I am a reluctant newby here

User

Posted 22 Jan 2015 at 06:26

Kev
your WBC count is very low indeed at 1.4 a condition called Neutropenia .. very common in high dose chemotherapy I hope your doctor also told you that it is very important that you follow the chemo advice and do not eat fruit that does not have to be peeled, brie and other soft cheese that is made from unpasteurised milk etc etc. during spells of neutropenia you become very prone to infection. The drug you are being given belongs to a group of human growth factors their job is to stimulate bone marrow to produce more white cells for some people this can produce really bad pain usually in the back, hips and long bones of the arms and legs. It can be counter treated with specific pain medication. The slightly better news is that the growth factor is a natural substance and as soon as treatment stops the side effects should go.
It may just be your very fit body reacting strongly to the alien chemo, from the sound of it your Onco has gone for the highest dose and after the first 2 or 3 sessions all of these things may ease off. He may decide to reduce the docetaxel dose a little bit. Is your Oncologist aware that you are still running? you may need to curb back a little until things settle down.
The main thing here is you should not have to suffer, there is pain relief medication that can help.
When you started chemo you should have been given a special booklet with all the numbers to contact in the event of problems. If they do not ring you go to the chemotherapy suite or ward and someone will have to talk to you then!
I will be thinking of you today and wishing you speedy relief.
xx
Mandy Mo

User

Posted 22 Jan 2015 at 07:42

Kev I've taken a look at the info on the Macmillan site and it sounds like the pain is likely to be a side effect of the Zarzio. Makes sense really if the pain started following your first couple of injections. I've tried to put link below

http://m.macmillan.org.uk/article/name/cancerinformation-cancertreatment-treatmenttypes-supportivetherapies-haematopoieticgrowthfactors

bri

Edited by member 22 Jan 2015 at 07:46 | Reason: Not specified

User

Posted 22 Jan 2015 at 17:37

How's it going Kev?

Better I hope.

Steve

User

Posted 23 Jan 2015 at 14:44

Sorry for the delay in response, following my last post I ended up at A&E, so much pain I could only just walk, my temperature was 38.1. They gave me morphine and about 2 hours later the pain went, I had two types of intravenous antibiotic and a chest X-ray , my blood abc had increased to 2.1 so they sent me home at 5-00 am with co- Codamel. , went to bed till 12-00 then had call from Marsden who were concerned about another blood count and that A&E had not given me further antibiotics. Asked me to come in and then admitted me overnight for 4 more shots of antibiotics and lots of regular blood tests. My consultant agrees that I probably had a bad reaction to the jabs as I have had no pain relief apart from the morphine and have had no pain since my evening in A&E. So I am fine I think, they only panicked because my temp spiked for about an hour and I am convinced that was because I had a hot water bottle strapped to my back and was in so much pain I was white knuckle gripping furniture. Just been told I can go home so that is good news!!!

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User

Posted 23 Jan 2015 at 14:45

Sorry for the delay in response, following my last post I ended up at A&E, so much pain I could only just walk, my temperature was 38.1. They gave me morphine and about 2 hours later the pain went, I had two types of intravenous antibiotic and a chest X-ray , my blood wbc had increased to 2.1 so they sent me home at 5-00 am with co- Codamel. , went to bed till 12-00 then had call from Marsden who were concerned about another blood count and that A&E had not given me further antibiotics. Asked me to come in and then admitted me overnight for 4 more shots of antibiotics and lots of regular blood tests. My consultant agrees that I probably had a bad reaction to the jabs as I have had no pain relief apart from the morphine and have had no pain since my evening in A&E. So I am fine I think, they only panicked because my temp spiked for about an hour and I am convinced that was because I had a hot water bottle strapped to my back and was in so much pain I was white knuckle gripping furniture. Just been told I can go home so that is good news!!!

Edited by member 23 Jan 2015 at 14:46 | Reason: Not specified

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User

Posted 23 Jan 2015 at 15:01

Kev,

Been worried about you, hoping they were sorting you out. Hope you're feeling a bit better now.

I thought they would admit you as you seemed to be in so much pain. It's a bit scary when you just wonder when it is going to stop but at least, when you're in hospital you're in the best place to get sorted.

