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chemo or not

User
Posted 17 Jun 2017 at 16:51

Good afternoon all


I've just joined the forum and this is my first post.


I am 68 years old and was diagnosed with PC in 2008 and was successfully treated with hormones and radiotherapy.


About 18 months ago my PSA started to creep up and after 2 bone scans, an MRI scan, a CT scan and a PET scan, I've now been told that cancer has been found in the lymph nodes of my pelvis and abdomen.


I've been offered more hormone treatment and have the choice of either having chemo alongside the hormone treatment or to just have the hormone treatment on its own. I've been offered 6 sessions of Docetaxel with each session separated by 3 weeks. The consultant tells me that the chemo will make the hormone treatment more effective. Apparently, If I delay having the chemo until further down the line, I've been told that I would have to have 10 sessions rather than 6.


I'm in a bit of a dilemma. Do I have the chemo now or wait? The coward in me wants to wait as I have read through the list of possible side effects and whilst I realise that I may not experience all of these, I don't find it very reassuring. The consultant is recommending that I have chemo now. Help!


Brian

User
Posted 30 Aug 2017 at 20:57

Just been told by the hospital that my first session of chemo will be next Thursday, 7th September. If I manage to stick it out, my 6 sessions could be over by Christmas, but I think they also said that about World War 1! Wish me luck.

User
Posted 19 Sep 2017 at 17:26

Skellyboy, you have had rotten luck. Most men find chemo a breeze. The key with neutropenic sepsis is early treatment with anti-noise, which you have had. Lucky you were in hospital at the time! I would suggest a different approach to the laxatives. You may find it helpful whilst on chemo to take a sachet of Movicol or your local equivalent a day just to keep your stools soft, rather than waiting until you have problem. It worked for me!

AC

User
Posted 17 Jun 2017 at 19:33

Some of the members on here who opted for early chemo have had amazing results. Some have continued working throughout and not many have had horrendous side effects. Presumably if you started chemo and found it too tough you could call a halt. Perhaps worth checking with the specialist?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
Posted 17 Jun 2017 at 19:33

Some of the members on here who opted for early chemo have had amazing results. Some have continued working throughout and not many have had horrendous side effects. Presumably if you started chemo and found it too tough you could call a halt. Perhaps worth checking with the specialist?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 18 Jun 2017 at 09:21

Hi brian ,my OH had early chemo finishing just over a year ago after being diagnosed in Dec 15 .when it was first offered it was a shock mainly as it hit home that it was not curable . Gary had 6 sessions in all and was one of the fortunate ones as had very few side effects and continued to work in a manual job all the way through ,yes it was at a slower pace due to fatigue but getting up every morning gave him a purpose .also only lost hair on body with head hair just thinning slightly .
I would recommend early chemo mainly because you are still relatively fit in the earlier stages and could tolerate any side effects better then when maybe other treatments start to fail .
Only you can make this decision but I hope this will give an insight of how it could be .
Garys stats were PSA 23
Gleason4/5
With para aorta nodes involved .
His PSA came down to 0.01 after about 3/4 sessions and has stayed there for over a year ,He is currantly on stampede trial arm j
Best wishes
Debby

User
Posted 18 Jun 2017 at 09:45

Your choice needs to be based on the expected outcomes for YOU, provided by your doctors; to that extent, it's a tough decision for you alone.


On the more general question of 'chemo now' or 'chemo later', may I commend the Rabbit Theory:


Just for a moment, think of your PCa as a family of rabbits playing in a field.


You can poison them, but for various reasons, you can only use a certain amount of poison each week.


Lay the poison now, and there's a chance you'll kill them all within a few weeks; at worst, you'll reduce them to a very small group.


Postpone the poison, what happens? You lay the poison, it kills some rabbits, but by now there are hundreds of them. you'll be laying poison for months before you get them all ... and, in fact, you may never manage it - there's so many that they're breeding faster than you can kill them.


And, yes, they will be developing an immunity, given time.


Whether you have chemo is up to you: but if you decide to have chemo, the best option is to start last week.


 


Good Luck!

