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User
Posted 01 Aug 2017 at 13:06
Hi Guys

I had my 1st Chemo on Friday, Saturday my taste buds were affected and I also experienced a slight nausea, so all par for the course. My main problem is the bone pain which has been horrendous which starting on Sat night and affected every bone in my body even my teeth, so guys what do I take to control the pain, I have taken paracetamol 500mg every few hours which helps but only slightly, also from your experience how long does this symptom last and is it likely to happen after every cycle.

Thank you

Roy

User
Posted 01 Aug 2017 at 14:11

Can't help much Roy because I got little in the way of bone pain after each infusion. How about calling the chemo nurses in the ward where you had chemo (I'm assuming you have a similar structure at your hospital as I had at the RD&E)? Have you tried 1g of paracetamol (the max dose every 4 hours up to 4g per day)? I find that dose is helping with the shoulder pain I now have.

Edited by member 01 Aug 2017 at 16:20  | Reason: Not specified

User
Posted 01 Aug 2017 at 14:21

Hi Roy when my OH had chemo approx 3/4 days after he would get horrendous pains in thighs and also in old injurys such as ribs ,ankle and even in his ear where years earlier when he'd been welding a piece of moulten metal went in ,he delt with it by taking co-codomel .It would be mainly at night when it was bed time and last approx 2/3 days .this gradually eased after the 3 cycle of chemo .hope this helps
Debby

User
Posted 01 Aug 2017 at 14:45

The best pain relief you can obtain over the counter is co-codamol ( a mixture of paracetamol and codeine ) and Ibuprofen , taken at the same time 4 hourly. It's like 3 painkillers in one hit. But make sure you eat and also be aware you can get constipated. Also , Codeine is addictive apparently so should be used for 3 days only. Never stopped me. Dissolvable tablets in water hit the pain quickly

If life gives you lemons , then make lemonade

User
Posted 02 Aug 2017 at 13:47
Well I have talked to a few people regarding the control of the pain, so it seems it will be initially trial and error with over the counter meds. One thing that came out of the discussion was this was maybe associated with the injection I self administered on sat which was to boost the white blood cells which makes sense.

Thanks

Roy

User
Posted 02 Aug 2017 at 17:20

My husband has had 2 Chemo sessions and also self injecting Filgrastim. He had some bone pain but was told this was due to the injections. The pain responded to pain killers and didn't last long in his case. He was told if it continued or got worse then to phone the hotline no we had been given. If you have been given a contact no it may well be worth asking. My understanding is that Filgrastim is fairly new to be used in this way and they are wanting to monitor any side effects.

User
Posted 02 Aug 2017 at 22:59
Hi hiitsme

It does seem to be related to the injection, I assumed it was a normal part of the treatment and everyone had it, so I will be having a word with my Onco and requesting a pain killer to control the symptom next time if needed, as I don't want that intensity of pain again.

How is your husband responding to the chemo?

Thank you

Roy

User
Posted 02 Aug 2017 at 23:14
Hi Roy ,

I can't comment on the pain level re the chemo but no one should experience pain that is not well controlled so my advice would be contact your GP asap , also your oncology nurse please don't assume it is part and parcel of any treatment . Phone the chemo dept and explain what is happening.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 03 Aug 2017 at 10:30
Hi Julie

The pain level has now reduced fo a manageable level. I found the card they give you to report problems and rang the number and was told I could take over the counter meds that I am not allergic to, but I will be asking for something more powerful next time. If the intensity is relative to its affect on the cancer then it's given it a good kicking.

So pleased to see Trevor is improving, it shows you that we all should question what we are told and not always accept the prognosis, we are all individuals and one size does not fit all,so keep on fighting for your man. Remind him he owes you one.

All the best

Roy

User
Posted 18 Aug 2017 at 10:43
Just viewed my results 3 weeks after my first Chemo, my PSA has gone up from 5.7 to 7, so you can imagine I am gutted, especially as it was going down albeit slowing in its reduction time. I am aware that sometimes PSA can rise initially and then decrease at the start, so if any of you guys out there have experienced this, did you achieve a reduction after further cycles.

I talked to my Onco regarding the pain after the jab to increase my WBC and he said that I won't receive it this time, as my count is well up at 17,000 so that's a plus, my red cell count has gone down slightly but still within normal limits and all other blood seem OK so the green light has been given to proceed with cycle 2 next Tuesday.

All the best

Roy

User
Posted 18 Aug 2017 at 12:09

Can't answer your query Roy but want to wish you well. Hopefully the PSA rise is to be expected at this stage.

