What to expect next

FormerMember
FormerMember
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I am caring for my husband who has had prostate cancer since 2009. His psa on diagnosis was 26 and he had a Gleason score of 9. Was immediately put on Zoladek, and had EBRT as well as HDR Brachytherapy. All went quite and low PSA till 2012 when on rising PSA he had HIFU and within the year also had Nanoknife.  In 2017 PSA rising and Cancer spread to  spine, and ribs. Spent 18 months on Arbetirone and Prednosilone and Denosumab. PSA never went below 7 and after Bone Scan Cancer in 2018 cancer extensive in bones. In March 2019 started six Radium 223 injections. Bone Scans showed stable and no new spread. In April 2019 had extensive bilateral pulmonary embolism and dvt in left leg. Psa creeping up and now 154. Alkaline phosphate level 306. In October hospitalised with septic arthritis.  Next standard treatment chemotherapy but consultant not keen as doesn’t think Hubbie  is strong enough. Enzalutimide not possible due to heart complications after pacemaker fitted after Arbiretirone. He is very fatigued, and has dizzy spells. Nausea is an issue, often breathless and only short term mobility. Mostly in wheelchair and sleeps on and off most days. Constipation a huge issue.  He is very frustrated as quality of life now diminished. Is this standard and do most patients become bed bound. Other than wrist there is no pain which confuses me, is there always pain? 

  • Hello Aspley

    Ten years battling this horrible decease, I applaud him for what he’s been through so far, I bet the hospital knows him by name, it is extremely sad, that after such a long time that he’s succumbed to how he is now. I know it’s a little late but I take acal3 it helps build the calcium in bones.

    Pain is a factor, has he been offered any pain relief ? Does he have a nurse come in and check him ? My wife is my carer and I know how stressful it can be for all you ladies, I have a wretched cough at the moment, I just hope it’s what’s going round and not got in my lungs, as like your husband I have it in my bones have had for three and a half years, still for my wife I will fight as best I can.

    Take care

    joe

  • FormerMember
    FormerMember

    Hi Aspley,  I note you haven't had any replies as yet so thought I'd chip in despite the fact that, sorry, I can't really answer your questions.

    I can however offer some comments which I hope you find helpful.

    I appreciate your confusion about pain. I don’t have advanced prostate cancer myself but I have had experience of dealing with men with advanced prostate cancer who were experiencing various levels of pain. It’s probably “normal” to expect some pain and best to prepare for how it can be managed if it does occur.

    It might help reassure then, that you acquaint yourself with the measures that can be used to manage pain, whilst still hoping that it won’t.

    At the moment however, if your husband isn’t experiencing pain, then it’s best to accept that as it is. It’s something to be grateful for and being grateful for things is a good strategy for helping to overcome problems associated with cancer.

    As regards the other issues. Fatigue can’t really be avoided but there are ways in which it can better be managed and there is a good Macmillan booklet on this.

    Click here

    Paradoxically, moderate exercise can help alleviate fatigue. If exercise is excessive or if no exercise is undertaken, then this may exacerbate fatigue.

    Eating and nausea problems will occur. There is also a good Macmillan book on eating problems and if your husband is less nauseous he might eat better.

    Click here

    This can also be partly managed by herbs e.g. arrowmint is known to help calm the stomach as is ginger, cinnamon and mint.

    If the nausea is associated with the dizziness, then some relief be gained from an acupressure bracelet, which can be used for travel sickness/motion sickness. At one time you could get these from Boots.

    In the meantime make sure he drinks lots, dehydration can worsen nausea.

    Loss of mobility is a problem and if it increases he, and you will need further help with this at which point care services will be necessary.

    Quality of life will inevitable be affected by these issues and this is a more complex psychological issue in which you need supporting.

    Overall don’t be afraid of asking for help.

    You can “ask an expert” about any of these issues on this Macmillan site.

    You should have a Clinical Nurse Specialist or Key Worker who should be able to give you access to clinical services. Through these, or by your GP, he could be prescribed medicines for the dizziness/nausea and other clinical needs. If he is taking anticoagulants still, I hope this is being monitored.

    For more emotional support I suggest you approach your nearest Macmillan Information and Support Centre who can signpost you to local services. As a carer, you need support too.

    To find a local centre click here

    Or call 0808 808 00 00

    Sorry if this isn’t much help, but I hope it is some.

  • FormerMember
    FormerMember in reply to joeven

    PS

    Boots Adult Travel Bands are £7.99 for two

    https://www.boots.com/boots-adult-travel-bands-1-pair-12-years-10112488

    This is not intended to advertise them