It's a Start!

User

Posted 18 Sep 2015 at 07:26

Feeling like it's a bit real now. Had appointment with consultant and told PSA is at 40. We agreed to start chemo earlier than planned and first session started 9th October. As my SE have been minimal so far, touch wood, have been worried about next step but having been having lots of discussions with others decided that there's nothing to do but keep positive, fit and well.
I've found when I need to talk with partner about Pca, I do and when she needs to talk about it, we do and when we don't, we don't and get on with it. Trying to tidy Pca in a little corner of my brain and pull it out when I need to. I know i need to reduce work, which has been agreed with my partner and my business partners have been great and supportive. I know I need to keep strength up to reduce any tiredness and anything else that arises. Looking forward to doing more chores round the house!!

Anything else I should do? Anyone any advise on starting chemo and its effects?

User

Posted 18 Sep 2015 at 08:29

Freeze chunks of fresh pineapple to suck on during infusions - it helps protect your taste buds from too much damage.

Good news on the PSA front :-)

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

User

Posted 18 Sep 2015 at 08:45

Good luck with the rest of the chemo toast.
Hope the SE remain very low

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

User

Posted 18 Sep 2015 at 09:44

I've not posted mush recently and missed this post. I'm so sorry to read your story, I'm glad you've been able to sort things out with your now partner, many of us feel the need for someone to talk to, someone who loves us and cares about our wellbeing and it sounds like you have found someone who can be that person, good news.

The drop in PSA is magnificent, delighted to read that. I think the consultant is right to order chemo as soon as possible, you need that PSA to get right down and as soon as possible. I think you are lucky to still have some libido and function, my OH lost his right away on HT but after 39 years of marriage, it hasn't caused a rift just a feeling of sadness from us both. I'm sure Alahays will advise on any helpful tactics to keep it going.

On the subject of chemo, people have given you great advise and it's true that no one can predict how you'll cope with it but being younger will stand you in good stead.

My OH has advanced cancer too, it might help to know that even with a Gleason score of 10 he's approaching his five year point, something we thought we'd never see. Keeping positive is a good thing, but I must admit that when people said that to us at the outset I would secretly want to punch them! It's about quality of life though, enjoying every day and appreciating the good things, that's positivity and its wholly beneficial.

Anyway just popped by to say hello and wish you well on your treatment.

Devonmaid

User

Posted 20 Sep 2015 at 12:41

Many thanks for the tips all
Deveonmaid- who or what is alahays?

Steven

User

Posted 20 Sep 2015 at 17:06

Steven
good to hear from you again and to hear things are moving on at a pace and in the rght direction. PSA down by so much is a really great start. Going onto the early chemo is also considered to be the best move for someone with your diagnosis and staging. Some NHS areas have started to adopt this gold standard treatment as recommended from recently published trial results even though it has not got through the formal approval. Others sadly have not.

Several Men who post quite regularly have been through this irun and Siness are two and both of them are doing great. You could check out their profiles if you want to read more.

It sounds like you and your partner have found a really good way of talking about the PCa when either of you feels the need. I think it is good and healthy that you have times when you just don't need to.

I wish you all the very best
xx
Mo

User

Posted 20 Sep 2015 at 17:45

Originally Posted by: Online Community Member

Many thanks for the tips all
Deveonmaid- who or what is alahays?

Steven

alathays is a member on here toast and is often mentioned as a member whose profile is beneficial.

Edited by member 20 Sep 2015 at 19:07 | Reason: Not specified

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

User

Posted 11 Oct 2015 at 02:05

Well that's a start this week. Had my pre assessment mid week at the hospital which strangely brought it all home to me that it's all real. Nurse was great at explaining things, then it hit at the hair loss. I know it's a side affect and consultant said there maybe some thinning but nurse said, no it's going to go but you could try I cold cap. Showed me it and I thought way not. Also mentioned all other SE's which I now try seriously. Didn't really like the shape of the day ward and didn't imagine myself there for one moment.My mood wasn't great for next couple of days in build up although OH tried best not to show her stress too. I did buy some very good hats though.

