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

User
Posted 24 Aug 2017 at 23:42
This is pretty much a copy of our profile update as I can't write it any other way.

Where we're at as a family - both of the kids know now. Son (BoyChild or BD) was told just before we had a week away in Northumberland at start of August. He's 19, just got into his first choice Uni so off on his adventures mid Sept. Coping well with news. Daughter (DarlingDaughter or DD) told a week ago after she'd got home from a months charity work in Ecuador. She's 17, mid sixth form, a worrier but coping ok. Husband, B, is amazing. Nuff said! We're a close family who talk lots & are v close. We're strong, thank god.

Today we got the results of the MRI, biopsies & Bone Scan & tbh my head is spinning.

MRI shows lymph node involvement in the pelvis.

Biopsies had 80-92% of each of 12 cores positive for cancer, Gleason score 4+5 so 9. Spread to seminal vesicles but not bladder etc.

Bone scan was the biggest shock. Mets pretty much everywhere except right arm, most of legs & lower left arm. Pelvis shows symphysis pubis bilateral mets with right upper & lower rami all black. Iliac crest also bad with other mets throughout. Whole spine showing mets inc cervical spine. Rib mets both sides (I keep trying to count them but loose my sh*t each time). Both scapular, both shoulder joints. Clavicals both black on Scan. Concern re left upper humerus as large mass showing so further scans to assess as 'impending fracture' site. Also possible met in head of right femur.

So we're in shock. Kind of expected mets in hip & possible shoulders as he's had what were treated as two frozen shoulders over recent years & hip pain, but the extent of mets has floored us.

Next steps - referral to Onco to talk about chemo. Chest & abdominal CT's or MRI's to look at lymph nodes & closer look at left humerus (naturally, OH is left handed!). Continue with HT every three months, so next lot mid October. PSA levels checked with HT so no news yet.

Had hoped, with admittedly no basis, that HT would be enough for years.

Positives - pain has reduced greatly since HT started & he's more energetic than he has been all year, so not falling asleep at 7.30 every evening. Most of the time he feels absolutely fine so hard to fathom that he has advanced cancer. Not really asking questions but welcome any comments with thanks.
User
Posted 26 Aug 2017 at 17:04

Thank you all for your replies & care. Yes, unfortunately there are so many on here in the same boat & while I wouldn't wish this on anyone (Trump maybe but that depends on what day it is!) I can only thank all of you for the inspirational posts, advice, humour & realism. I go from fine to in pieces. Buying cards yesterday & something caught my eye - I love the colour red & it was a boxed candle. So far so good, then I realised that it was a Ruby wedding anniversary candle & lost my sh1t as I thought that we might not/probably/maybe won't get there. We've been married for 26 years so I know we'd need a miracle or cure to get that much time together. That hurts. But I know I'm blessed as I can hand on heart say that we have a solid, happy, loving relationship & this will not break us. The things all of you have shared are now in my armoury so thank you from the core of me. I have a tattoo that I got to remind me of the good things in my own fight with disability & chronic pain. It says 'Weeping may endure for a night but joy comes in the morning' from Psalms. Every day we wake up is a gift & a joy. This has become so much more than just that now. Maybe it should be my tagline?!
With thanks (& a little joy)
Mel

User
Posted 11 Oct 2017 at 10:26

I’ve started to type an update so many times. Either I have no energy left, things change so I have to start again or like today, my carefully crafted piece I did in Notes gets eaten!

So where are we. Oncology appointment went well. B starts 5 days of targeted radiotherapy tomorrow on his right hip/pelvis where the original pain started & generally he has pain daily. Then 10 sessions of docetaxel from 13 Nov, one every 21 days. Onco thinks he will manage 6, maybe 8 but obviously he wants to manage all 10. Onco not too worried about small PSA drop. Now have his nurse as B's named nurse which is fab as the last one was bloody hopeless. She’s already given more support than we had before which is great as things are not going well.

B has continued to have new hotspots flare up, matching bone mets on the scan & leaving him exhausted & now taking tramadol as often as he can. Sciatica with back pain & left iliac crest being the latest. Onco agreed that having a testosterone level to use as a base for during treatment was a good idea (I kinda demanded that it was done) & I’m glad it was done. Yesterday B got the results - 21.6. Normal. Where they’d expect it to be without HT. I wanted to scream “l ****ing told them the HT wasn’t working!” He starts Zoladex asap but we know that this is not a good sign. I barely slept last night as I was just impotently furious. Poor choice of words maybe as despite his T being normal the ED started within a week of his Prostap injection.

