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My story - 16 years with metastatic prostate cancer - I’ve had just about everything

User
Posted 22 Sep 2018 at 11:39

I was in the process of updating my profile when I realised it probably made more sense to start a new thread without a strange title mentioning Olaparib and AZ-something or other. 

So, apologies for duplication, but hope this helps. 

Diagnosis

Date: November 2002

Age at diagnosis: 37

Age now: 53

Treatment

  1. Chemotherapy - Paclitaxel, Carboplatin, Estramustine - for 6 months
  2. Intensity Modulated Radiotherapy - 81gy over three months
  3. Zolodex - with a break in 2009
  4. Zometa - lots at first, now every year or so
  5. Cassodex - added to Zolodex for a short time - didn't help
  6. Abiraterone - worked for almost 4 years (switching from prednisalone to dexamethasone extended its efficacy)
  7. Enzalutamide - for four months. Had all the major side effects except fits, and it didn’t do much for the psa so stopped 
  8. BRCA2 mutation confirmed. 
  9. Trial for AZD6738 and Olaparib (a PARP inhibitor that was supposed to work well with BRCA2) - helped my mets a bit, but not the PSA.
  10. Chemotherapy - Carboplatin and Docetaxel regime. Had to stop after 8 cycles as I was feeling a bit grim/needed regular blood transfusions. 
  11. Three ribs, a bit of spine and some lung removed to clear tumor/met in May 2017.
  12. Brother diagnosed and had his prostate removed - his genetic tests are ongoing. 
  13. Cyber knife for met at T6 in June 2018 - oncologist says it didn’t work, radiotherapist not so sure. 

I think that's it. There might be more. My memory is shot to pieces as a result of the hormone treatment over 16 years.

Latest News

I’m still struggling with the effects of my surgery, more than a year after the operation. In simple terms, the operation has resulted in an abdominal bulge linked to the removal of nerves when the ribs etc. were removed.

The absence of nerves means some of the muscles in my stomach aren't working - so the bits and pieces behind that area are not being held in place. The hope was the nerves would grow back/other nerves would compensate, but that hasn’t happened. So, there’s a lot of discomfort, plus my breathing has been adversely affected. Adjustments to my sleep apnea machine have recently been made to help with the latter, I’m going to see a surgeon about the former. I’m not keen on another procedure, but it may be a case of having to. One thought I’ve had is to possibly speak to surgeons who work on battlefield injuries and recovery from those. 

Given these side effects, to say nothing of the post operation pain and having to wean myself off fentanyl etc. I sometimes wonder if it was worth having the operation. After a few minutes of self-pity, the answer is always “Of course it was”, I’m sitting here almost 18 months later with a psa of only 4, and without a large tumor that was enveloping my ribs, spine and lung. It wasn’t easy, but I would do it again, if needed. 

On the treatment front, the oncologist has suggested a course of Cabazitaxel or a trial. I was very lucky to be offered places on a couple of immunotherapy trials. However, I’ve decided to try radium 223 first. Olaparib makes your cancer less sensitive to gamma radiation, but this is alpha radiation, so we’ll see. 

I know that this is only a “holding operation” so that, at some point, I will have to go on one of the trials suggested. But, radium 223 seems to have less of an impact on quality of life, and my psa is quite low/mets are relatively small at the moment - so it’s probably a good time to give it a go. After that, the Ac-225-PSMA-617 PSMA targeting looks quite attractive. I’m following reports on that from numerous places around the world. Hopefully I can get onto a trial after the radium 223 treatment has run its course. If not, then immunotherapy/checkpoint inhibitor stuff will be the order of the day. I’m not going to have another round of chemo, as the impact on quality of life is not worth the likely gains. That’s not giving up - more an active choice of quality over quantity. And I’ll do all the trial stuff before I get to that point. By the way, if anyone has advice on radium 223, please let me know. 

Other stuff

When I was first diagnosed 16 years ago, I saw an oncologist at Memorial Sloan Kettering who devised the aggressive chemo I had in 2003 (number one in the list above). That saved my life/kept me alive until Abiraterone came along (which, in turn, helped me to be here now). 

He also advised me to take up cycling - telling me that he wasn’t sure why this had a positive impact on survival, but it did. I took his advice to the extreme, ultimately riding up a number of the famous mountain passes of the Tour de France, and dieting hard so that I could keep up with friends at a local cycling club I’d joined. My kids told me I looked anorexic, but I had to lose weight to stay with my friends, because the lack of testosterone in my body meant I was constantly anemic and it was hard to build/maintain muscle.

