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Advice on life on chemo please

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User
Posted 07 Nov 2017 at 01:26
Hello,

First time on a forum so don’t know where to start! Husband who is 50 was diagnosed with advanced prostate spread to bones and lymph’s in August of this year. He’s on hormone implant and has just started chemo last Friday, he feels very unwell at the moment hence my joining. this forum. Any advice on what the reality of the next three months will bring will be greatly appreciated.

Thank you

User
Posted 07 Nov 2017 at 21:11

Hi Lee

Sorry you find yourself on this site but I can attest to the brilliant support and excellent advice that members will provide. What happens happens, but at least having some knowledge makes everything a bit less scary. As Dave has said, there's a really good infusion by infusion review here: http://community.prostatecanceruk.org/posts/t12197-Docetaxel-Chemo---the-highs-and-the-lows#post152202 - including useful tips about what to do and not to do.

One thing I would add from my own experience is that it's best not to suffer in silence - if anything unexpected is happening, pain, nose-bleeds, exceptional tiredness, do get in touch with your onco immediately. My OH did a bit of that at first but soon learned that either the medics can sort out the problem quickly, or they can't in which case it might be an emergency. Either way, phone them!

Good luck with the rest of the treatments; do hope that things settle down and that the chemo does its job. And do look after yourself too. (that's the bit of advice that we all tend to ignore!).

Hugs

xxx

User
Posted 08 Nov 2017 at 08:17
Lee

I started this journey with a PSA of 1547 in March/17 which is now down to 94 and thank god still dropping!. I’ve completed my first 6 infusions of chemo but still have a hormone injection every 4 weeks. Click on my pages to see how I coped with chemo etc. Which luckily for me was fairly routine. Hope it a goes well for you.

Valleyboy

User
Posted 08 Nov 2017 at 11:23
Hi Lee

Yes the bone pain is probably down to the injection to increase the white blood cell count. I found that it lasted for approx 2 weeks before it subsided and during that time every bone in my body hurt, including teeth, ears etc, so I asked my Onco if I could receive some form of pain relief, which he declined stating tha it wasn't necessary to have the injections as it is not a requirement. I have found my white blood cell count has remained at approx 18000 over my last 5 cycles and have not experienced that particular side effect again, although I have been experiencing others.

All the best

Roy

User
Posted 10 Nov 2017 at 22:08
Hi I had chemo Jan-Apr 2015, mets in lymphs T4, injections caused me so much pain that I only ever had 2! After that, lower dose chemo and all ok for all 6 cycles. PSA 3 years on 0.11, started at 342, I was 49 years old.

I was worried lower dose chem would not work after they reduced it so I had no more bone injections but clearly it did.

I have run loads of marathons and some crazy ultra marathons in Iceland and the Sahara so please believe that for some it's just about getting through chemo and then carrying on. I actually did 2 marathons on weeks 13 and 15 of chemo so please tell hubby to live life to as full as he can deal with.

Keep posting

Kev (now 52 and running 350 miles across the arctic next march)

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 07 Nov 2017 at 16:57

Lee, what the next three months will bring depends on lots of things. You have told us very little about your husband's diagnosis, so it is difficult to advise. What does "very unwell" in this case mean? Many men breeze through the cycles of chemotherapy; others hit snags. I developed pulmonary embolisms, for example (a known possible side effect). Others face problems with reduced white blood cells. How well your husband does may depend on how fit he is apart from the PCa.

Good Luck

AC

User
Posted 07 Nov 2017 at 18:54

Lee,

There are plenty of threads on the Chemo experience out there,

One started by ColU_FC is one of the very best.

Regards

Dave

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"
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User
Posted 07 Nov 2017 at 16:57

Lee, what the next three months will bring depends on lots of things. You have told us very little about your husband's diagnosis, so it is difficult to advise. What does "very unwell" in this case mean? Many men breeze through the cycles of chemotherapy; others hit snags. I developed pulmonary embolisms, for example (a known possible side effect). Others face problems with reduced white blood cells. How well your husband does may depend on how fit he is apart from the PCa.

Good Luck

AC

User
Posted 07 Nov 2017 at 17:31
Hi,

He was very fit and well with no symptoms at all. He went for a routine blood test and asked for his psa to be tested as he had seen a lot on the news recently. The doc was hesitant as there is no cancer of any kind in his family history. To cut it short we then found he had a psa of 454 that rose to 500 in 1 week, Gleason score of 4 + 4 advanced pc to lymph’s and ribs.