.
-- Andrew --
"I intend to live forever, or die trying" - Groucho Marx
User
Posted 24 Jun 2017 at 22:23

Thanks for the advice.


Since posting, I've made the decision to have the chemo now rather than wait. It seems to make sense in the long run.


I began taking the hormone pills 3 days ago and will have my first Prostap jab in 11 days time.


Will try and make regular postings as to my progress, once I hear back from the hospital.


Cheers


Brian

User
Posted 24 Jun 2017 at 23:40

All the best
Debby

Edited by member 24 Jun 2017 at 23:41  | Reason: Not specified

User
Posted 27 Jun 2017 at 22:21

Just following on from my previous post, I've told the hospital that I want to have the chemo now rather than wait. I was wondering what the next step is. I had a blood test when I was last at the hospital (just over a week ago), so they have my latest PSA reading. Presumably they will work out a treatment schedule for me. How does it work and how long does it all take? 

User
Posted 28 Jun 2017 at 16:04

Just got an appointment to have a bone density scan tomorrow afternoon, a last minute cancellation.


Watch this space!

User
Posted 28 Jun 2017 at 16:14

Skellyboy, you will have a briefing session with an oncology nurse who will give you some steroids (dexamethasone) to take on the day before and day of your first scheduled infusion. The nurse will probably book the first three sessions. When you go in for your infusion, you will be seated comfortably in an armchair and a cannula attached to the back of whichever hand has the straighter veins. First of all you have a five minute saline flush then some anti-nausea drug goes in with more saline fluid, then about an hour's worth of docetaxel, followed by another flush. Then you go home, perfectly able to walk normally and drive. You'll have some anti-nausea pills to take for a couple of days after the infusion and some others to use if those aren't enough. Also, you'll be taking 10 mg of prednisolone (another steroid) daily until you finish the six cycles. You will have a blood test a couple of days before your next infusion and see your oncologist or a nurse to check on how it has gone. If all is well and it usually is, the cycle repeats every three weeks.

You'll be given a leaflet telling you about the treatment and possible side effects. Most men find these a nuisance, some find them a bit unpleasant but rarely are they disabling.

I hope all goes well for you.

AC

User
Posted 03 Jul 2017 at 21:32

Thanks for the information - most useful.


It's always nice to know what to expect. 


Brian

User
Posted 30 Aug 2017 at 20:57

Just been told by the hospital that my first session of chemo will be next Thursday, 7th September. If I manage to stick it out, my 6 sessions could be over by Christmas, but I think they also said that about World War 1! Wish me luck.

User
Posted 30 Aug 2017 at 21:01

Best of luck
Debby

User
Posted 30 Aug 2017 at 22:31

My husband has had his 4th session today and so far not too bad. A few bad days but that was mostly from other treatments at the same time. Hopefully all will go well for you.

User
Posted 31 Aug 2017 at 08:14

Good Luck, hope it goes easy!

.
-- Andrew --
"I intend to live forever, or die trying" - Groucho Marx
User
Posted 06 Sep 2017 at 19:11

Good luck,


Will be watching how you get on


Barry

User
Posted 15 Sep 2017 at 17:28

Just a line ,


Hope all is well with you 


Barry

User
Posted 18 Sep 2017 at 20:20

Now is a good time to update you on my first cycle of chemo which began on 7th September.


I felt good over the first few days, apart from a rather suppressed appetite but I noticed that over the weekend, I had only had one very small bowel movement. I didn't think much at the time but come Monday morning (day 4) I had the worst constipation that I've every experienced. I rang the hospital, who referred me to my GP. As I was also unable to pass urine, the GP was concerned enough to call the hospital, who advised me to come straight away. I was admitted to the Ambulatory Care ward that evening and was initially treated for bladder retention. However, by the middle to the week, my blood count had fallen like a stone and I was immediately put on a saline drip and IV antibiotics. I was then moved to the cancer ward, where they monitored my condition until yesterday afternoon, by which time my blood count had recovered enough for me to be sent home. The discharge letter to my GP said that I had been treated for neutropenic sepsis. As I only had constipation when I was first admitted to hospital, I can only assume that this infection had been picked up in the hospital between the time of admission and when I was moved to the cancer ward (a worrying thought considering the apparently serious nature of this condition).


