What's next, please help with any advice

[Nickhmcg]

Hi all, I'm looking for some help staying positive. My Dad (62)is currently on the Peace 3 trial, he had 6 rounds of Xofigo finsihed December 22nd, he's on xtandi and zometa. His hemoglobin levels keep dropping despite infusions, today's reading 7.1, psa up to 170. His last scans -(CT and Bone scan) in Jan showed stable disease (widespread mets) nó organ involvement . Next 2 scans due on March 3rd.

Genetic testing done (saliva) no Brca mutation etc

I spoke to the trial nurse today as there was a mix up in his psa, she said the scan in March will determine what happens next. That his numbers aren't great an indicative that the treatment may not be working. He is meeting with a radiation oncologist next week for spot radiation to his ribs which are quite painful. He hot his Zometa infusion today which will probably cause more pain but I know it's necessary. She said there's a possibility the cancer could have infiltrated his bone marrow which is why his levels aren't improving and keep dipping back down.

What would his next step be? He did 9 rounds of taxodere already and it didn't seem to help at all, his psa went down to 9, but his disease progressed within a few months. I was really hoping he would get longer out of the xtandi 😞

I've been so positive and have done so much research to keep him positive but I've wobbled today. Dad has been swimming every second day last week, played 2 rounds of golf, he has been exhausted after so had a feeling his levels would be low but other than that I thought he was really coming on good.

Today will really have set him back, he is Captain of his Golf Club this year, he has so much he wants to do. He had to retire early because of this disease it breaks my heart to think he won't keep fighting.

Any help or advice is greatly appreciated. X

[Tall_Allen]

Jevtana would be next, if his blood work is up to it. Biopsy a metastasis.

[Nickhmcg in reply to Tall_Allen]

Thank u, is there a chance that will be of more help than the taxodere?

[Tall_Allen in reply to Nickhmcg]

That's exactly what it was approved for.

[Nickhmcg in reply to Tall_Allen]

Dad met with radiation oncologist yesterday, he didn't even need a scan to see dad has a large Tumour (met) on his rib, doing a long hard session of spot radiation tomorrow. He is confident that will relieve the pain and progression in the area.. I guess that means he will be taken off the trail as whether its a new on or progression of existing its still progression. Dad is OK now that he has answers but dissapointed that the disease is still progressing. I know he really doesn't want to do chemo again 😢 scans march 3rd & 9th then meeting consultant after that. The lovely radiation consultant explained to him the swelling in his lower legs was due to pressure on his heart and medication to treat the cancer.

[Tall_Allen in reply to Nickhmcg]

It may help him to know that his rib pain may increase for 1-2 weeks after the radiation before it decreases. That's from the temporary inflammation. Anti-inflammatories may help.

[Nickhmcg in reply to Tall_Allen]

Thank you 🤗

[Radtech40]

I feel exactly like you , I’ve been by my dads side for these past 6 years, going with him to every visit and doing my research, we had a set back of his psa going from 75 to 140 today and meet with the oncologist Monday. I feel very low today so I can relate. It sounds like you are an amazing support for your dad and he looks to you for a positive outlook. He’s very lucky to have you. Anytime I start to panic when he fails another drug, his oncologist tells me that there are so many options and not to buy worry and that we’ll just keep trying things until something works.

The good news is your dads last scan didn’t show progression and the onc always tells us he’s not treating a rising psa , he’s treating only if he sees progression on scans. My dads psa spiked before from 29 to 85 but scans were good so he held off then for some reason it dipped to 70 and stuck there for a year. Has he been on Xtandi long? Sometimes it bounces up then down and can take time to stabilize.

There are a lot of options and alot more coming on the market. Try to stay positive for your dad, it’s hard at times, today was a meltdown day for me too. I’m sure your dads oncologist already has the next step in mind and will keep trying things until one works. I have found it helpful to ask his oncologist questions when I’m with dad at his apt. So now he seems to offer options ahead such as we’re going to try this but if it doesn’t work we have this or that and we’ll keep throwing things out until one works. Maybe talk to his oncologist when you’re there and he can relieve some anxiety for you. In the mean time try and hang in there. I have found this site to be of help mentally at times when I’m having anxiety.

[Schwah]

I too find great joy in going out and playing golf. Please make sure he does lots of stretching and at least three days a week of weight training. It will prevent loss of muscle mass, make him feel better, help him live longer and most of allHelp his game.

Schwah

[Nickhmcg]

Would anyone know is there any chance the Xofigo is still in his system (Dec 23rd last infusion of 6) and that's why his hgb & platelet levels aren't climbing between transfusions and why his PSA is rising? His levels started giving trouble after that last radium infusion. WCC slowly increasing and testosterone is 0.04, CRP quite high.

[HopingForTheBest1]

Does he participate in any support groups, either online via zoom or in person? I have found them extremely useful, informative and motivating.

[Nickhmcg in reply to HopingForTheBest1]

No he refuses, and refuses to speak to any counsellers. Its just his way, he can cope with Having prostate cancer but can't cope with talking about it. I stopped trying to change his mind when I realised its literally how he is coping with it and I have to respect that. I do relay information that I pick up here if it's similar to something he is going through.

[HopingForTheBest1]

As a caregiver you may be able to participate on his behalf.

[Green_Guy]

Don't know what your dad's state of mind is right now. It sounds like rib pain is the primary issue for him now, maybe. I hope that he can be as pain free as possible. I hope that he is able to meet with as many loved ones as possible and that there be meaningful communication on how much he has meant and touched the lives of those people.