Straight into Advanced PCa. How on Earth......?

User

Posted 11 Oct 2017 at 18:42

Mel,

I really hope the RT works as well for B as it did for me and provides him with some relief.

If you haven't looked at it yet my thread on my experiences with Docetaxel may help you both to prepare for chemo. I'll allow you to skip all the bits about beer and music.

http://community.prostatecanceruk.org/posts/t12197-Docetaxel-Chemo---the-highs-and-the-lows#post152202

As far as all B's horrendous bone pain goes, keep an eye on my Radium 223 thread for how this helps, or not, with my bone pain (my bone pain is nowhere near as bad as B's).

http://community.prostatecanceruk.org/posts/t13243-Radium-223---the-highs-and-the-lows#post169820

David

User

Posted 11 Oct 2017 at 19:01

Oh Mel, what wonderful friends you have and how much they must care about you both. Moments that you recently shared are what memories are made of and will still be there for you in the future. I'm so glad you accepted the gesture and the love that went with it

Edited by member 18 Oct 2017 at 15:43 | Reason: Not specified

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

User

Posted 11 Oct 2017 at 19:17

Mel, what a lovely gift from a friend who obviously loves you both. Quite right to go now, sounds like you had a great time and a few laughs. Great memories. Hope all goes as well as possible with treatment. Best wishes, Ian.

Ido4

User

Posted 12 Oct 2017 at 06:56

All the very best wishes Mel with your ongoing journey together

Your positive energy is an insparation

Regards

Dave

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"

User

Posted 12 Oct 2017 at 23:36

Wow a trip to Venice life and friendship has a strange way of coming up trumps just when you need it.

So glad that your new Onc nurse is coming up trumps Trevor’s Angel Claire actually saved his life diagnosing his Sepsis .

Somewhere on here there is a comfort blanket kicking about if you need it just shout of course it can’t cure anything but for some it helps to snuggle up in and just feel surrounded and warm .

David is right Raduim may well be an option for bone pain Trevor started last Dec and has had great results.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 18 Oct 2017 at 13:54

Thank you all for your lovely replies. B had radiotherapy last Thurs/Fri & felt fine until the tiredness & increased pain hit on Sunday. Monday's blast made him feel a bit queasy & he started being sick yesterday morning. The main issue is keeping down pain meds & enough food to take them with. Last night was the worst, vomiting repeatedly even tho he’d only had water, so he’s asleep next to me now. Last RT this evening & although we’ve been told the side effects will probably reach their max on Thurs/Fri we hope to have a restful weekend with Darling Daughter off Uni hopping again.
We’ve been overwhelmed by the wonderful care at Poole's Cancer Care Centre & the comradery of those in the RT waiting room. The joy of watching someone ring the big brass bell as they leave from their last session & the way it suddenly feels very important to know who has how many days left.
I’ve arranged a few days away just before chemo prep starts. A chance to see some old mates of mine, take the BoyChild out for lunch (it’ll be 7 weeks since we deposited him in his digs at Aston Uni. Can’t wait!) & I’ve kept a day to do nothing or at least just be me. Feels rather selfish so soon in what we hope will be a long (& relatively healthy) journey but we prepare for the realities while living in hope.
Onwards & upwards.......

User

Posted 18 Oct 2017 at 13:57

Originally Posted by: Online Community Member

Mel,

I really hope the RT works as well for B as it did for me and provides him with some relief.

If you haven't looked at it yet my thread on my experiences with Docetaxel may help you both to prepare for chemo. I'll allow you to skip all the bits about beer and music.

http://community.prostatecanceruk.org/posts/t12197-Docetaxel-Chemo---the-highs-and-the-lows#post152202

As far as all B's horrendous bone pain goes, keep an eye on my Radium 223 thread for how this helps, or not, with my bone pain (my bone pain is nowhere near as bad as B's).

http://community.prostatecanceruk.org/posts/t13243-Radium-223---the-highs-and-the-lows#post169820

David

Oh, I have been following it all, David! Thank you for being so diligent in recording your experiences. B will start reading while I’m away, he doesn’t want to just yet. But you already have a follower/fan/admirer in me 🙂

User

Posted 18 Oct 2017 at 15:46

Nothing selfish about it at all Mel. If you don't look after you (and that includes a little break to re-charge your batteries) then you can't give your best looking after your man

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

User

Posted 18 Oct 2017 at 21:47

Oh Mel ,

What can I say it’s a hard road we tread if you have followed my posts you will see I try and give the Ups and the lows in a honest but humerus fashion ! But honestly am I laughing , heck NO

Life on the pca roller coaster is hard and the longer the journey the harder it becomes .

