An update on Dad

User

Posted 12 Mar 2018 at 18:46

So Dad is into his third week post chemo #1. Time seems to be moving so slowly. A lovely Macmillan nurse visited him today which was useful but understandably emotional. Tomorrow it’s bloods, Wed the consultant (who I will meet for the first time) and if all ok, chemo #2 on Fri. It’s been such a rollercoaster what with all the problems Dad has had throughout February with treatment stopping and starting and the hospital admission. He has ok days and not so good days which I guess is to be expected. It’s such a lot for everyone to get their heads round. I really really hope the chemo helps him and knocks it back for a while but I know to be cautious. Everyone seems to react to treatment very differently and I keep having to remind myself of this. Anyway I just wanted to say hello to everyone. I’ll update again as the week goes on. PenP x

User

Posted 12 Mar 2018 at 20:15

Good luck for Wednesday Pen. Hope you get some positive news.

Ann

User

Posted 12 Mar 2018 at 21:24

Hell PenP and thanks for the update. Good luck to dad for Wednesday

We can't control the winds - but we can adjust our sails

User

Posted 12 Mar 2018 at 21:43

Best of luck with results x

User

Posted 12 Mar 2018 at 22:55

Thanks for the update. Good luck for this week’s results Penp.

Ian

Ido4

User

Posted 13 Mar 2018 at 08:24

Best wishes for Wednesday, my OH was in a similar position 2 yrs ago and found the waiting between infusion 1 & 2 were the longest and most nerve wracking mainly as everyday was a new expireance .once dad starts to see his PSA lower it does get easier .
Keep us posted
Debby

User

Posted 16 Mar 2018 at 21:03

Dad and I saw the oncologist on Wednesday. First time I’d met him. If I’d been alone I may have asked him more things but wanted to remain sensitive to what Dad wanted to ask (and felt he could cope with hearing). However I was pleased that we were not rushed and all the questions Dad did ask were answered clearly. PSA started at 19 in Feb 2017, went down to 1.6 post radiotherapy then back up to 19 but down to 14 after chemo number 1. Bloods were ok so we proceeded with chemo number 2 today. After one aborted chemo then then the next almost aborted (all to do with fast heartbeat) he did really well today trying to keep calm and even though his BPM was 120 they decided to go ahead. He is so pleased. In and out within two hours. He’s had a funny taste in the mouth, fatigue and some hair loss but considering how quickly everything deteriorated in a short space of time I’m super proud of him because this is NOT easy at all. The consultant reiterated that it was disappointing to have such early reoccurrence but confirmed chemo was the best thing for Dad to try for now. He tried to talk about MSCC but we quickly moved on and I just said I’ll take the leaflets and read later. It’s hard for me to keep away from Google and wondering what the future holds. I keep having to remind myself that everyone is different. I’m having some counselling at the local hospice which is helping me cope with it all. If I can keep going I know that’ll help Mum and Dad. So it’s been cathartic to talk to someone. I still check this forum every now and then and am always interested to know how everyone is doing. Wishing everyone a peaceful evening. PenP.

User

Posted 16 Mar 2018 at 21:47

Wishing you and dad the best ,take care and look after Mum and yourself , google can inform but also crush you , keep asking and talking on this site and there are many helpful and knowledgeable people to help .
Best wishes
Debby

User

Posted 16 Mar 2018 at 22:11

PenP it is really important that you, dad and the rest of the family know everything you can about MSCC - it can come on so rapidly and is extremely serious. If the doctor wanted to talk about it, they must think that dad is at particular risk.

Re the metallic taste, have you tried freezing fresh pineapple for him to suck during the infusions?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 17 Mar 2018 at 11:30

I pulped fresh pineapple and made into lollipops. They helped but I don’t think anything will actually get rid of it. I found that the metallic taste came on several days after each infusion and lasted around 10 days or so.

Glad your dad got his second cycle ok after the problems with the first. The fatigue unfortunately is part and parcel of the treatment. Best to just give in to it when it comes on. There’s nothing to be gained by trying to fight it.