I’m convinced this has helped me stay alive for so long - which is why I’m worried about the fact that I haven’t been able to ride my bike for the last three years, due to the side effects of treatment, operations etc. I’ve also put on a stone and a half in weight over that period. I understand that there are some ongoing studies into the impact of exercise on pca. My experience is that my body just felt like it was functioning better/properly when I was fit and thin. So, the aim is to get going on the bike and weight front ASAP. I rode my bike for the first time in three years in August 2018, I’m hoping I can build on that despite having to have more treatment. 

One last thing, I know there are competing views on the impact of supplements, so what follows might not be music to some peoples ears. At one point or another, I’ve tried everything. At the moment, I’m focusing on a combination of Ursolic Acid, Reservatrol and Curcumin. I’m convinced this has helped keep my psa low/unchanged since the time the oncologist told me the cyberknife treatment hadn’t worked - I know, I know, it’s the scans that are more important, but there you go, I believe these supplements help. 

Actually, there’s another thing. I’m having trouble breathing when going upstairs. I’ve had lots of tests for this, and everything is supposed to be okay - it’s just a matter of getting fit again after a few years of tough treatment. I’m assuming that’s right, but playing close attention to it as we all know about the impact of long-term hormone treatment on heart health.

Finally, finally, finally, I’m convinced the treatment I’ve had has had an adverse impact on mental acuity. I had tests for this a few years back which were inconclusive - the first test showed I had “clunky thinking” the second, a few years later, that I’d improved. I think I was better in the second test because I knew what was coming and planned for that. The consultant said that could have been the case, but she could only report the test results. Since then, things have deteriorated. 

When I was taking Enzalutimide, things were so bad I thought I might have dementia/Alzheimer’s. Some of it is obviously age, but my wife can say something to me one day and I have no recollection of it the next. Literally nothing. Not even the suggestion of a memory. This makes things quite difficult - especially at work, where my boss regularly asks me to update a piece of work that I have no memory of ever having done. I’m not sure there is an answer to this, just thought I’d share it in case it rings true with anyone else, and they have suggestions on ways to get round it/improve things. 

In a similar vein, I have peripheral neuropathy problems in my feet post the last round of chemo; persistently low potassium and magnesium levels post Abiraterone – despite regular supplementation; and high blood pressure post Abiraterone – I did take medication for this, and am probably going to have to re-start that.

Right, that really is it, if anyone has any advice or comments on any of this please let me know.

Best Regards,

David

User
Posted 22 Sep 2018 at 11:39

I was in the process of updating my profile when I realised it probably made more sense to start a new thread without a strange title mentioning Olaparib and AZ-something or other. 

So, apologies for duplication, but hope this helps. 

Diagnosis

Date: November 2002

Age at diagnosis: 37

Age now: 53

Treatment

  1. Chemotherapy - Paclitaxel, Carboplatin, Estramustine - for 6 months
  2. Intensity Modulated Radiotherapy - 81gy over three months
  3. Zolodex - with a break in 2009
  4. Zometa - lots at first, now every year or so
  5. Cassodex - added to Zolodex for a short time - didn't help
  6. Abiraterone - worked for almost 4 years (switching from prednisalone to dexamethasone extended its efficacy)
  7. Enzalutamide - for four months. Had all the major side effects except fits, and it didn’t do much for the psa so stopped 
  8. BRCA2 mutation confirmed. 
  9. Trial for AZD6738 and Olaparib (a PARP inhibitor that was supposed to work well with BRCA2) - helped my mets a bit, but not the PSA.
  10. Chemotherapy - Carboplatin and Docetaxel regime. Had to stop after 8 cycles as I was feeling a bit grim/needed regular blood transfusions. 
  11. Three ribs, a bit of spine and some lung removed to clear tumor/met in May 2017.
  12. Brother diagnosed and had his prostate removed - his genetic tests are ongoing. 
  13. Cyber knife for met at T6 in June 2018 - oncologist says it didn’t work, radiotherapist not so sure. 

I think that's it. There might be more. My memory is shot to pieces as a result of the hormone treatment over 16 years.

Latest News

I’m still struggling with the effects of my surgery, more than a year after the operation. In simple terms, the operation has resulted in an abdominal bulge linked to the removal of nerves when the ribs etc. were removed.