But to end on something more positive! We spent last weekend in Venice 😊😊. A dear friend from B's Uni days came to stay & as it always does, talk turned to holiday plans (usually theirs). I said one thing I want to do is go to Venice with B so we were planning it for in a years time. Asked why so far away I admitted that we can’t afford it before then but it gave us something to aim for. Over breakfast the next day we were handed an envelope that said ‘For Venice. Sooner rather than later.' It contained a cheque for £2000. There were so many tears, both of gratitude & in recognition that sooner might be a good idea. We booked it straight after the Onco appointment as we realised that if we didn’t do it soon it could be 7 months before we can think about travel. The added beauty was that it meant we were there for my birthday on Saturday. We didn’t plan anything, just played it by ear to leave time for B to rest from the met pain & me to rest from my own chronic pain. Didn’t think about how many steps we’d have to climb/descend & how getting about with a crutch (me) would be a challenge! But returning to the hotel wasn’t a hardship as it was just two bridges from San Marcos, stunning views across the basin & our room had the biggest round bed we’d ever seen!! Once we stopped laughing at that we noticed the spa bath which we both made good use of for pain relief. So it couldn’t have gone better, stunning sunshine, great food (even tho B feels sick most of the time) & other friends had the nicest bottle of Italian wine we’ve ever had (we used to be major good red wine fans) & a huge box of chocolates put in our room for my birthday.

B's T results show that our wonderful friend's timing couldn’t have been better. Whatever happens now I’ll always have Venice, precious memories & laughter that will carry us both thru the coming months because we’ve sworn to return, somehow. A mixed post, I know. But thank you for reading, for positive thoughts & light. Mx

User
Posted 26 Aug 2017 at 12:07

Ok tough news and sounds as if the bone mets are extensive. Good news chemo is first line of treatment in the protocol now so look at SiNess profile for example. Similar extensive bone mets but early chemo and other stuff and he is still going strong. There are no guarantees here each cancer is very individual but with a good treatment plan and hopefully good CT result there is plenty of time ahead. I am in my sixth year with bone mets and still here. I am on HT plus enzalutimide, plenty of ups and down but staying positive. The protocol when I was diagnosed was chemo was used at the later end of treatment so it's still in the box for me.

Adjustments as a family will take time, give yourselves that time, get into the treatment and see where it takes you. Don't over-think the next steps it all frustratingly takes time to get a clear path. But you will have time so enjoy things too as best as you can.

There are lots of us here on this journey, nobody wants it but it's where we are and we are all here to support, so ask questions or just come for a rant or a scream. Good luck.

Show Most Thanked Posts
User
Posted 25 Aug 2017 at 17:39
You have a lot of information to take in after scans, biopsy so far. It is a steep learning curve, I cannot offer much in the way of advice but at least HT has started and reduced pain. PSA result to follow. Given that pain is greatly reduced I would think the HT is doing its job. You are also engaging with the medical profession and I would imagine you will see an oncologist fairly soon to discuss an overall treatment plan in addition to the hormone therapy. There are many on this forum who will be able to give you further words of comfort and advice. You have done all you can thus far. My thoughts and best wishes with you and your family. Ian.
User
Posted 25 Aug 2017 at 19:06

Have a look at Allisters profile , he is no longer with us but what a fighter,
it will give you hope


alathays


Hero member
Thinking of you both
Barry

Edited by member 25 Aug 2017 at 19:42  | Reason: Not specified

User
Posted 26 Aug 2017 at 07:31

I've been reading your post FB and I do feel for you.


I'm sorry I can't offer advice but just wanted to let you know that you are not alone in this (Well, you've already discovered that eh?)


Keep strong. Hard I know but I hope life gets a little easier once treatment is in place.