I hope after the last couple of days you have a really nice weekend.

Hope it gets better for you.

Best Wishes,

Steve

User

Posted 23 Jan 2015 at 17:39

Good news Kev
I am really pleased that you are now home and back on track. Just try and take it a little bit easier I worry that you may be pushing yourself a bit too hard during your chemo.
xx
Mandy Mo

User

Posted 23 Jan 2015 at 20:33

So Glad that you are back home Kev and things are easier but I have to agree with Mandy Mo , taking things a little easier for the time being doesn't mean giving up on your old way of life , it just means taking care of yourself and slowing down for now. These are strong treatments that you are having. Be kind to yourself.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 20 Feb 2015 at 04:50

So in similar words of the great Nikkon Steve, Today is an important day as I am 50.

5 months ago my wife asked what I was doing for my 50th and at that time 50 was just another number, I had plenty more to follow and as nothing was changing I was not that fussed.

Now of course this birthday has significance as with my realistic prognosis this needs to be my 50th, 60th, 70th, 80th and all those in between too only without the special events that go with or around getting older (retirement, grandchildren, kids special birthdays, weddings, graduations etc).

So today I have a good day planned with by best mate, brother and wives (all our wives not multiple for my brother!) but it will be hard not to get sucked into what will probably not be in the years to come.

I know that right now I am in lucky in so far as I feel ok, chemo has so far been kind (too kind perhaps, is the dose not strong enough), I ran 16 miles yesterday in training for the Brighton marathon in 7 weeks, have raised £14k so far for PC UK in the process (which makes me feel it's worthwhile as it may help others) and still have a normal life much of the time but dark thoughts are never that far away.

Reading most posts on this forum I can see that there is both hope and sadness and even with the hope goes much pain and effort along the way. I hope that like many others that staying fit and having an improved diet it will give me the best outcome however I can see that there are no guarantees.

So today is an important day, it will be a good day but due to the PC will have more significance, it may help me enjoy it more of course as time, especially feeling good time is not to be wasted ever again.

Thanks for reading if you got this far, Kev

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User

Posted 20 Feb 2015 at 08:21

Hi Kev,

I just wanted to say that I think you're amazing training for a marathon while having chemo.

My dad's just been diagnosed with aggressive PC. He has a Gleason score of 9 and we're just awaiting further scans to see if it's spread. He is 75 but runs regularly. He did his last half marathon in October. One thing that upset him was that he might have to give up running but you have given me hope that maybe he can carry on, but maybe at his age, stick to the 5Ks and 10Ks :)

I've just read through the whole thread and am pleased to hear that after the awful time you had when you first started chemo, you are now doing really well.

I hope you have a really special 50th birthday. You deserve it! Look after yourself.

Chardonnay

User

Posted 20 Feb 2015 at 08:31

Lovely post Kev. HAPPY BIRTHDAY. You are doing so well keep it going I am still not sure about the running and the chemo together but one thing for sure you are doing it your way and doing it in stylehttp://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif

BFN

Julie

NEVER LAUGH AT A LIVE DRAGON

User

Posted 20 Feb 2015 at 09:28

Happy 50th Birthday, Kev.

What a great post! I hope you have a fantastic day. Enjoy every moment. Sorry I can't be there to buy you a drink, perhaps on your 60th? That would give me a great deal of pleasure, for obvious reasons.

I will raise a glass to you this evening. Here's to many more Happy Birthdays !

Remember... Today is the first day of the rest of your life... can't think where I've read that before.

Steve

User

Posted 20 Feb 2015 at 09:30

HAPPY HAPPY BIRTHDAY Kevin.

After all you've been through the past few days it's great that you are better enough to enjoy your milestone, the first of many !!

Best wishes for your special day. I know you will enjoy every minute of it and not just because you feel you have to because you have PC.

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

User

Posted 20 Feb 2015 at 10:19

Happy birthday Irun - have a lovely day.

Perhaps, as you may not live to be 100, you could cram some extra life in now while you are still fit & healthy ..... take a leaf out of your brother's book and get a few extra wives while you still can!