The absence of nerves means some of the muscles in my stomach aren't working - so the bits and pieces behind that area are not being held in place. The hope was the nerves would grow back/other nerves would compensate, but that hasn’t happened. So, there’s a lot of discomfort, plus my breathing has been adversely affected. Adjustments to my sleep apnea machine have recently been made to help with the latter, I’m going to see a surgeon about the former. I’m not keen on another procedure, but it may be a case of having to. One thought I’ve had is to possibly speak to surgeons who work on battlefield injuries and recovery from those. 

Given these side effects, to say nothing of the post operation pain and having to wean myself off fentanyl etc. I sometimes wonder if it was worth having the operation. After a few minutes of self-pity, the answer is always “Of course it was”, I’m sitting here almost 18 months later with a psa of only 4, and without a large tumor that was enveloping my ribs, spine and lung. It wasn’t easy, but I would do it again, if needed. 

On the treatment front, the oncologist has suggested a course of Cabazitaxel or a trial. I was very lucky to be offered places on a couple of immunotherapy trials. However, I’ve decided to try radium 223 first. Olaparib makes your cancer less sensitive to gamma radiation, but this is alpha radiation, so we’ll see. 

I know that this is only a “holding operation” so that, at some point, I will have to go on one of the trials suggested. But, radium 223 seems to have less of an impact on quality of life, and my psa is quite low/mets are relatively small at the moment - so it’s probably a good time to give it a go. After that, the Ac-225-PSMA-617 PSMA targeting looks quite attractive. I’m following reports on that from numerous places around the world. Hopefully I can get onto a trial after the radium 223 treatment has run its course. If not, then immunotherapy/checkpoint inhibitor stuff will be the order of the day. I’m not going to have another round of chemo, as the impact on quality of life is not worth the likely gains. That’s not giving up - more an active choice of quality over quantity. And I’ll do all the trial stuff before I get to that point. By the way, if anyone has advice on radium 223, please let me know. 

Other stuff

When I was first diagnosed 16 years ago, I saw an oncologist at Memorial Sloan Kettering who devised the aggressive chemo I had in 2003 (number one in the list above). That saved my life/kept me alive until Abiraterone came along (which, in turn, helped me to be here now). 

He also advised me to take up cycling - telling me that he wasn’t sure why this had a positive impact on survival, but it did. I took his advice to the extreme, ultimately riding up a number of the famous mountain passes of the Tour de France, and dieting hard so that I could keep up with friends at a local cycling club I’d joined. My kids told me I looked anorexic, but I had to lose weight to stay with my friends, because the lack of testosterone in my body meant I was constantly anemic and it was hard to build/maintain muscle.

I’m convinced this has helped me stay alive for so long - which is why I’m worried about the fact that I haven’t been able to ride my bike for the last three years, due to the side effects of treatment, operations etc. I’ve also put on a stone and a half in weight over that period. I understand that there are some ongoing studies into the impact of exercise on pca. My experience is that my body just felt like it was functioning better/properly when I was fit and thin. So, the aim is to get going on the bike and weight front ASAP. I rode my bike for the first time in three years in August 2018, I’m hoping I can build on that despite having to have more treatment. 

One last thing, I know there are competing views on the impact of supplements, so what follows might not be music to some peoples ears. At one point or another, I’ve tried everything. At the moment, I’m focusing on a combination of Ursolic Acid, Reservatrol and Curcumin. I’m convinced this has helped keep my psa low/unchanged since the time the oncologist told me the cyberknife treatment hadn’t worked - I know, I know, it’s the scans that are more important, but there you go, I believe these supplements help. 

Actually, there’s another thing. I’m having trouble breathing when going upstairs. I’ve had lots of tests for this, and everything is supposed to be okay - it’s just a matter of getting fit again after a few years of tough treatment. I’m assuming that’s right, but playing close attention to it as we all know about the impact of long-term hormone treatment on heart health.

Finally, finally, finally, I’m convinced the treatment I’ve had has had an adverse impact on mental acuity. I had tests for this a few years back which were inconclusive - the first test showed I had “clunky thinking” the second, a few years later, that I’d improved. I think I was better in the second test because I knew what was coming and planned for that. The consultant said that could have been the case, but she could only report the test results. Since then, things have deteriorated. 

When I was taking Enzalutimide, things were so bad I thought I might have dementia/Alzheimer’s. Some of it is obviously age, but my wife can say something to me one day and I have no recollection of it the next. Literally nothing. Not even the suggestion of a memory. This makes things quite difficult - especially at work, where my boss regularly asks me to update a piece of work that I have no memory of ever having done. I’m not sure there is an answer to this, just thought I’d share it in case it rings true with anyone else, and they have suggestions on ways to get round it/improve things. 