*******

Edited by member 10 Sep 2017 at 09:52  | Reason: Not specified

We can't control the winds - but we can adjust our sails
User
Posted 26 Aug 2017 at 12:07

Ok tough news and sounds as if the bone mets are extensive. Good news chemo is first line of treatment in the protocol now so look at SiNess profile for example. Similar extensive bone mets but early chemo and other stuff and he is still going strong. There are no guarantees here each cancer is very individual but with a good treatment plan and hopefully good CT result there is plenty of time ahead. I am in my sixth year with bone mets and still here. I am on HT plus enzalutimide, plenty of ups and down but staying positive. The protocol when I was diagnosed was chemo was used at the later end of treatment so it's still in the box for me.

Adjustments as a family will take time, give yourselves that time, get into the treatment and see where it takes you. Don't over-think the next steps it all frustratingly takes time to get a clear path. But you will have time so enjoy things too as best as you can.

There are lots of us here on this journey, nobody wants it but it's where we are and we are all here to support, so ask questions or just come for a rant or a scream. Good luck.

User
Posted 26 Aug 2017 at 17:04

Thank you all for your replies & care. Yes, unfortunately there are so many on here in the same boat & while I wouldn't wish this on anyone (Trump maybe but that depends on what day it is!) I can only thank all of you for the inspirational posts, advice, humour & realism. I go from fine to in pieces. Buying cards yesterday & something caught my eye - I love the colour red & it was a boxed candle. So far so good, then I realised that it was a Ruby wedding anniversary candle & lost my sh1t as I thought that we might not/probably/maybe won't get there. We've been married for 26 years so I know we'd need a miracle or cure to get that much time together. That hurts. But I know I'm blessed as I can hand on heart say that we have a solid, happy, loving relationship & this will not break us. The things all of you have shared are now in my armoury so thank you from the core of me. I have a tattoo that I got to remind me of the good things in my own fight with disability & chronic pain. It says 'Weeping may endure for a night but joy comes in the morning' from Psalms. Every day we wake up is a gift & a joy. This has become so much more than just that now. Maybe it should be my tagline?!
With thanks (& a little joy)
Mel

User
Posted 10 Sep 2017 at 06:54

Maybe I spoke too soon. B had his humerus X-ray a few days after my last post & his CT Scan w/ contrast on 4th Sept. No news on those yet but we know it all takes time. That said, we're a bit alarmed & concerned that it has taken until Friday (8th Sept) to get an Oncology appointment & it isn't until 18th Oct! That'll be eight weeks after we were told he needs 'early' chemo. Is that typical? B's named nurse has said that the local hospital, Dorchester County Hospital, holds no sway over this as the consultant is at Poole General.

The worry isn't helped by what feels like a deterioration in B's health. When I last posted B's pain had all but gone. When it did flare it was controlled with ibuprofen, he had his energy back & felt better than he had all year. We took this as a sign of the HT working & shrinking the mets. The next round of HT isn't due to start until mid October.s Two weeks on & Ive just given him his first dose of Oromorph. Over the last week the pain came back in his hip & pelvis & seemed worse than before the HT, meaning he left work early on Friday which isn't like him. Not only that - he has been really struggling with pain in his left shoulder & collar bone, that's so close to the large met in his L humerus & his L collar bone is also black on the bone scan. The fatigue is also back. All of which makes us wonder whether the HT is having any effect? So off to the doctor Saturday morning to talk about pain management, B expecting a slow increase in meds from his current 10mg Amitriptyline which no longer helps. What the GP did prescribe was an increase in Amitrip' to 20mg, Naproxen (can't remember dose) & Oromorph.

The last one shook B to tears as he said he equates that to end of life pain management, not a month after dx.

So we were hoping to not need that for a long time, hoping the increased Amitrip' plus Naproxen would be enough. Not even 24hrs later I was pouring out a plastic med spoon of the stuff for him. He was in pain all yesterday & was groaning in his (broken) sleep. Waking for the toilet his face was twisted with pain & he agreed to having the Oromorph. The most acute pain is coming from his collar bone near the sternum & it looks red & slightly inflamed. So what do we do?

My feeling is that I should take him to A&E (once visiting friends hit the road at 12) as I wonder whether he could've broken the bone? He carries a fairly heavy backpack each day on his left shoulder & neither of the other meds touched the pain. Even if the bone is intact, would a visit possibly speed up the process of seeing the Onco, Should he have radiotherapy before chemo to deal with the bone pain at these sites?

Tbh, I'm scared. This is all going too fast. Any advice/comments will be gratefully received. Thank you all again for the wonderful support you've already given. I'd be lost without you lot!