I am now trying to get my strength back now I am home and assume that this will happen gradually as my blood count continues to rise. I have a good supply of laxatives, which I will take as soon as I go a day without a bowel movement. 


This chemo is certainly a shock to the system.


 


 


 

User
Posted 19 Sep 2017 at 17:26

Skellyboy, you have had rotten luck. Most men find chemo a breeze. The key with neutropenic sepsis is early treatment with anti-noise, which you have had. Lucky you were in hospital at the time! I would suggest a different approach to the laxatives. You may find it helpful whilst on chemo to take a sachet of Movicol or your local equivalent a day just to keep your stools soft, rather than waiting until you have problem. It worked for me!

AC

User
Posted 19 Sep 2017 at 18:00

Thank you for the update,


I will take on board all advice given to you


 


Barry

User
Posted 20 Sep 2017 at 17:51

I'm sorry my spellchecker made antibiotics into anti-noise (!!!) and I failed to spot it when posting.
AC

User
Posted 21 Sep 2017 at 11:49

We could all do with a little anti-noise from time to time !!


I'm all stocked up with laxatives in time for the next cycle. If I get struck down with constipation again, I'm ready.

User
Posted 01 Oct 2017 at 16:44

Chemo update


Had my second cycle of chemo on Friday. It went very well and I'm feeling good. I've been taking Movocal to ease the constipation and it looks like it's doing the trick. The steroids are making me feel quite energetic and I have a good appetite, although some foods are tasting a bit weird. For instance, I like a nice strong cup of "builder's" tea but as I've got a sweet taste in my mouth and don't take sugar in my tea, it's rather spoiling the flavour. But hey, that's a small price to pay. I also find it hard to concentrate on doing one thing and seem to get easily distracted; the steroids again, I guess. 


To avoid my white blood cell count from crashing again, I have been given a 7 day course of G-CSF injections which I can do at home. I freaked out when the nurse told me that I had to self-inject, as I'm not a big fan of needles (who is?) but it's a piece of cake and quite painless. The consultant said he prefers to give me the injections than reducing the dosage of Docetaxel.


So now I'm trying my hardest to stay away from infections and continue the way I'm going. It's like being in quarantine! 


I'll post another update in a while.


 

User
Posted 01 Oct 2017 at 16:57
All the best.
User
Posted 01 Oct 2017 at 18:10
Hi skellyboy (auto spell checker changes your name into something quite funny) , just wanted to share my experience of the injections you have. I had the same, first one no problem, second one ok but about 12 hours later I started to get a pain in my spine. This got worse and worse and it turned into what I can only imagine is like having contractions (apologies to any ladies who think I am wrong), I ended up with shooting pain in my spine every 20 seconds, I was gripping the chair so tight when they came eventually I was in complete agony. My temperature then exceeded 100 which meant a&e and the iv you described from your first cycle. I had no infection as it turned out just a severe reaction to the injections that sent my temperature through the roof.
I am sure you will be fine but I did not associate the pain with the injections until I saw my onco who said it is a side effect for some. It was over 2 years ago but I still remember the trip to the hospital where I could not get pain free at all. Needless to say I then had no more injections and reduced chemo the next time.
The reduced chemo worried me however it did the job and my tumour in my chest lymph shrunk from 3.5cm to 0.5cm ( normal size) the reduction in chemo was minimal.
Still here now, still running ultramarathons so believe you will get through it all and do what you used to on the other side if not whilst you are still on chemo.
Take care

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

User
Posted 01 Oct 2017 at 20:35

Hello Skellyboy,


Sounds like you and I are going down exactly the same road at the same time and I have shared a number of your problems, ending up in hospital after first Chemo due to temp, constipation like nothing I have ever known. Like you my second session was easier and my third is due on 9th October. I too am having the GCSF injections although mine are being done by a rather lovely district nurse, (perhaps they don't trust me with needles!!).