In a similar vein, I have peripheral neuropathy problems in my feet post the last round of chemo; persistently low potassium and magnesium levels post Abiraterone – despite regular supplementation; and high blood pressure post Abiraterone – I did take medication for this, and am probably going to have to re-start that.

Right, that really is it, if anyone has any advice or comments on any of this please let me know.

Best Regards,

David

User
Posted 22 Sep 2018 at 14:16

Hi David,  Your story must be worth a special place on the site.  

Removal of bone to remove tumours.  Theories about cycling and supplements.  Enough material for a dozen threads.  Thanks for posting it.

Regards

Peter

Edited by member 22 Sep 2018 at 14:23  | Reason: Not specified

User
Posted 22 Sep 2018 at 14:49

Just in awe man. Checked out your profile, we worked at the same firm at the same time as well. 

You are right Ac-225-PSMA-617 looks like a claimed tolerable (low toxicity) way forward, it wins over 177

(a) It can target metastases in any tissue or fluid, including undetectable, systemic micrometastases. (b) Because its alpha particles are very short range, it doesn’t destroy very much healthy bone marrow. (c) Because the alpha particles are highly energetic, they destroy nearby cells very effectively. (d) Because it attaches to PSMA instead of calcium-active sites in bone or other tissue, it may be less toxic to other healthy tissue.

I dont see given the tolerability why you don’t do (ultimately) R223, L177 and 617. Fractional dosage appears to be a way of getting even more out of 177 by the way, not just one rinse. Actually retract a bit, you have deep bone mets so 617 is the call to make.

I don’t need to tell you what the odds are on you being here at 16 yrs with BRCA2 (did you have BRCA1 as well). Assuming you know Prof Ros E at Marsden if not then she needs to be writing a book about this. Time and time again they are recalibrating the approach to PCa. Aggressive treatment lines and overloading modalities appears to offer better outcomes.

Where does your PSA go to when off meds and I assume you are highly PSMA sensitive when scanned. Although you say low mets count. Seems controlled

Fresh

Edited by member 22 Sep 2018 at 15:25  | Reason: Not specified

Base jumping without a parachute should be frowned at, never criticised. Fresh

User
Posted 22 Sep 2018 at 15:00
A thought provoking account of what some men have to undergo in order to buy time. However, it illustrates how new and improved treatments can help survival albeit with side effects. You still have the radium 223 if appropriate and hope any further treatment helps extend your life whilst providing sufficient quality to make it worthwhile.

I would try to further investigate what you thought might be Alzeimers/Dementia as being down to your treatment or something that affects many as we grow older. Certainly, in the case of the latter medication is available that can slow progression but as yet unfortunately not completely stop it.

Barry
User
Posted 22 Sep 2018 at 18:40

Have you got Keytruda and ProvenGe on the list. Marsden can profile you for possible takup on Keytruda J-d-B @ Marsden is your man.

Fresh

Edited by member 22 Sep 2018 at 18:42  | Reason: Not specified

Base jumping without a parachute should be frowned at, never criticised. Fresh

User
Posted 14 Nov 2018 at 08:26
Thanks for the update. You have been through so much but the determination to get on the bike and exercise etc. is great.

I hope the operation on your spine is a success and you recover well from it.

I can’t really answer your question but hopefully someone will reply who has had experience of this or has information to impart.

Ian

Ido4

User
Posted 14 Nov 2018 at 08:51
Thanks Ian,

You wouldn’t believe how much I would give to be riding my bike regularly again. It’s not just the endorphin rush, or the magical experiences I have with my friends while we’ve been riding up beautiful mountain passes, or that I think it has a massive impact on my PCa, it’s also that so many people have told me I will never be able to do it again ... and so, I’m going to prove them wrong :).

Thanks again.

David.

User
Posted 14 Nov 2018 at 18:18

All the power to your elbow High Cadence! A true warrior!

User
Posted 20 Nov 2018 at 08:37
Thanks for the post David. Food for thought and Iam off to investigate now. Good to know about cycling and was warned away from it. Might be able to join some pal now!

Steven

User
Posted 20 Nov 2018 at 10:32

D

Thank you for your post.  Although you’ve been through a lot, your story inspires and gives hope.

Ulsterman

User
Posted 11 Oct 2019 at 17:56

David 
Thank you for your post I must have missed it
Great post as usual
Keep going
Regards Barry

User
Posted 11 Oct 2019 at 19:45

Thanks Barry - i’ll do my best. Hope you are doing well. D. 