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

User

Posted 20 Feb 2015 at 10:36

Kev
HAPPY BIRTHDAY or even Happy half centuary better than any England cricketer can achieve right now.

Wonderful post has made me smile as I am doing a 5k run in May with Ness Scott and the twins, expecting Si to be there to chuck revolting paint stuff at us. I ran 2k yesterday and walked the other 3 so each month I need to go up a gear. I could have done this without thinking about it 30 years ago!!

You are tolerating your chemo really well and that is probaby down to you being very fit and having no other medical issues. Positive Mental attitude is also important and I think all athletes have that in bucket loads. I only have to look at Usain Bolt and I get a serious mental attitude and me having a nickname like Mo makes that even more amusing.

Have a fabulous time with your famiy and their many wives and of course with your good Lady too.
xx
Mo

User

Posted 21 Feb 2015 at 01:40

Hi Lynn, sadly? I beat my bro as I am on wife 3 (all my doing) and my bronips on wife 2 however the happiest I have ever been in a relationship. Just got back from wild night out so still behaving like I am 19, football tomorrow eight a few mates Si mire Kaddish behaviour before back to reality of a long run followed by chemo. Thanks did bothering to post, I love this forum as it may not change reality but I never feel alone. Kev

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User

Posted 21 Feb 2015 at 08:01

Happy belated birthday kev...hope the football goes well...I'm just off to the gym then this afternoon j will be on the terraces watching the rugby and knocking Bristol for six...finish off my going to the pub as the house will be full of cooing ladies at a baby shower.....another American folly..

Sounds like you are doing really well

Any advice for a knackered achilles tendon

Bri

User

Posted 21 Feb 2015 at 11:56

Hi Kevin,

I was diagnosed just before my 60th and found myself hospitalised on the actual day due to a bad UTI! So I do know the poignancy of a birthday. Each birthday that has followed is greeted with much enthusiasm and that positivity keeps bringing the birthdays on, soon be by 63rd so managed to survive with bone mets for three years so far which is great. Maintaining your running whilst undergoing chemo says loads about your overall levels of fitness which will help you deal with the down times as well as can be expected. Wonderful fund raising too.

I recall celebrating my fiftieth as it was around 20 years since I had had testicular Cancer and for the first time saw light at the end of the tunnel. Within ten years that light was extinguished but looking at the quality of my birthdays and my life sustains me well and this is so important if you can keep those dark thoughts at bay.

Hope to meet up in June. I know you wanted to get to Newark but were not well enough then. Glad to see you are now thriving much better.

User

Posted 24 Feb 2015 at 21:57

Had my 3rd chemo session today, last 3 weeks trouble free and feel pretty good most of the time however worrying thing was that PSA is now 6.6 up from 3.3 just over a month ago. They had not tested my testosterone so will do so at chemo 4 in 3 weeks. I pointed out that I had started going for a p again a few times at night so they are also sorting out another MRI in the next week.
As a result a bit concerned again , no idea what the outcome would be, my consultant said that if I am still producing testosterone they will need to change biclutamide for something else but my worry is that the zoladex has already stopped working, who knows, would chemo not also reduce PSA?
Consultant also said when asked that zoladex has an 18 month average success rate, I thought it was longer but I guess it's only an average.
Chemo was fine but the jaw jaw has left me more into the unknown.
Any thoughts on any other things I should be doing/getting at this point would be welcome
Serves me right for turning 50 last week and having a good time!
Kev

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User

Posted 24 Feb 2015 at 23:02

Hi Kevin,

I'm really sorry to hear about your PSA rise, especially at a time when you were least expecting it.

I'm pretty much a novice when it comes to PSA levels with various treatments, but I know how worrying a rise can be. Hopefully, a change of medication will sort things out. My PSA almost doubled just before I started radiotherapy, so I know how you feel.

You have been such a good friend and always helped me through difficult times with your supportive posts, I only wish that I can do the same for you now.

I just wanted you to know that I wish you all the luck in the world that things will get back on course, you were doing so well with your treatment. I'm sure it will.

Try not to worry.

Your friend,

Steve

Edited by member 24 Feb 2015 at 23:11 | Reason: Not specified

Notification

Join the online community now.