Didn't think it could get any worse (Gleason 10!)

Hi there

my husband( also Gleason 5+4) is on the triplet therapy with chemo and NUBEQA starting in September last year. He's just finished chemo - the first cycle was the worst, then after a chat with the consultant the anti emetics were adjusted and he was much better for the rest, fatigue being the main issue. Hair loss didn't start till the second or third cycle. Chemo now finished and we wait for the consultant appointment to tell us how well it worked. Hope the chemo effects calm down for you.

Great that he's completed his Chemotherapy - All the best for his results when you have your appointment with his consultant.

Best wishes - Brian.

Hi downloaded 

If he’s lucky like me, his hair will grow back again, chemo can take a little while to get out of the body, being a Gleason 9+ myself, 

faigue is a devil plus tiredness, but he’s done the hard part, does he have any radiotherapy due ? I had mine a month or two after chemo let my body recover. 
Keep us informed he’s done well, lots of years in him

Stay safe

Joe

Hi.  Thank you for posting an update.  I had my second chemo yesterday so four more to go. Not too much of an issue with the first - bit aching legs, bit of a chemo mouth which sorted after day 10, but tea tastes creamy. Hair loss started at day 14 - mostly on the top and then it was the longer hair. Consultant phoned to confirm that bloods were ok for the second session. I asked about follow up scans after chemo finished.  He advised that this would be left for a period of time, as any improvement in bone metastases will take a while as the medications are not immediate, and I get that - I suspect that you’ll be advised the same.  PSA still coming down which is encouraging. 310 start, then, 9, then .97 and the one last week at .44.  Sleep has been affected by the steroids with some nights only 3-4 hours, followed by the odd six hours. I’ve mentioned the detail so other readers can see my progression with Gleason 9 (5+4), the same score as yourself. 

Hope all goes well with your consultant.

I would add that if someone tells you that someone else is on your case and you can be sure all is underway then ask them for the contact details of that someone else. Call them just to be sure they are on the same page as the person who told you they were. Also get the phone number of the secretary of the specialist. The secretaries are quite often the only ones sitting by a phone and can be super helpful.

We were told that there would be no further scans after chemo as they relied on the Psa test. Can't say I am happy about it but other than perhaps paying for a scan privately then not much else we can do.

Hi.  Just following up.  Have you met with the consultant yet ? My understanding is that NUBEQA, in working with ADT to prevent testosterone getting to existing cancer sites i.e. bones, enables bone skeleton to repair itself. That being the case it would be quite reasonable to expect a follow up bone scan to see the effect of treatment and bone improvement.  I also understand that it is likely to be at least three months following chemotherapy treatment before any bone improvement can be expected to be seen on a scan - I would like one to see that the treatment has worked - psychologically good for a patient.  A PSA number is just a number - just says you’ve got no testosterone.