Good luck with the next round of chemo

Bri

User
Posted 18 Aug 2017 at 12:54
Hi Roy

The cabazataxel I am on at the moment I had small increases in PSA on both my first and second cycle then a good drop on the third

Hope you get the same results

Si

Don't deny the diagnosis; try to defy the verdict
User
Posted 18 Aug 2017 at 17:21
Hi Si

I am Docetaxel at the moment but will ask if I would be better off with cabazataxel if my PSA continues to increase. It's good to see you are getting a good response and long may it continue

Thanks

Roy

Edited by member 18 Aug 2017 at 21:15  | Reason: Not specified

User
Posted 18 Aug 2017 at 18:58

Good luck Roy
always watching and wishing you well
Barry

User
Posted 18 Aug 2017 at 19:12

Wishing you the best Roy as ever. Hope things come good for you

If life gives you lemons , then make lemonade

User
Posted 18 Aug 2017 at 21:46
Hi Roy,

Can't comment re the PSA and chemo but just wanted you to know that I am thinking of you .

X

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 19 Aug 2017 at 01:08
Hi Roy,

I just wanted to wish you Good Luck and hope everything goes well with the chemo. Try not to worry, I know it's hard not to but hopefully the PSA will start to fall.

Steve

User
Posted 19 Aug 2017 at 08:21

Take heart Roy, I don't think medics expect a drop after only one session!

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

User
Posted 29 Sep 2017 at 10:26
Hi

Just an update. After my second Chemo and prior to my third my PSA rose again from 7 to 7.4 which showed an increase in doubling time, so to me something positive was happening. Well I have just seen my PSA results from yesterday and finally it's down to 4.5 so it's now going the right way let's hope it continues. I will me having my 4th Chemo on the 3rd of Oct so I will be two third through a period which I have found tough, but as they say "no pain no gain" so I am feeling a bit more positive than I was a few weeks ago.

All the best

Roy

User
Posted 30 Sep 2017 at 10:13

Roy

Keep the fighting going. Hope the pain goes down and the gain goes up.

Ray

User
Posted 30 Sep 2017 at 19:12
Lovely news Roy ,

The chemo can't be easy but you are doing it , you are doing IT.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 30 Sep 2017 at 20:16

Best wishes ,keep going ,
Debby

User
Posted 30 Sep 2017 at 20:25
Ah Roy

So many think chemo is easy, but I don’t see it. We are all different I know, but I’m sorry you are finding it tough. Big cyber hugs (gently given).

I hope things continue to improve for you.

Devonmaid

User
Posted 21 Oct 2017 at 10:25
Hi

Thought I would post an update in my Chemo journey. I am due to have my 5th session on Tuesday and at the moment my PSA stands at 3.5 so down for the second time albeit slowly. I must admit still finding it a struggle but hanging in there.to all you Chemo guys how do the stats look compared to your experience, even though we are all different I would appreciate your input, I am also on Casodex 150mg.

26/07/2017 PSA 5.7

28/07/2017 Chemo#1 started as it is the only treatment being offered to me now. Docetaxel every 3 weeks for 6 sessions.

17/08/2017 PSA 7

22/08/2017 Chemo#2

07/09/2017 PSA 7.4

12/09/2017 Chemo#3

28//09/2017 PSA 4.5

03/10/2017 Chemo#4

19/10/2017 PSA 3.5

24/10/2017 Chemo#5

All the best

Roy

Edited by member 21 Oct 2017 at 10:28  | Reason: Not specified

User
Posted 21 Oct 2017 at 11:50

Hang in there Roy.
All the best

If life gives you lemons , then make lemonade

User
Posted 21 Oct 2017 at 15:25

So far so good, Roy. Hope the PSA keeps going down. It may still drop after your sixth session, of course. If you reach a plateau, I guess they'll try steroid treatment as has happened in my case. Hang in there and hope for no side effects on fifth and sixth cycles.

Good Luck

AC

User
Posted 21 Oct 2017 at 17:41

Hi Roy,
I always follow your postings and I must say you have worked very hard to tame this beast,
I hope that there is some follow up treatment plan after chemo for you,

I am now on early Chemo for recurrent Pca, six sessions which should improve OS by on Average lets say a year
HT should work better for longer [fingers crossed]
I also suffer bone pain but I have now had second session and it was not as bad this time as the first time
I self inject starting on day four after chemo for five days
I was doing it wrong for the first few days not fully completing the injection so that could have been the cause of the bone pain,
also suffer from extreme tiredness in the first week ,sore mouth and lack of taste , sleep problems as well

Good luck Roy I know it is not easy

Barry

User
Posted 21 Oct 2017 at 19:10

Still dropping Roy...stay strong mate

Bri

User
Posted 27 Oct 2017 at 18:55
User
Posted 15 Dec 2017 at 12:40
Hi Guys

I thought I would give an end of the year update as I have now finished my 6 cycles of Chemo and having a break until next year to let the side effects improve. The trend is still downwards so a positive note to end the year on.

