Anyone else only have PC in bones and prostate?

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Has anyone else on this wonderful forum got what I’ve got and what is/was your treatment?

See my profile by clicking on the mini-me in the circle above the post.

I’ve had stage 4,  bilateral prostate cancer (only in prostate and my bones) for 2.5 years, Gleason score 8.

I’ve got DNA malformations of BRCA2 and CHEK2 genes.

My PSA rose to 133 two months ago and I was offered, accepted and I’ve had one cycle of Carboplatin which after 10 days helped caused massive bilateral pulmonary embolisms. I’m in limbo with all treatments on pause until an echocardiogram in three days.

I’m informed by my oncologist that Carboplatin and Docataxel are my only chemo possibilities.

What treatment did you have? How’s it going?

I’m questioning everything right now to find the best treatment plan in the next 10 days before making a decision to continue this chemo that’s paused.

I’m getting a second opinion from another hospital anyway but I want to know what you lovely people have experienced.

Thanks in advance

  • Hello , my husband has stage 4 prostate cancer with bone metastasis. He thought he had a back injury and we ended up getting a private MRI due to mess ups by our health professionals . 

    The private MRI and a trip to A and E with the results is what got him on the start of this journey . That was 9 weeks ago . He was started on steroids immediately and had one session of radiotherapy to his spine .  He was immediately started on hormone injections which he has every four weeks. 
    He had seen the oncologist and had his first infusion on Friday of Doctaxel  as they wanted him to have the hard stuff first as they say they prefer to give him it now in the hope he will tolerate it better and then in the future look at the other drug if they have to. Hes having six sessions on total .

    we have been warned that 1/5 people may have blood clots and he hasn’t been offered any blood thinners but  encouraged to drink plenty and try and walk even for a little bit .

    Day 1/2 he was grand  , fatigue kicked in day 3 and muscle stab pain  on legs , he also has a sore tongue . 
    As you know it’s all such an emotional rollercoaster and fatigue doesn’t help .

    I hope this may be helpful , 

    Kat 

  • You’ve made my day in a sad way. I understand fully the stages you’ve been through. I’m sorry your hubby has the back pain I’ve luckily not any pain yet. Thank you for your reply. I wish you both the best. Try to stay positive.

  •  I will keep you up to date with his treatment plan if that’s helpful. And how he responds etc .

    I am glad it was helpful , your posts are Extreamly helpful to me and I have read them all , trying to build my knowledge from those who are in this reality .

    He doesnt do reading or talking but lets me do all that and then I gently drip feed it all  and this helps him emotionally .

    We all work on different ways but this is one hell of a journey mentally and emotionally , different days different emotions but sometimes reading other peoples journeys are a strange comfort from their honesty .

    Hope you soon get back to you treatment plan and thinking of you and your darling .

    Kat 

  • Hello  

    I hope you don't mind me sticking my oar in here - 

    but this is one hell of a journey mentally and emotionally , different days different emotions

    It is a hard journey and yes 1 in 2 people with cancer have mental health issues or emotional issues so if you do feel the need for some help or just a chat - our Support Line on 0808 808 00 00 (8am to 8pm 7 days a week) is there for you.

    If you just need to vent - we are here too - don't bottle it all up or take it out on your family - we are all here for you. That's one benefit of an anonymous peer to peer support platform.

    If I can do anything for you just let me know.

    Best wishes - Brian.

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