiotherapy. First round was over a period of 6 weeks, that was about 2 years ago. More recently he had a one off session in December.... Palliative radiotherapy with a view to helping with pain. Unfortunately his pain has worsened since then.... Like I said... Hard to tell whether it's progression of the disease or arthritis that's causing the discomfort.

My signature sometimes appears and sometimes doesn't. Will look in to it. X

Thanks for the background, Kathy. To get the signature to show up, just check the box below when you write each new post that says "Include Signature." I always check the box to get an email reply too.

Kathy, what are the doctors planning on doing for your dad now? Are they giving him something new for his PSA? Also as someone said on here, the docs can give meds to shrink the bone tumors.
What kinds of things does your dad like to do sitting down? Maybe you could play board games or cards or watch a movie with him? That might make him feel better. How are you and your mom taking it?

Thanks Tall Allen, I greatly appreciate you looking in the UK for trials for me. That’s quite a way from where my Dad lives. Although I believe there are trials available in the local area. I have taken a lot at this site...
http://www.stampedetrial.org

I’m going to e mail them to ask for some further advice. There has been no mention of taking part in any trials from his consultant. Is it something that has to be agreed by his Dr? Does the Dr refer you? Quite honestly I don’t know what they’re playing at. Like Lisa I feel that they’ve never really taken an aggressive enough approach but I’m not a Dr, just a worried daughter. Dad has complete faith in his Drs and I don’t want to rock that boat.

I often wonder why chemotherapy hasn’t been offered to him, Zytiga, according to his notes is classed as oral chemotherapy but I believe it’s a form of HT... it’s rather confusing. Maybe he feels my Dad isn’t strong enough to go down the traditional chemo route.

Lisa the next port of call is an appointment with his consultant. The appointment has been brought forward a little owing to the rise in psa so I won’t know any more until that meeting has taken place. I watch a lot of television with him, he loves the football... that keeps him happy The thing that gets to him the most is not being able to cook for everyone. He loves to be in the kitchen preparing meals and he’s just not able to at the moment. Like I said, some days are better than others. Keeping on keeping on xx

Thanks for the input George I totally agree with you, I'm all for it, no matter what the distance. My Dad... He's another matter. He trusts his Drs, I think changing drugs/Drs etc would be very stressful for him. I will give them a call though as I'm not at all sure how it all works... Would he stay under the same consultant and just attend the designated places during the trial period? I think the word 'trial' would also put the fear of God in to him.... He knows very little about PCa, sometimes I wish he were more like you guys, on the other hand, is he best not knowing. A little knowledge without a medical background can be rather frightening.

Shall give them a call now and will post an update if I manage to speak to anybody X

Thanks so much Tall Allen. Coming from you and others I’m guessing that you ‘rate’ the trial suggested so will definitely look in to it xx

He’s still on the Zytiga... I’m not sure how long they will leave him on it.. I read somewhere that a guy was kept on Zytiga even though his psa was increasing as his bone mets were shrinking.... which seems unusual. At what point should we be questioning the efficiency of the Zytiga? I had hoped that we would have started to see results.

I really hope my parents will listen to my suggestion about getting involved with trials. I’ve said it from day 1, his consultant ... is classed as a clinical oncologist specialising in breast and urological cancers. If it were me... I’d be wanting a dr who specialised in just advanced pca. I’m sure he knows his stuff but I get a little frustrated from time to time. It’s a balancing act... in front of my parents I’m Mrs Positivity, in reality I can’t help questioning everything! X

Hi Kathy, it is amazing how much we are alike. We are going through pretty much the same thing, worrying about our dads, taking this journey.

I am wondering why they didn't test your dad's PSA from December until March. It seems with a PSA rising that quickly that they should have tested it before then. When is he going to his next appointment? For my dad, I always feel like, "get him in NOW, not two weeks from now!" It seems like they just twiddle their thumbs getting people in for their appointments. Just like last week how they said my dad's PSA has gone up and they are going to wait to give him another PSA test. I thought it was crazy. My dad went and told them at the cancer center that he's worried and he only gets 1 hour of sleep at night and can't stop thinking about it. The nurse told my dad that she will mention that to the doctor, but the doctor knows what she's doing. I told my dad she's the doctor and we have to do what she says. I went to my mom and dad's today and we did not discuss PCa at all. It was more enjoyable that way.

Your dad's Zytiga may be helping him some. If he were to stop taking it, it could be going higher. You mentioned how you are confused about Zytiga being chemo or hormone therapy. I have wondered the same thing! It said right on my dad's bottle that it was chemotherapy and when I asked his doctor about us touching it, she said we didn't have to worry about that because it was just hormones anyway. So I don't know, I get confused with that too! Maybe it is sort of an in-between.

My dad was on the Zytiga before having any chemotherapy and she stopped the Zytiga just because of his rising PSA. I have heard my dad's doctor is very good and I hold her in high regard, it's just that it seems odd how she doesn't follow "protocol," but I guess it could be because every patient is different.
I hadn't heard of anyone's PSA rising while mets are shrinking while taking Zytiga, but I heard that happens on Provenge. They said when you take that not to worry about PSA.

I am wondering if there is any way you can make up some sort of table for your dad and put one of those hot plates on the table. Then you can wheel him over and give him the food and utensils so he can cook. I don't know him but I think it would make him feel good. If he wants to make a dish, he could make it and all you'd have to do is throw it in the oven. Not only would he be doing what he likes, but he'd have you there to help him!

Yep, the same. We both have a lot of anxiety, both frustrated with waiting, both questioning their methods. You know EXACTLY how I am feeling!

My dad was on the Zytiga for about 8 months or so until the PSA started to rise again. He didn't have any other signs or symptoms, just the rise in PSA. Obviously she chose to use it before chemo/Taxotere as referenced in what you wrote earlier. I think your dad will probably get chemotherapy soon. I had wondered about that for my dad but it sort of seems like they use the least powerful drug and keep moving up. Only now my dad's is back tracking to what stopped working before. I don't like how they do it that way when it seems like there's a good chance it won't work again. But I'm not the doctor, so she must know what she's doing.

It's probably best if we don't go around on the Internet reading all kinds of stories about statistics, etc. My dad's doctor sounded disgusted and told me to get off the Internet because half that stuff on there isn't true anyway. It's hard because there's something inside of me that wants the answers and it's hard to stay off the Internet sites but lately I feel better just coming here and talking to people like you and the others going through the same thing. I can read about the medications but there's nothing I can do about what she prescribes. I could say, "I read on the Internet that this medicine should be used at this stage, etc." but what do I know, just because I read it on the Internet? There's just a part of me who wants to fix it for my dad but logically I know it is out of my hands. So for now we just have to enjoy the time we have and try to have good times!

Let me know if you try the hot plate idea. If your dad is feeling depressed, he might not want to do it so you might have to bring the hot plate in and the food and say something like, "dad, today we're going to cook." I think it will help because it will show him he can still cook even if it's not like before. It would be interesting to hear if you try it and how he likes it!

Glad to hear he is feeling well enough to cook. Is it that some days are worse than others? Are they giving him anything for his pain? Do you know when he goes to the doctor?