26/07/2017 PSA 5.7

28/07/2017 Chemo#1

17/08/2017 PSA 7

22/08/2017 Chemo#2

07/09/2017 PSA 7.4

12/09/2017 Chemo#3

28//09/2017 PSA 4.5

03/10/2017 Chemo#4

19/10/2017 PSA 3.5

24/10/2017 Chemo#5

09/11/2017 PSA 2.5

14/11/2017 Chemo#6

14/12/2017 PSA 1.3

Wishing you all a very Merry Christmas and a Curative New Year

Roy

User
Posted 15 Dec 2017 at 13:49
Great to see your PSA reduce Roy and finish the year on a positive. Wishing you and all on the forum all the best, Ian.
User
Posted 15 Dec 2017 at 19:38
That’s really great to see those results Roy.

Have a fab XMas

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 15 Dec 2017 at 22:35

Very encouraging Roy. Your seasonal good wishes and hopes for the New Year warmly reciprocated.

Barry
User
Posted 22 Mar 2018 at 18:39
Hi

Well my results are in and since my last chemo in November my PSA stands at 0.49, which is not as low as I was hoping but still on a downward trend. I met with my Onco today and it was decided to come off the Bicalutamide and tamoxifen and be hormone free for 3 months then rescan and formulate the way forward, which may include Enzo, Abbi tabs, Radium 223.

I have discussed the possibility of being tested for the Brca gene mutation which is now more available, but would be self funding, it may open up new treatments for me but the implications for my family of me being positive needs to be thought through before I make my decision.

All the best

Roy

User
Posted 26 Jun 2018 at 13:32

hi Guys

As some of you may be aware, I underwent Chemo against my better judgement, but relented as it was the only game in town, which turned out to be an experience I found testing to say the least, leaving me with peripheral neuropathy in my hands and feet, basically leaving me housebound, unable to walk due to the pain, so going from being able to walk the dog miles beforehand it has left me in constant pain, although the pain is slowly diminishing it is still restricting.

Anyway just had my results from my blood test yesterday my PSA has skyrocketed from 0.49 three months ago to 5.20 now, so to say am gutted is an understatement , the doubling time is now less than a month, so where do I go from here, do I just go back on hormones and accept the side effects, pay for genetic testing, look for a trial or something else?. this must be the first time I don't have a backup plan so any comments would be welcome.

 

thanks

 

Roy

Edited by member 26 Jun 2018 at 13:35  | Reason: Not specified

User
Posted 26 Jun 2018 at 15:41
I’m not clever enough to offer advice but just wanted to say how gutted I am for you and offer support. Sending strength.

If life gives you lemons , then make lemonade

User
Posted 26 Jun 2018 at 17:48
Roy, having read your biog, I'm puzzled that you ever stopped the hormone treatment. Through all my various treatments over nearly eleven years, I've always been on Zoladex. Your PCa looks to have been pretty aggressive. Was there never a biopsy? There are treatment options available to you, I'd have thought, as there have been to me. If yours is a highly differentiated cancer, the latest, yet to be cleared by NICE, Keytruda, might be of interest, too. Your oncologist is best placed to advise, of course, but your PSA number is still low and you should certainly not despair.

Good luck

AC

User
Posted 26 Jun 2018 at 22:07
My husband finished Chemo last October PSA 1.1 (down from over a thousand at diagnosis March 2017). Since October every PSA has risen (doubling in 5 weeks) and he was offered Abiraterone, Enzalutmide or clinical trials. We went to the Marsden to talk about clinical trials and is now on a trial for Ipatasertib / or placebo with Abiraterone. PSA coming down and only 6 weeks into this. Minimal side effects if any. A few odd aches occasionally but no pain killers needed, We know he is on Abiraterone and there is a 50% chance he is on trial drug but it is double blind. Lots of monitoring and will be scanned again next week.

I hope you find a treatment that works for you.

User
Posted 26 Jun 2018 at 22:35
Can’t advise Roy but just want to wish you well and sorry to hear the PSA has risen. I’m sure others will offer sound advise as pretty sure there are still plenty of tools in the box

Take care

Bri

User
Posted 26 Jun 2018 at 23:17
Roy,

Sorry that you have suffered severe side effects of Chemo without the hoped for improvement. I would agree with AC this needs to be discussed with your oncologist. You could also seek a further opinion from the Marsden who perhaps have a wider experience through running many trials.

Barry
User
Posted 28 Jun 2018 at 17:38

Hi All

thanks for the input and best wishes. I saw the Onco today it seems that all he is offering is a CT scan and requesting my GP to administer Degarelix, which he says they may not due to the cost. No Abbi, Enzo or Radium unless my testosterone is lowered. I enquired as to genetic testing which was talked about at the previous appointment but he said if they found a defect in the genes tested it wouldn't be possible to treat, but the Brca test may be useful if I personally can put up a good case with the Women's Hospital for them to allow it, feel like I am being fobbed off, so I might go for the CT scan and if this is all there is on offer, I may contact the Marsden to see what trials I may be eligible for.

one other thing is that when looking on the NICE website it states that Degarelix is only sanctioned for men with spinal mets so even if my GP agreed it may not be allowed unless the scan shows its now gone to the spine.