First session was Friday and once I got there and in position it wasn't nearly as bad as I thought. Linked up and swilled around was fine and myself and OH just talked nonsense for 3 hours. The cold cap was the most uncomfortable thing ever and by end didn't want to do it again but have thought what's 3 hrs discomfort if it's my choice, so will continue. It been a couple of days now and no SE or anything and had good day mucking around with kids, doing chores, walking dogs, etc and trying to be positive. Kids went to bed, cooked tea, OH de-stressed will a couple of glasses of wine and in bed, me too much in head and can't sleep. I should be positive, my 21 day check list is all zero's at moment, no SE, psa down to 21.6 although was advised some hot spots on bones and CT scan was clear. So all good, right? Just can't help feeling it's all going too well and something is lurking round the corner. Think I'll do some ironing.

User

Posted 11 Oct 2015 at 06:02

Early days yet toast, and as usual for our members, a horrible position to be in but you are already looking into the positives.

Do you take the frozen pineapple sticks with you that Lyn often mentions? My grandson didn't lose his hair it thinned a bit and went like a brillo pad but it improved in time.

It's understandable that your wife was distressed, she'll hate seeing what you have to go through. You'll support each other I'm sure.

Good luck with the rest of it. Think of the end game, and what's a bit of hair (which will come back) if it helps kill the b****r.

All the best

Sandra

(PS my ironing builds up as it's a job I hate - I'll bring it round shall I ?)

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

User

Posted 11 Oct 2015 at 08:26

Hi Toast
I hope it continues to go well for you . Sounds like you're being very brave to me. Patrick Stewart has no hair and he commanded the Enterprise . So if he can do it .
Sandra I do the weekly ironing every Sunday . you could slip yours into the never ending bottom of the basket x
Chris

User

Posted 11 Oct 2015 at 09:53

Hi Steven,

Glad to hear the first chemo has gone well, stick with the cold cap it worked for me, but agree with you very uncomfortablehttp://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-foot-in-mouth.gif

Looking at the time you posted that is one side of chemo i didn't like, wandering round the house at silly o'clock.

now i think i have spotted a link, i do the ironing on Sundays. so for all you guys that get asked to do the ironing you can now say NO it gives you metastatic prostate cancerhttp://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-foot-in-mouth.gif

Hope it continues to go well for you

Don't deny the diagnosis; try to defy the verdict

User

Posted 11 Oct 2015 at 10:49

Hhhhhmmmm, John has ironed on Sundays for our whole life.

Toast, my father-in-law had no major problems apart from his wife not letting him go to the pub in case he picked up an infection. Fingers crossed you have an easy time of it too

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

User

Posted 11 Oct 2015 at 13:18

Hope it continues to go so well as this start has revealed. It varies so much person to person.

I wash on Sundays but let the streaks naturally fall from my clothes and only iron if I really have to!

User

Posted 16 Oct 2015 at 19:54

I didn't do the frozen pineapple Johsan as I couldn't face it with the cold cap but will try next time. OH happy that the ironing fairies appear to have worked sometime during the night, she's hoping the vacuuming pixies will also appear sometime.
I know it's early but my SE checklist are all zero's at the moment. Happy days. Off to Northumberland for mid week break for birthday. I feel a good cigar (one only) but several good malts to celebrate!!

User

Posted 17 Dec 2015 at 18:14

Hi All,

Appears that Christmas is coming upon us and all the festivities are about to start. First Christmas with pca and almost seven months since dx - time sure flies in doesn't it when you have times on your mind! Thought I'd try and get a few issues out of my head before next week.

Had my fourth chemo session last week which has gone fine. Still got hair on my head, although seems to almost have disappeared elsewhere. My PSA has been dropping but only came down 0.5 to 14.7 from previous. Dr W says its nothing really to worry about as its still dropping and still in treatment. I am worried it should be lower. anyone any thoughts?

Getting tired now but think a lot to do with the hot flushes and night sweats which keeps me awake and interrupts the sleep, then I start to think about things when then keeps me awake more! Anyone know how to control the sweats, apart from keeping cool during the night with light covers, fan, cold water?

