I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error


hormone refactory - continued treatment next step

User
Posted 19 Sep 2015 at 20:29
Good news then Lesley ..long may that continue
xx
Mo
User
Posted 19 Sep 2015 at 23:30

Have a think about The Gambia Lesley - cheap, beautiful winter sunshine, happy people and good quality pharmacies just in case x

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 20 Sep 2015 at 19:33
Thanks Mo/Lyn
Lyn, was thinking of gran canaria and hadn't thought of gambia. Have Googled gambia and it does look beautiful and very reasonably priced.
Lesley x
User
Posted 14 Nov 2015 at 22:34
Hi to all you lovely people

Will start with the not so good news first - we didn't get away to any winter sun. Bob got a bit anxious about the flight effecting his next results (did reassure him it wouldnt) and we had some minor stresses with our 17yr old daughter. Felt it was better to stay at home.

So for the good news - we are 8 weeks post the high dose radiotherapy to prostate and bladder....drum rollllll. ........PSA down from 38.1 to 37.7 and ALP down from 158 to 103. The consultant is pleased with effects of the radiotherapy, so for now NO CHEMO!! Plan is to review blds in 2 months so we are pleased that he is also keeping a close eye on bob. Am sure this will give you guys in the advanced stages of this disease hope showing you an alternative effective treatment option.

Bob also has had his second zometa infusion given over an hour. He tolerated this much better than the first one. Instead of suffering 4 days of feeling quite ill he only felt off for 1 day.

And now for the madness. When Bob gets a good result he instantly starts planning holidays, which don't get me wrong, is lovely. It's the type of hols that worries me!! Hes looking at SKI-ING again!!! How can I tell him he can't go?!!! You men don't give us ladies an easy time!! Ha ha. It will be me that will be having a heart attack ;-)).

Wishing everyone well,
Lesley


User
Posted 15 Nov 2015 at 09:37

Hi Lesley, glad you are so upbeat and that your oh is as well.

Being positive is far better than negative, it stops the b*****d invader thinking it's got the upper hand.!!

Stay fighting it and long may you continue taking your holidays together.

Best wishes Chris/ Woody

Life seems different upside down, take another viewpoint

User
Posted 15 Nov 2015 at 10:50

Hi Lesley
It's certainly a roller coaster ride isn't it swhich you both seem to be handling the best way possible.

You give me much hope as I'm on a similar ride but a few years behind.
I started with psa of 235 with spread to pelvis and have been on Prostap & Enzalutamide since January this year. I did take abiraterone for the first 6 months but it was dropped after I had problems with ALT reading and then bowels.

I wonder if Enzalutamide is another alternative for Bob it's certainly helping keep my psa down at the moment and is usually offered after other treatments fail.

Maybe I'll see Bob at the next GNR?

All the very best and enjoy your holidays.

Paul

User
Posted 15 Nov 2015 at 11:42
Lesley
its great to see you posting and to hear that Bob is doing well. It was a shame about your holiday, Maybe you can get him to opt for a lazy beach holiday with sun somewhere close to home like the Canaries. If he is dead set on skiing the insurance quote might change his mind?!

Mick had a bit of an issue the first dose of Zometa but no problems at all with it after that.

Did you get all the warnings from your Onco about Zometa and dental treatment?

Hope you do get Bob to rethink the skiing,

xx
Mo
User
Posted 15 Nov 2015 at 21:03
Thanks for your kind comments.
Chris, best way to be is positive! We didn't expect to get this far in our journey, and consider ourselves very lucky. I tend to use the outlook of "as one door closes another one will open" and never give up hope.

Paul, maybe enzalutamide would be an option for us in the future. Doing the GNR was a one off great achievement and experience but not to be repeated so will just look out for you on TV.

Mo, I would be quite content with some canaries sun. Insurance quote put him off going skiing??!!! I would like to think it would but oh no mo, hes mad and going without insurrance(well anything related to the prostate). Thanks for dental info. Lovely to see you're keeping busy with all your travelling.