He’s been on Zoladex since August, usual hot flushes and some tiredness.

He started chemo Friday and given steroids day before, of and day after. He is also on the 7 day bone boosting injection.

The unwell feeling is bone pain head to toe especially his teeth, back and legs. Nose bleeds started yesterday also. This started Sunday and has pretty much kept him house bound over the last two days. Reading up it looks like it’s the side effects of the bone injections not the chemo but we have nothing to compare it too!

My dad has brain cancer stage 4 and was given 6 weeks to live but I’m pleased to say 3 years on and he’s still here of a fashion. After 3 years of chemo with him I thought I knew it all in my innocence! It’s the fear of the unknown!

Totally different as a daughter carer to a wife carer!

Bring it on!

Thank you

User
Posted 07 Nov 2017 at 18:54

Lee,

There are plenty of threads on the Chemo experience out there,

One started by ColU_FC is one of the very best.

Regards

Dave

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"
User
Posted 07 Nov 2017 at 21:11

Hi Lee

Sorry you find yourself on this site but I can attest to the brilliant support and excellent advice that members will provide. What happens happens, but at least having some knowledge makes everything a bit less scary. As Dave has said, there's a really good infusion by infusion review here: http://community.prostatecanceruk.org/posts/t12197-Docetaxel-Chemo---the-highs-and-the-lows#post152202 - including useful tips about what to do and not to do.

One thing I would add from my own experience is that it's best not to suffer in silence - if anything unexpected is happening, pain, nose-bleeds, exceptional tiredness, do get in touch with your onco immediately. My OH did a bit of that at first but soon learned that either the medics can sort out the problem quickly, or they can't in which case it might be an emergency. Either way, phone them!

Good luck with the rest of the treatments; do hope that things settle down and that the chemo does its job. And do look after yourself too. (that's the bit of advice that we all tend to ignore!).

Hugs

xxx

User
Posted 08 Nov 2017 at 08:17
Lee

I started this journey with a PSA of 1547 in March/17 which is now down to 94 and thank god still dropping!. I’ve completed my first 6 infusions of chemo but still have a hormone injection every 4 weeks. Click on my pages to see how I coped with chemo etc. Which luckily for me was fairly routine. Hope it a goes well for you.

Valleyboy

User
Posted 08 Nov 2017 at 11:23
Hi Lee

Yes the bone pain is probably down to the injection to increase the white blood cell count. I found that it lasted for approx 2 weeks before it subsided and during that time every bone in my body hurt, including teeth, ears etc, so I asked my Onco if I could receive some form of pain relief, which he declined stating tha it wasn't necessary to have the injections as it is not a requirement. I have found my white blood cell count has remained at approx 18000 over my last 5 cycles and have not experienced that particular side effect again, although I have been experiencing others.

All the best

Roy

User
Posted 10 Nov 2017 at 21:43

Thanks all for your support and advice it’s been a real help reading your post and profiles. Your all really an inspiration.

Injections finished today and the bone pain seams to have subsided a little, the nose bleeds have stopped.

Hopefully over the next two weeks before the next cycle he makes some recovery before we do it all again.

Thanks

User
Posted 10 Nov 2017 at 22:08
Hi I had chemo Jan-Apr 2015, mets in lymphs T4, injections caused me so much pain that I only ever had 2! After that, lower dose chemo and all ok for all 6 cycles. PSA 3 years on 0.11, started at 342, I was 49 years old.

I was worried lower dose chem would not work after they reduced it so I had no more bone injections but clearly it did.

I have run loads of marathons and some crazy ultra marathons in Iceland and the Sahara so please believe that for some it's just about getting through chemo and then carrying on. I actually did 2 marathons on weeks 13 and 15 of chemo so please tell hubby to live life to as full as he can deal with.

Keep posting

Kev (now 52 and running 350 miles across the arctic next march)

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 12 Nov 2017 at 11:57
Wow Kev,

You are an inspiration!

Good luck with the training and the artic next year!

My husband is a cyclist and hopefully will get back on his bike next week literally!!! Just a little peddle will make him feel better I’m sure.

Thanks

 
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