Mel

User
Posted 10 Sep 2017 at 08:35

Hi Mel I've only just read your profile. I can't say how sorry I am to hear how rapidly this has happened for you. I'm only 50 with a 7 year old son and will have what your other half has to come , me now being on an incurable path. If it was my wife I'd be in A&E right now and politely but firmly insisting that pain management gets sorted asap. I work in a care home and I can't believe how much pain some people seem to be in. Is it necessary ?? I told my wife when I get to that , that she can wrap a large shovel round my head. Please please go and insist. So sorry x


If life gives you lemons , then make lemonade
User
Posted 10 Sep 2017 at 09:15

Mel,

I'm suffering shoulder pain, although not anywhere near as bad as B, so I can understand a little of the way he feels.

Practical measures:

1. Get on the phone to the Onco's secretary tomorrow. Tell him/her what's happened and tell him/her you are desperate and please can the Onco see B ASAP. If necessary, follow up with repeated calls sounding even more desperate. Don't be afraid to cry whilst on the phone to him/her, it would take a very hard hearted person not to respond in these circumstances.

2. Yes go to A&E although they will probably only try to deal with the pain and will say B should see his Onco. I doubt they will be able to speed that up, 1. above is more likely to do so.

3. Yes RT can be done before chemo, I had just that last October and it sorted out my shoulder until July this year when it started getting worse again. I started chemo just a few weeks after the RT.

4. Ask your GP to refer you to the local Hospice, they are the experts in pain management.

5. Has the GP taken bloods and checked B's testosterone level? That will tell you whether or not the HT is doing it's job.

I really do feel for you. I am following in your footsteps.

David

User
Posted 10 Sep 2017 at 09:56

I second all that the others have said Mel, especially the hospice bit.

I know that your other half will panic at the thought of approaching a hospice so quickly so you would need to emphasise the pain management bit quite strongly.

We can't control the winds - but we can adjust our sails
User
Posted 10 Sep 2017 at 11:40

Okay, deal with the issues systematically. I would attend A&E and say that you believe his collar bone is broken - it shouldn't be red and inflamed just from the mets so you need an x-ray.

Second, are you sure that the prostate in July was a 3 month dose? I realise that you have been told he is on 3 monthly, but usually the first injection is a one month one in case of any serious reaction, in which case he was due his first 3 month injection 3 weeks ago. Phone the GP practice tomorrow morning and ask them to confirm how much he was given?

If it wasn't for the pain coming back, I think the onco appointment makes sense - gives a good few weeks on HT to see how the cancer is responding. 'Early' chemo isn't about having it urgently after diagnosis; it is about giving chemo to help the HT be more effective rather than what used to happen which was giving chemo at the end of life when everything else had pretty much failed.

However, phoning the consultant's secretary or your nurse specialist if you have been allocated one, and telling them how quickly things seem to be progressing may get you an earlier appointment.

On the diagnosis letter, does it say that he has adenocarcinoma?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 11 Sep 2017 at 02:31

Most important bit first; his clavicle isn't fractured. I cannot tell you how huge the relief was to hear that. So yes, I got him to A&E. Once I showed him the palm size swelling near the sternum he stopped protesting. DCH were great. Shown into the family room which has sofas so no sitting on hard chairs. Considering the day they were having we were seen quickly - in & out in under three hours. X-ray showed no fractures. Doc said soft tissue is being irritated by the bone met & reiterated that he should use as much Oramorph as he needs, that the GP needs to know what level gets the pain manageable. Now he is sleeping having had a much better evening as the pain wasn't as severe. Will talk to the GP in the morning. She is writing to the onco to see if we can bring the date forward. I will also call to talk to his secretary tomorrow.