Lesley xx
User
Posted 15 Nov 2015 at 22:33

I was going to say that I would be tempted to let him book the holiday and just cancel nearer the time if necessary (it's only money). But now I have seen your comment about him going without cover for anything prostate related I am doubting his sanity 😳

Has he considered that if he fell and broke his leg, they would probably argue that the break was more likely because of the cancer and you could end up with some very expensive medical bills. My brother died abroad without insurance and it cost many, many thousands of pounds to have his body flown home.

Is he perhaps thinking that he would like to go skiing but do more of the après-ski and less of the energetic stuff?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 15 Nov 2015 at 23:21
Hi lyn
I admire my husbands determination to do all he wants to do but I am totally in agreement with you about his sanity!!
I have clearly told him of the risks of pathological fractures which he wouldn't be covered for, so he is fully aware.
We will book accommodation in advance, then either cancel nearer time or book everything else last minute.
My only saving grace is that he will become more eadily tired, as he did last yr, and will probably spent more time doing more (safe)apres skI activities. We also have the support of 16 friends/family with us.
Thanks lyn for your kind concerns of which I very much share.
Lesley x
User
Posted 16 Nov 2015 at 08:47

Then I think it is wonderful - what a marvellous love of life he must have. I hope it all works out well x

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 07 Jan 2016 at 14:51
Hi to all you lovely people.
Time for an update!!!
Well to start with we had a lovely family xmas and a quiet but nice new year. My new job transfer going well and working with some lovely people.
Bob has been feeling more tired and a bit off his food, feeling bloated after eating. Suspected maybe accumulation of side effects of medication or possible depression from the stress and worry the disease causes.
We've managed to avoid the need for chemotherapy for a lovely long time but unfortunately the time has come for a change in direction. Seen Oncologist today, PSA - 79(doubled in 2 months) and ALP - 200, bone scan shows further cancer activity. Plan - docetaxel 6 cycles to start in 2-3 weeks.Bob is gutted and very worried about The side effects he is going to suffer. He has asked me to ask what experiences good/bad you guys here have had.
I have to smile, bob asked the consultant if he could go skiing before starting chemo. You should have seen the consultants face. He very nicely explained the risks and said he wouldn't advise it! New holiday plan is much more sensible and to aim for a bit of southerly french sun on completion of chemo cycles.
Have been reading many of your threads, shed some tears with some of your trials and enjoyed smiling at your tribulations.
Sincerely wishing you all well.
Love to all
Lesley xx
User
Posted 07 Jan 2016 at 15:12

Hi Lesley,


 


As with all treatments, side effects affect everyone differently, you just dont know til you have the treatment. Dosages and gaps between chemo can be changed to accommodate severe side effects but then some men experience less than others. One way of looking at it is that chemo is going to knock the disease back hopefully and that in itself can be incentive to carry on ! Metallic taste in the mouth is a common symptom, many posters advise sucking frozen pineapple cubes during the treatment. Nail beds can become dry and sore so start moisturising finger and toenails daily with a good moisturiser, I used one specially for chemo, a blend of oils in a stick like a lip salve. Fatigue is very common, something that just has to be managed day to day if it is a problem, also, avoid anyone with a cold or similar infection at certain times, think it's a week after treatments as immune system will be weakened. Your chemo dept should give you a thorough discussion about all this. Do they have a 24 hour helpline you can ring with queries or concerns ? There are plenty of men on the forum who have had a relatively good experience of chemo so don't assume the worst. Very best of luck with the treatment. Regards,


 


Fiona.

User
Posted 07 Jan 2016 at 15:26

Hi Lesley,


Sorry to hear that things are not good at the moment.


I had 9 cycles of chemo and apart from everything tasting like rubber for about 5 days it was very doable.


I didn't get on with the high dose of steroids so i dumped them, managed to keep my hair with the use of the cold cap but lost it everywhere else.