I will be interested to follow your progress and compare notes.


Hope things carry on in a positive way for you.


Ian

Edited by member 02 Oct 2017 at 21:17  | Reason: Not specified

User
Posted 22 Oct 2017 at 16:04

chemo update


Had my third cycle of chemo on Friday. It's going well although the salty taste in my mouth is worse than it was before. I've been drinking lots of fluids to keep the constipation at bay as that was what landed me in hospital after cycle 1. I'm continuing with the 7 day course of injections after the chemo, to keep my white blood cell count up as this clearly helped me last time. I know that the consultant doesn't want to lower the dosage of Docetaxel unless he has to. 


We have two grandchildren aged 4 and 2 who we haven't seen in ages but this morning we had a web chat with them, which was great. Only it lasted an hour and a half and absolutely wore me out! The kids get so excited that our son has his work cut out to keep them under control.


So it's onwards and upwards. Three down and three to go.


All the best to those of you on the journey.


Brian

User
Posted 22 Oct 2017 at 19:29

Hi Brian,
Thanks for posting,
Looks like you are getting through it, well done

I also am having early chemo plus Prostap for Recurrent Prostate Cancer, [DX Feb 2011]
I have had two Chemo so far and it puts me into urine retention for about a week during which I use a catheter,
I only do five injections starting on day four after chemo,

Barry

User
Posted 02 Nov 2017 at 11:30

Another stay in hospital


In the early hours of Tuesday morning I woke up shivering all over and couldn't get back to sleep. Because I was shaking so much and felt unbelievably weak, my wife rang the hospital. Meanwhile, my temperature was yo-yoing about. After a couple of conversations with the hospital, I was told to head straight to A&E. To their credit, they processed me through their system really quickly. I had blood tests, chest x-ray, ecg, urine sample, which all came back negative.


Only last Friday did I complete my 7 days of G-CSF injections following my last chemo, so my white cell count was artificially high, making diagnosis tricky. They kept me in overnight for observation and as I had no more shakes and my bloods came back normal, I was allowed home yesterday afternoon.


The diagnosis was given as "pyrexia (fever) with no obvious cause". I've got 7 days of oral antibiotics to take, although there doesn't seem to be any obvious infection. I've been told that it may just have been a delayed reaction to the chemo, even though I'm now 3 cycles into my treatment.


I felt absolutely fine during the days leading up to this incident. Which proves that every day is different and potentially challenging.


Brian

User
Posted 03 Nov 2017 at 08:18

Morning Brian,
Glad to see that you are all ok now and out of hospital, good to see how quick they reacted to your problems
Has your PSA now dropped ?.
I had my third Chemo yesterday Psa has dropped from a high of 4.6 to a low of 0.06 ,they also took a Psa test yesterday
I will find out what that reads in a couple of weeks.

Good luck with your next session

Barry

User
Posted 03 Nov 2017 at 15:53

Hi Brian,
One thing I forgot to mention ,
I also take 10mg CETIRZINE antihistimine for three days starting the day before chemo and for two days after chemo
I take then in the evening


Barry

Edited by member 03 Nov 2017 at 15:54  | Reason: Not specified

User
Posted 07 Nov 2017 at 17:21

Hi Barry


My last PSA reading was 0.9, down from 33 when my treatment started. However, I may get a more up to date reading when I go for my 4th cycle of chemo on Friday.


Funny you should mention Cetirazine. I'm a hay fever sufferer and I've been taking Cetirazine all year round for some years. Not sure if it helps the hay fever much but at least I feel as if I'm being proactive.


I'm trying to stay out of hospital as much as possible, as it must be a hotbed for bugs and viruses, especially at this time of year. On Sunday I've got to try and enjoy my birthday and joy of joys, Christmas Day is just 3 days after my last cycle of chemo! Bad luck or what?


Hope all is well with you


Brian

User
Posted 07 Nov 2017 at 18:49

Brian,

Sorry to hitch a ride on your Chemo thread.