Chris - thank you, inc for sharing your journey on here. Telling the kids would've been utterly unbearable had they not been so damn grown up about it. DD said (to me, a few days after the news) "But I'm only 17.” I reminded her gently, that a girl in her year lost her father when 15 to a huge motorbike accident. She didn't get to say goodbye, build memories, say all of the things she has since regretted not saying when she had him next to her. We will get those memories. We will have time to say all the things we need him to hear & hopefully, we'll even get to say goodbye. Slightly hypocritical as I often find myself thinking "But I'm only 44.....” This freakin' disease is evil, but time is now so precious x

David - thank you again for your advice & care. Re your pointers: 1) oh, no fear! I will be on the phone & tears are rarely far from me atm. 2) yessiree, done. See above for results & thoughts. 3) that's a relief. 4) did so yesterday. 5) no, no T bloods done at all. So we've no idea. Will ask B to mention it when he calls today. Thank you for being there x

John/Sandra - I talked through the whole hospice/pain meds issue with B on Friday night as his pain was so bad that I realised that now is the time. Thank you for the advice though. I'd rather hear good advice a hundred times than have everyone assume someone has already told me x

Lyn - as above 🙂 We both took notes when we saw the Urologist & he said next lot in 3 months. Will get B to ask GP's advice. Didn't think about how CT supports HT so thanks for the info as well as the support. Yes, it is ardenocarcinoma. I'm guessing that it being the one that is being researched most as the more common?

Huge hugs to you all, Mx

User
Posted 11 Sep 2017 at 18:00

I am not querying how often the onco said he should have the injection - I was suggesting that you make sure the nurse didn't give him a one month dose instead.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 12 Sep 2017 at 01:05

Hi ,


Thinking of you all.


Gordon (Devon)


 

User
Posted 22 Sep 2017 at 00:59

Lyn- yes it was a three month injection given.

Gordon - thank you. It's amazing how just knowing someone is thinking of us in this helps. Certainly don't feel as alone as I did at the start of all this!

User
Posted 22 Sep 2017 at 01:38

Quick update -
Some good news - The BoyChild is now happily ensconced in his flat at Aston University. He's enjoying freshers week & likes his personal tutor & four flat mates.
Results from B's L humerus X-ray are in & they show that the black signal on the bone scan is an old injury. Yippee! Also, his Oncology appointment is now next Thurs, 28th, due to a cancellation. Such a relief. That said, he's now also waiting for an appointment at The Royal Marsden as the GP agreed to refer for second opinion.

Now the crap news - pain in hip & clavicle/shoulder/sternum still around tho they thankfully seem to act like Tag Wrestlers atm, with one area at a time flaring up. New pain in ribs, matching Bone Scan results. Fatigue clinging limpet like regardless of sleep. I begged B to see the doc re his PSA as I know that these signs are not good when in the middle of a HT pause before the next round. Sometimes I hate being right - his PSA has dropped but only from 302 to 269. 33 points down after first set of HT isn't good, I know. Torso CT w/ contrast confirmed all other bone mets & now there are tumours starting in each femur. No danger of MSCC yet. OH's greatest fear is liver mets, so them finding even indeterminate liver lesions was a blow. Multiple enlarged para aortic & pelvic nodes. Size of tumour indents bladder base, which I find worrying. Thankfully there's a 'fat plane between the rectum and the prostate.'

So I swing from fine to utterly frozen in fear of what lies ahead.

Tomorrow I drive our DarlingDaughter to Falmouth to look at Exeter University's Penryn Campus on Sat. B is working so it's a girly weekend away, two nights in Falmouth as it's the only way I can do it with her. A 4hr drive either way isn't something I can do twice in a day, in 24hrs it is very hard, so if anyone knows of a good fish & chip place for Saturday eve we'd appreciate it!

Thanks for being there, even the silent readers, I don't know how I'd do this without you.
Mx

User
Posted 22 Sep 2017 at 17:05
Thinking of you and your family, its hard but trying to keep some normality in your life routine,work etc makes things a little less intense otherwise find yourself constantly thinking about the bloody p/c and feels like its overtaking your life, and its taken over enough already without it invading every waking thought..even just a few hours without it been the topic of conversation in our life is good weve made a deal that we,l only speak about it if its anything of importance regarding diagnosis treatment etc .. found last week had a couple of days off work found myself in tears on a few occasions thinking about how much i just want our life back to pre-diagnosis without all the worry and.
How we,l cope when side effects of treatment kick in..enjoy your time with your daughter try to relax and have some time for you, you need it or you.l burn yourself out..take care hope your o.h mannaging his pain now..jo.
User
Posted 23 Sep 2017 at 00:52
Hi Mel,
Thank you for your comment on my post as you say it is comforting to know that others are out there even though some are just reading although not commenting some just don't know what to say to us . You used to be able to see how many people where reading your posts on the old forum and that's something I think should be bought back .
I suppose I am classed as an old timer on here but trust me I remember those early days as a newbie when the panick and fear was oh so raw just like you are feeling know .
The emotions are running high and it's all a bit crazy in the early days , I would love to tell you that 4 and a half years on I take everything in my stride and cope admirably.
Of course that's not how I Roll , ok so most days now emotions are fairly normal life goes on and we get on with day to day living , then that PCA roller coaster decides to spin you around again , shake you about a bit and flip you right back to those terrifying first few months.