If you can and it’s possible take a few moments for yourself, regroup your strength and gather those people around you that have your back . Treasure those people that will hold you up in times of need.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 18 Oct 2017 at 23:34

Hi mel i realy hope things improve regarding your oh,s pain and hope the rest of his treatment goes well your in my thoughts in the middle of this rollercoaster awful p/c journey, were just begining ours even though it seems to have been going on for months, hesbonto 2nd zoladex injection at present then the plan is high dose brachytherapy just before xmas then 23 sessions of external radiotherapy to pelvic lymph nodes, so realy just getting our heads around the side effects of zoladex a few moody moments and starting with erectile loss of libido etc, but small things in comparison to the things your dealing with, my heart goes out to you mel, you need time for you to recharge yourself and just take a minute to breathe, its not selfish at all you cant run on empty mel,and you need to be well to be strong for you both, your husband will probably be pleased that your taking a tiny bit of time to recharge and do something for you mel, if hes anything like mine who doesnt think it should be me whos worrying about him, or as he says "i shouldnt be carrying his sh-t on my shoulders" i tell him its OUR sh-t to carry not just his haha..take care mel of you and yours, enjoy your small bit of time..jo.xx

User

Posted 29 Nov 2017 at 14:18

Is t it amazing how our normal changes so much so quickly? I’m going to use that as my excuse for not updating for so long!

B completed his RT without getting too tired or sick which was a blessing. It definitely helped as both the pain in his R hip & pelvis is still better than before & the instability that he felt has gone. His walking is therefore much improved.

Monday is Docetaxel round 2. The good, no, bloody brilliant news when he had round 1 was that in just three weeks of having his first Zoladex his PSA had dropped from 269 to 99!! I cannot convey the relief verging on joy that news brought. I know 99 is still high but a 67% drop in 3 weeks is, we feel, rather fab. The main side effect of the chemo has been a very sore mouth & throat making eating very uncomfortable and causing a new range of nighttime noises. The nausea was short lived & controlled with tablets, no need to get the District Nurse out for injections. This morning B woke to find that his hair is starting to fall out so has had his hair cut & unpacked the beanie hats I bought for him. Thankfully, selfishly, I rather like bald men although the fact that his facial hair also seems to be abandoning him brings more trepidation - in 28 years together I’ve never seen him without his beard & moustache! Keeps us on our toes though.... Round 1 was on Monday 13 Nov. Obviously, he didn’t go into work later that day & took the Tuesday off too. He worked normally for the rest of the week. During week 2, in preparation for the dreaded white cell drop, he worked mainly from home, only going into the office for the odd meeting once he knew that the people he was meeting were well so not going to sneeze on him. This week, week 3 has been a mix of Home & Office. We’re so grateful that his employer is happy for him to work flexibly.

I had my days away, seeing BoyChild & meeting his new girlfriend, seeing friends & having a whole day to myself where I allowed myself to feel without stifling emotion. It was had but useful as I felt stronger coming back to tackle the Chemo Monster with B.

So we’re doing well. The freezer has plenty of ice cream in it ready for the mouth to kick off again (today B has eaten chocolate for the first time in almost 3 weeks, so he plans to eat chocolate & drink beer all weekend!). We know that round 2 will probably be harder on him but we are stubborn & not easily cowed. Round 3 should be on Christmas Day & we're glad that he will have it on the 27th rather than the 24th - hopefully he will enjoy eating with us. Well, once the kids finish work or possibly on Boxing Day!

Onward & upward,
Mel x

User

Posted 29 Nov 2017 at 16:09

Not sure about the ice cream but have you packed plenty of fresh pineapple chunks in the freezer for him to suck during the infusions?