Dave

User

Posted 28 Mar 2018 at 19:10

Dad is into his second week post chemo #2. All being well, chemo #3 next Friday. We had a lovely (albeit short) walk on Saturday with a dog I’d borrowed which really lifted his spirits. I took a photo I was so happy to see him out and about. He has lost quite a bit of hair now. It’s weird how some side effects affect some and not others. He had another zolodex implant today. This was the first time a nurse asked him to sit instead of lie as she administered it and he said it went much better. So there is a tip for anyone having a HT implant!

User

Posted 28 Mar 2018 at 21:20

Best wishes and thinking of you all
Debby

User

Posted 29 Mar 2018 at 17:42

PepP,. It is all about creating a fold in the muscle into which this damned great needle can be inserted. Obviously, when sitting, the belly naturally folds a bit so the nurse was probably more easily able to grab the chunk of muscle needed, especially if your Dad is slim. Personally, I've stuck with lying on my back over the years and it has worked for me.

User

Posted 29 Mar 2018 at 17:42

User

Posted 08 Apr 2018 at 17:13

I’m pleased to report that Dad was well enough to receive chemo #3 on Friday. I took him and this time it was all pretty straightforward (even though his heart rate was still very high). We were in and out within two hours. We are starting to get to know the nursing staff now who are all absolutely brilliant at their jobs plus we’ve started to chat to other people receiving chemo (and their families). Dad had the same symptoms as before (crazy hiccups, a bright red face, plus feeling a bit wired from the steroids). This weekend he’s taken it really easy and is resting lots. His taste buds feel better this time (must be those lollies). The PSA was 16 before chemo#1 then 14 and now 9. So he is encouraged by that. I would like him to have a scan at some point to see what effect this chemo is having on the mets but the consultant seemed to indicate they’d rely on other means (PSA? Bloods?). This makes me nervous as he wasn’t scanned after radiotherapy and we were blissfully unaware for six months that the cancer was spreading.

User

Posted 08 Apr 2018 at 18:17

Good to see that this one has gone reasonably smoothly. I don't think looking at scans would tell you very much at this point - I don't think chemo makes tumours smaller or causes changes that you could see on a scan ... what it does is critically injure the nucleus of each cancer cell so that as it replicates in the future, it is weakened.

Imagine each met / tumour as a satsuma. Surgery cuts out the satsuma. Radiotherapy fries the satsuma. Hormone treatment starves the tree so that the satsuma doesn't grow and cuts off the sun so the satsuma never ripens. Chemo is like getting a syringe and injecting poison into the satsuma so that its insides shrivel up and go bad but you can't see that until you peel it because the skin still looks fine.

They will probably measure progress by his PSA (although chemo doesn't necessarily make the PSA drop the HT should) and other bloods such as his ALP which indicates how active the bone mets are.

Edited by member 08 Apr 2018 at 18:22 | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 09 Apr 2018 at 09:00

Thank you Lyn for explaining that to me, I really appreciate it and will pass on your message to Dad.

User

Posted 09 Apr 2018 at 17:25

PenP,

Lyn and I have disagreed about chemo reducing tumour size before, so I won't repeat my view, but where I am sure we would agree is that after three cycles is too soon to expect to see a radiological response, do I think your consultant is spot on. I reckon he would arrange a scan after six cycles, especially if the PSA keeps on its very welcome downward path!

Keep the faith!

User

Posted 09 Apr 2018 at 17:59

Thank you AC - I will see what the consultant thinks about a scan possibly half way through. I’ve not been able to ask as much as I’d like to (obviously respecting Dad’s wishes to not know too much) so I’m a little in the dark as to any previous scans/locations/sizes etc. Although I guess knowing isn’t going to help much. But yes knowing the PSA is going down is good news. I still don’t get this PSA business - Dad’s has never been higher than 19 but is extremely aggressive :o(

User

Posted 09 Apr 2018 at 18:08

Hi
Tony's psa was only about the same as your dads and he is gleason 9 t3b had spread to the seminal vasculars and was told he had a really aggresive cancer, he is still here 12 years after diagnosis and has been on and off hormones ever since, his psa did go up to over 50 a year or so again bit was put straight back on ht and it was down to 0.1 fairly quickly

regards barbara

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