I am on my 2nd session of Chemo. I had 8 Cycles earlier this year which reduced my bone mets by 90% and my lung mets by 70%. I then had a 5 month Chemo holiday which was great, but unfortunately the blighters took advantage and returned, hence my return to the Chemo bus. I have just had my 3rd Chemo cycle of this session today (Chemo cycle No 11 in total) and my PSA is back down again to a much more manageable 2.4.

I am fortunate that I have very few side effects with the Chemo and I continue to work part time to keep my brain active although i tend to take the purder week of 7 TO 10 days post Chemo off as this is the most likely infection risk days according to my Oncologist.

My profile gives a better breakdown of my progress. I took the flue jab this year and I am also being encouraged to take the pneumonia jab also this year.

All the best Brian and I will follow your progress with interest and hopefully you can stay clear of those hospital visits as you go forward

Regards

Dave

Edited by member 08 Nov 2017 at 06:03  | Reason: Not specified

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"
User
Posted 18 Nov 2017 at 17:04

treatment update


Had my 4th cycle of chemo last Friday (10th November) but I still can't seem to keep away from the hospital. 


This time I seem to have been hit by extreme physical and mental fatigue. I was coping ok until last Wednesday when I was doing stuff in the garden. I was not out there long but when I came in, I just sat on the sofa staring into space. My wife took my temperature and told me it was slightly raised but when she saw me behaving like a zombie and not responding to her questions, she called the hospital. By this time I had 'come round' but after answering all their questions, they asked me to come to the cancer suite for an assessment. Long story short, all my obbs were fine but after taking bloods, they told me that one of the 'markers' may indicate infection, so once again I was given a short course of oral antibiotics to take home with me, just as a precaution.


Despite injecting myself for 7 days after each cycle and keeping away from public places, this is becoming very taxing. As well as having to cope with the fatigue, I've also had no appetite and an insipid aftertaste with all the food I try to eat. Oh, and added to this there's the indigestion and trapped wind. I knew that this journey wasn't going to be a walk in the park but sometimes one feels totally isolated from the real world. The only time that I feel any camaraderie with my fellow patients is when I have my treatment. It's so unfair on my wife who is trying to cope as best she can, when I never know what I'm going to be able to eat from one day to the next.


I'm pleased to report that today has actually shown an improvement, but I'm still only 9 days in and I've still got 2 cycles to go before I am finished. 


I'm afraid that this isn't a very positive report but maybe one or two of you can empathise.


Brian

User
Posted 19 Nov 2017 at 11:25

Hi Brian,


Thank you for update,


I feel for you as I also get some of your symptom , this is not a walk in the park , my forth one is this Thursday, I am there all day and to be honest I enjoy the whole day out.


 


Barry 


 


 


 


 

User
Posted 06 Dec 2017 at 10:53

treatment update


Just to let you know that I had my last dose of chemo last Friday. I was meant to have 6 cycles but after a meeting with my consultant, he told me that it was not necessary for me to have the final cycle, as it wouldn't make much difference one way or the other. My chemo has only ever been complimentary to my hormone treatment. My final cycle would have been 3 days before Christmas, so at least I can now look forward to the festive season. I shall see the consultant on 20th December, when I should have an update on my PSA and what will happen going forward.


My side effects have followed a similar pattern this week. Felt fine over the weekend but now have no energy, no appetite, a bit of constipation and feeling 'stuffed'. Of course, I'm still injecting myself until Friday and my dietitian has put me on a course of high protein drinks, of which I'm already feeling the benefit. I think that putting on weight is helping me through this cycle, as I feel a lot stronger than I did before.


It's a great feeling to know that I'm having no more chemo and that every day that passes is a day nearer to me feeling 'normal' again.


I'll try and post another message once I've seen the consultant.


Brian


 


 

User
Posted 07 Dec 2017 at 12:41

Thanks for the interesting updates and responses. Some advice for me to consider when starting chemo in January. Time now for both of us to enjoy the festive season.

Michael

User
Posted 07 Dec 2017 at 19:32

Hi Brian
Thank you for the update,
I am getting number five next week but I will ask for number six as the trial results in America show best results with six cycles
of chemo

Barry

 
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