My best wishes to Bob, i hope he finds the treatment bearable.


you never know he might be like Kev (irun) when he was on Chemo and start running marathons http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif 


Si x

Don't deny the diagnosis; try to defy the verdict
User
Posted 08 Jan 2016 at 19:42
Hi fiona and si.
Thank you so much for your kind replies.Have read your comments out to bob and he is very appreciative of the useful info you have given. I have read in the past a few threads on chemo but it's not easy to back track and find those threads.

This feels a very strange time for us and we have many emotions going on at moment. We're pleased we are getting good active treatment to kill the b•••••s. But knowing it moves to the next step of our journey is scary and a bit upsetting.

We are usually planning holidays and making holiday lists now. We will have put a delay on this at mo, although we do hope to do a southern france holiday hopefully in the summer on completion of the chemo course.

So for now instead of writing a holiday list we will write our medical list - thermometer, moisture cream, frozen pineapple. Am smiling now si, perhaps won't put marathon running kit on the list and just stick to walking in our comfy casuals!! Lol

Thank you again fiona and si, you are both very kind people. Will also thank you lovely readers for your kind thoughts.

Lesley xx


User
Posted 08 Jan 2016 at 20:31

Hi Lesley,

Sorry to hear Bob is progressing to the next stage on this uncertain journey. I still have the joys of chemo to come so cannot comment on the impact of it but do hope he can take it in his stride. Generally people seem to cope as long as the body can cope with it. Hope so because if it does it should be a positive outcome, I will be thinking of you both as you tackle this.

User
Posted 08 Jan 2016 at 21:41

Hi lesley
Met with oncology nurse for my 3mth HT jab different one from normal
We had a check re how my chemo was going
Biggest issue is the weight put on 1.5 stone
Still got a bit of hair left have only 1 more dose of 6 to go
Hair loss not to bad still have some on me head
Bit more fatigued then prior to starting chemo
Eating less also but making sure fluid level is good
Nurse said that I do not realise how well I have coped with the treatment
It was a treatment option i wanted and went into it determined to keep strong and focused
Have been odd times when i think otherwise but not many
Not sure if any of this helps but it is how i have been affected
Regards
Nidge

run long and prosper
'pooh how do you spell love'
'piglet you dont spell love -you just feel it'
User
Posted 08 Jan 2016 at 21:51

Hi Harmony, it isn't always horrendous - Stan was 79 or 80 when he had chemo and he breezed through it apart from the problem of all food tasting like metal :-( His biggest issue was that his wife banned him from going to the pub in case he picked up germs .... it drove him stir-crazy.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 09 Jan 2016 at 18:02

Harmony, my husband Tony had Docetaxel this time last year and didn't find it too bad. He didn't lose his sense of taste or stop enjoying his food, and he wasn't sick. He was tired at times, and lost what little hair he had, but remained in pretty good spirits throughout. He had some loss of sensation in his toes but that wore off once treatment had stopped.

Right at the end he picked up some sort of infection and we noticed a raised temperature, which triggered an urgent response from the hospital: he spent three days in an isolation ward having antibiotics, as his neutrophil count was dangerously low. Apart from that,nothing too alarming happened.

The actual infusion is not uncomfortable, just a bit boring. You sit in high-backed chairs in a room with various other patients all hooked up to intravenous drips etc, and the staff in our local unit are lovely. I used to drop him off there and go off to a local shopping centre, and come back to pick him up a couple of hours later. He was advised not to drive home in case he had a sore hand from the catheter, or the anithistamines they gave made him sleepy, but he hardly needed me there, he was fine.

I think the worst part of it was feeling that he was a patient all those weeks, and having to be careful about diet, hygiene, etc, and schedule things according to the ups and downs of the three-week cycle.

User
Posted 09 Jan 2016 at 20:45

This is a helpful description and makes it feel manageable if you are careful.

 
Forum Jump  
©2025 Prostate Cancer UK