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

User

Posted 29 Nov 2017 at 16:30

Hi Mel, good to hear your OH is handling the chemo well so far, I’m just about ready for cycle 5 next week. Main problem I’ve found as I’ve gone through the cycles is tiredness, it creeps up on you without you knowing, also a couple of minor nose bleeds - I haven’t lost my hair though which seems strange, pity I hadn’t got much in first place.

All the best

User

Posted 29 Nov 2017 at 21:34

Ahh Mel ,

A lovely update and just approaching Xmas , keep fighting and keep kicking Arse .

You can do this .

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 29 Nov 2017 at 22:43

Hi Mel

I’ve only just caught up with your story, it’s so hard to read, what a roller coaster for you all. Good news that the chemo is doing it’s work, please keep your man safe from the sneaky germs, work isn’t worth the risk in my opinion, but it’s every one’s own decision to make.

My hubby has been going through this for seven years nearly, though his mets were not as extensive as B’s they are moving now and he is having Radium 223. Seven years ago, “early”chemo wasn’t protocol so he hasn’t has chemo yet but I’m sure it’s on the cards. His PSA is rising fast on Radium 223 as it doesn’t prevent it rising.

We would all give the same advice, I think, live life to the full, as much as is reasonably possible, enjoy your time together (as it’s clear you are), and live in the present. I must admit that seven years of cancer and it’s affects have had an impact on me but I’m grateful to still have my beloved with me, albeit it’s not always been much fun for him.

Your children sound very well balanced and its great that they are carrying on with their lives, it really does help.

With Love

Devonmaid xx

User

Posted 29 Nov 2017 at 23:45

Glad to hear OH chemo is going well ,we went through a similar journey last year and so far PSA has remained at undetectable,Gary is now on stampede trial and still working full time . The main side effects are fatigue and sore Achilles,but by continuing to work helps to keep his mind focused .good luck for the future sessions and enjoy Christmas with the family .
Best wishes
Debby

User

Posted 30 Nov 2017 at 09:07

So glad to read your update Mel.

What a relief for you both.

Bald head and bald face :) He might look different but he's still your man eh!

I'm sure it's relief in a way because it means the chemo is doing its stuff.

Best wishes for a continued improvement

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

User

Posted 30 Nov 2017 at 11:17

So pleased for you all mel that things are going well with the treatments long may it continue.jo.xx

User

Posted 30 Nov 2017 at 15:24

I am very pleased for you Mel.

David had a buzz cut before starting chemo and I must say I thought it rather suited him.

Do try the frozen pineapple chunks. David alternated these and plain water ice cubes throughout each chemo session and did not have any mouth problems. I agree with being very careful during the low resistance period - monitor temperature regularly even if he doesn't feel hot - check with the chemo nurses at what level you should be calling them for help.

Have a good Christmas with the family.
Linda

User

Posted 04 Dec 2017 at 12:53

Hi Mel
Just reading you and B's story. Thank you for sharing and I feel I know you guys already and would want to be friends:)
Docataxel was not easy for me but one bright spot was that after losing all my body hair, my head hair grew back really strong, and a bald spot that I had appearing at the crown filled in and disappeared. So there you go, chemo cures baldness :)

I now only shave every few days and to be honest that is actually quite nice.I'm looking at another form of chemo two years down the track. I was diagnosed with extensive widespread bony mets and tumors in the lymph nodes Nov 2015, major pain was the right hip and pelvis area, so quite similar to B..

It has been a roller coaster but I have had so many great memories over the last two years and I'm sure I have many more to look forward to.

One thing that seems different where I am being treated (New Zealand) is that we move to opiate based pain treatments very quickly. For me this has been fantastic. I take regular paracetamol and Oxycodin (slow release) with pretty much unlimited access to Oxynorm (Fast acting) for pain spikes. No Tramadol, codeine, amitrip, ibuprofen (was using but advised against long term use) etc. Perhaps not for everyone,but I swear by it, only side effect is constipation which can be managed.

I have also had 6 RT treatments targeting different parts of the spine, in each case scans (and pain) show visible improvement, although I think this is probably only relatively short lasting.

Best wishes for the future and treasure the good moments, there will be many.

PS Great to hear about the kids too, you must both be very proud of them

Martin

"And Rocky said, doc it's only a scratch. And I'll be better, I'll be better doc as soon as I am able"

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