Any advise would be greatly appreciated and wish everyone well over the festive period

Steven

User

Posted 17 Dec 2015 at 20:44

Steven
Hi
First things first 4 chemos down the line with any PSA drop is ok. When the cancer actually responds to any treatment it fights like mad to re-establish itself and can push PSA up.

As to hair loss, it is common to lose all body hair and retain head hair..no idea why but someone will know.

Tiredness is also common your blood work might show anomalies all of which cause fatigue.

As long as you feel reasonably well most of the time then little else is important right now.

Best wishes
Xx
Mo

User

Posted 25 Jan 2016 at 19:37

Hi All,

Coming up to last chemo session and pre assessment mid week. The consultant had changed in the unit so meeting new one for first time. So ok, treatment going well, PSA down to under 10, SE flushes, sweats, tiredness and majority loss of libido but not always. Iam assuming I will get Bone scan and mri scans to checks mets etc, in fact I really want them. If all things well then it's continue HT injections and monitor PSA. I guess that the best outcome I can wish for.

However is there anything else I should be asking? Guess I'll only know once results are in. Does anyone else have recent experience of finishing chemo and then having the next step?

Anything would be helpful!

Cheers

Steven

User

Posted 26 Jan 2016 at 16:21

Hi Steven
glad to hear the chemo has progressed pretty well, PSA less than 10 from a 3 figure start looks good too.

I am not up to date with latest Oncology post chemo, your post got caught up in weekend traffic so I am replying to move you back up the board hoping that one of our members will post you something more meaningful.

My very best wishes
xx
Mo

User

Posted 04 Feb 2016 at 13:17

Well, that was the last chemo done and really don't know what I am feeling. The treatment was better then I thought, easier in fact. The chemo nurses were brilliant and actually made the days enjoyable. what's not the like sitting there chatting, having cups of tea and biscuits, lunch and reading time, very chilled. Think I am actually going to miss the routine.

Cold cap worked well and still have hair, rest seems to have disappeared, taste buds fine, no sickness, finger nails have suffered a wee bit and got tired as treatment went on but it was very manageable. Mentally going through it, was ok as it gave me focus on what is happening. OH gives me a talking to every so often when I got down and continued with a sex life albeit less than before chemo. I thought it was affecting me but then I agreed with her that most of it was head issues. I haven't changed my life style much - eating less red meat (apart for the South African restaurant I went to with friends - Mixed grill was enormous), more veg and fruit, less sugar, fruit juices and cut out other crap I would usually eat between meals. Weights gone up, but it winter. I still enjoy my italian red wine and malt whiskey, although less of it and cheese with biscuits by the fire. I am still working which is great for me and only take Fridays off, which gives a great weekend for walking, gardening and generally mucking around with kids. They haven't noticed anything going on apart from that I sweat a lot (with flushes) mostly when I've been cooking! so, all in all I can't grumble. - should I?

I now have 2 months before I see new consultant and MRI and Bone scans before that. Its a long period to go through without any information or focus. I do worry how it will affect me mentally and I will revert to what if this happens or doesn't happen, what can or can't I do. I feel its like being first dx again and having all the uncertainty. But I will cope and just get on with it, no choice really. This forum is great and has brought me a wealth information and advise from others but sometimes when I look at other peoples journeys I do wonder, shite, is that what is ahead, can I cope with that, are my strong enough. I just want the treatment to work and never have to think about it again for 10-20 years. I know some rain must fall, but I hope its just a short shower!

Just trying to get stuff out of my head and I know really that I am lucky compared to many others. Better do some work now!

User

Posted 04 Feb 2016 at 13:26

Hi Toast
That was a brilliant post and totally sums up your bravery and feelings and lifestyle choices. I think we are all suffering just as much mentally as you say , as well as physically with the cancer. You have echoed how I feel inside. Yes there are others worse off than you , but at the moment you are worse off than me ?? We are all here to help and support each other so please keep posting.
I salute you and hope the best for you
Chris

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