In the early days for me of posting on the forum there was some one called Topgun and he for me was an inspirational person if you get a moment look him up . His very famous strapline was " Life is for Living " and I am so glad that I listened to him because if I hadn't then our last 4 plus years would have been wasted.
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
User
Posted 11 Oct 2017 at 10:26

I’ve started to type an update so many times. Either I have no energy left, things change so I have to start again or like today, my carefully crafted piece I did in Notes gets eaten!

So where are we. Oncology appointment went well. B starts 5 days of targeted radiotherapy tomorrow on his right hip/pelvis where the original pain started & generally he has pain daily. Then 10 sessions of docetaxel from 13 Nov, one every 21 days. Onco thinks he will manage 6, maybe 8 but obviously he wants to manage all 10. Onco not too worried about small PSA drop. Now have his nurse as B's named nurse which is fab as the last one was bloody hopeless. She’s already given more support than we had before which is great as things are not going well.

B has continued to have new hotspots flare up, matching bone mets on the scan & leaving him exhausted & now taking tramadol as often as he can. Sciatica with back pain & left iliac crest being the latest. Onco agreed that having a testosterone level to use as a base for during treatment was a good idea (I kinda demanded that it was done) & I’m glad it was done. Yesterday B got the results - 21.6. Normal. Where they’d expect it to be without HT. I wanted to scream “l ****ing told them the HT wasn’t working!” He starts Zoladex asap but we know that this is not a good sign. I barely slept last night as I was just impotently furious. Poor choice of words maybe as despite his T being normal the ED started within a week of his Prostap injection.

But to end on something more positive! We spent last weekend in Venice 😊😊. A dear friend from B's Uni days came to stay & as it always does, talk turned to holiday plans (usually theirs). I said one thing I want to do is go to Venice with B so we were planning it for in a years time. Asked why so far away I admitted that we can’t afford it before then but it gave us something to aim for. Over breakfast the next day we were handed an envelope that said ‘For Venice. Sooner rather than later.' It contained a cheque for £2000. There were so many tears, both of gratitude & in recognition that sooner might be a good idea. We booked it straight after the Onco appointment as we realised that if we didn’t do it soon it could be 7 months before we can think about travel. The added beauty was that it meant we were there for my birthday on Saturday. We didn’t plan anything, just played it by ear to leave time for B to rest from the met pain & me to rest from my own chronic pain. Didn’t think about how many steps we’d have to climb/descend & how getting about with a crutch (me) would be a challenge! But returning to the hotel wasn’t a hardship as it was just two bridges from San Marcos, stunning views across the basin & our room had the biggest round bed we’d ever seen!! Once we stopped laughing at that we noticed the spa bath which we both made good use of for pain relief. So it couldn’t have gone better, stunning sunshine, great food (even tho B feels sick most of the time) & other friends had the nicest bottle of Italian wine we’ve ever had (we used to be major good red wine fans) & a huge box of chocolates put in our room for my birthday.

B's T results show that our wonderful friend's timing couldn’t have been better. Whatever happens now I’ll always have Venice, precious memories & laughter that will carry us both thru the coming months because we’ve sworn to return, somehow. A mixed post, I know. But thank you for reading, for positive thoughts & light. Mx

User
Posted 11 Oct 2017 at 17:29
Hi I have been following your journey with Pca, I am so sorry that things have moved so fast but delighted that you have had the time in Venice, I go there in 2 weeks as my wife always wanted to go too.
Your journey is so different to mine although the end will be the same so I can't offer you advice other than my current mantra, " dream like you have forever, live like you only have today". Sending you both the best vibes I have.
Kev

Dream like you have forever, live like you only have today Avatar is me racing in the Sahara April 2018

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.
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

A
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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