 

all the best

 

Roy

Edited by member 28 Jun 2018 at 19:13  | Reason: Not specified

User
Posted 22 Aug 2018 at 13:33

Hi

just viewed my PSA online and it doesn't look good, as it has risen from 5.2 to 23.2 showing a doubling time of 26 days, so. It looks like the Chemo was a waste of time and possibly worsened my doubling time, so with hindsight I should have possibly followed my gut instinct and kept well away as the only thing it has given me is Peripheral Neuropathy making it difficult to walk. I also had a PET/Ct scan but will no know the results for a month as my Onco is away on holiday, so what do I do, do I have the only treatment on offer Degralix or start taking the remaining Bicalutamide I have left until my Onco returns.

Roy

User
Posted 22 Aug 2018 at 14:13

I’m so sorry to read this Roy. The waiting game until you see oncologist again is very difficult.

Are you expecting to be offered Abiraterone or Enzalutamide?

 

User
Posted 22 Aug 2018 at 14:31

Hi Ido4

Thanks for the reply. I have been told that Abbi or Enzo can only be offered if I am able to lower my testosterone to Castrate level, I don't know if others have been told this or it can be used as mono therapy.

 

thanks

 

Roy

User
Posted 22 Aug 2018 at 16:47
Roy, I understand that abiraterone is given to men already on HT. I assume it is the same for enzalutamide. Certainly in my case, abi was a supplement to zoladex. It worked for nearly three years. I suspect in your case, however much you may dislike the inevitable side effects, you are going to need to get the testosterone out of your system if it is feeding the PCa. A month of HT will probably get you to a point where abi becomes an option, but thereafter I suspect you will stay on HT. Checking out with your oncologist.

AC

User
Posted 22 Aug 2018 at 17:51
Sorry to read this Roy. As with everything PCa treatment seems to differ wherever you are. I’m not being checked again till January next year and my psa is expected to be 100+ with zero signs of spread. Because I’ve rejected scatter-gun RT four times now , HT hasn’t even been offered. All NICE protocol. They hardly going to offer hugely expensive drugs when no distant mets seen. However they will offer them if you have SRT and then still rising psa. But my Onco whispered in my ear I’d be a candidate for Abi and early Chemo , which even bypasses normal HT. Not even sure I’m interested in anything tbh having read many stories.

Hoping that you get the best treatment and I guess as ever you have to makes waves to be seen sometimes. All the best

If life gives you lemons , then make lemonade

User
Posted 22 Aug 2018 at 20:30
Abi and enzo work best on castrate resistant PCa - yours isn't castrate resistant yet so you would be taking a drug that isn't designed for the stage you are at. I think that unless you can get on a trial, you have to opt for the degarelix and see what happens - once that fails, abi or enzo come into play.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 22 Aug 2018 at 20:51

Hi guys

thanks for the support. 

AC yes you are right I need to tackle the testosterone and Degralex should get me to castrate in less than 3 days which after past experience is not appealing with the side effects and the possible mutation of the PCA, whereas Bicalutamide has caused me little problems apart from the obligratory man boobs. The Onco took me of Bicalutamide saying it was no longer effective which I don't understand as my PSA was still on the decline although declining at a slower rate.

 

Hi Chris

its difficult to know what path to take knowing that every intervention seems to cause the cells to mutate to find a way to survive. I have always questioned the way NICE lay out the steps we are to take based on cost effectiveness, leaving other counties to innovate and shoulder the costs.

one thing I don't understand is if Chemo is designed to kill fast replicating cells, why do we continue with hormones suppressing this process,as i believe with other cancers they stop hormones whilst undergoing Chemo.

 

thanks Lyn for the reality check I was not told that Abi or Enzo work better on CRPCA as my Onco has always said it was an option after chemo. Do you know if it can be used as mono therapy.

 

thank you all

 

Roy

 

User
Posted 22 Aug 2018 at 21:09
Thinking of you Roy and hoping the scan results are ok. It’s a sod that you have to wait a month though

Bri

User
Posted 22 Aug 2018 at 22:50
No, it is always given with HT I think. The point is that degarelix etc stops production of testosterone; when you become castrate resistant what they mean is that your cancer has learned to create pseudo testosterone so that it can feed. Abi & enzo stop that bit from happening - it wouldn't treat your cancer if you have testosterone in your body.

Bicalutimide does not result in castration so will not solve your problem.

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

 
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