User
Posted 12 Oct 2019 at 18:20

Only just encountered this thread. Your fortitude and courage is inspirational. Best wishes - Pete

User
Posted 23 Oct 2019 at 16:24

All of your information was extremely helpful to us.  Greatly appreciate your time in doing so and all the detail.  What a blessing you have had this much time (granted a lot of treatment with side effects).  Thank you!

Show Most Thanked Posts
User
Posted 22 Sep 2018 at 14:16

Hi David,  Your story must be worth a special place on the site.  

Removal of bone to remove tumours.  Theories about cycling and supplements.  Enough material for a dozen threads.  Thanks for posting it.

Regards

Peter

Edited by member 22 Sep 2018 at 14:23  | Reason: Not specified

User
Posted 22 Sep 2018 at 14:49

Just in awe man. Checked out your profile, we worked at the same firm at the same time as well. 

You are right Ac-225-PSMA-617 looks like a claimed tolerable (low toxicity) way forward, it wins over 177

(a) It can target metastases in any tissue or fluid, including undetectable, systemic micrometastases. (b) Because its alpha particles are very short range, it doesn’t destroy very much healthy bone marrow. (c) Because the alpha particles are highly energetic, they destroy nearby cells very effectively. (d) Because it attaches to PSMA instead of calcium-active sites in bone or other tissue, it may be less toxic to other healthy tissue.

I dont see given the tolerability why you don’t do (ultimately) R223, L177 and 617. Fractional dosage appears to be a way of getting even more out of 177 by the way, not just one rinse. Actually retract a bit, you have deep bone mets so 617 is the call to make.

I don’t need to tell you what the odds are on you being here at 16 yrs with BRCA2 (did you have BRCA1 as well). Assuming you know Prof Ros E at Marsden if not then she needs to be writing a book about this. Time and time again they are recalibrating the approach to PCa. Aggressive treatment lines and overloading modalities appears to offer better outcomes.

Where does your PSA go to when off meds and I assume you are highly PSMA sensitive when scanned. Although you say low mets count. Seems controlled

Fresh

Edited by member 22 Sep 2018 at 15:25  | Reason: Not specified

Base jumping without a parachute should be frowned at, never criticised. Fresh

User
Posted 22 Sep 2018 at 15:00
A thought provoking account of what some men have to undergo in order to buy time. However, it illustrates how new and improved treatments can help survival albeit with side effects. You still have the radium 223 if appropriate and hope any further treatment helps extend your life whilst providing sufficient quality to make it worthwhile.

I would try to further investigate what you thought might be Alzeimers/Dementia as being down to your treatment or something that affects many as we grow older. Certainly, in the case of the latter medication is available that can slow progression but as yet unfortunately not completely stop it.

Barry
User
Posted 22 Sep 2018 at 17:15

Thank you Peter.

D

User
Posted 22 Sep 2018 at 17:19

Thanks Barry.

Hadn't thought about meds for that - I’ll put it onto my ever expanding research list. 

I’m sure the treatment has had a big impact.

The type of work I do means it’s fairly easy to calibrate from my end - plus, I think, you just know  

Rgds,

D  

 

User
Posted 22 Sep 2018 at 17:36

Thanks Kevin,

Where was that? BCap? I can’t see your surname, so can’t work it out. 

I do know Ros. I donated some blood to her right at the start, but asked not to be told the results as there were some problematic issues if you knew back in those days. Also, no-one was thinking about genetic-based treatment, so there didn’t seem to be much point in knowing.

She is currently doing the testing on my brother. 

If you can tell me how I can post a chart from Excel for Mac, I’ll show you how psa has responded to all the different regimes. 

Rgds,

D

User
Posted 22 Sep 2018 at 18:40

Have you got Keytruda and ProvenGe on the list. Marsden can profile you for possible takup on Keytruda J-d-B @ Marsden is your man.

Fresh

Edited by member 22 Sep 2018 at 18:42  | Reason: Not specified

Base jumping without a parachute should be frowned at, never criticised. Fresh

User
Posted 22 Sep 2018 at 18:49

Hi Kevin,

Yep, all that stuff is on the list, but at the moment I see that coming after radium and PSMA targeting (if I can get it). 

Thanks.

User
Posted 13 Nov 2018 at 21:37

When I put up my last post, I expected the follow-up to be fairly straightforward - you know, radium 223 has worked a bit, but only a bit, and I’m moving onto something else/PSMA targeting/immunotherapy. But, that hasn’t really happened. The prostate cancer had other ideas.

I’ll come to that, but first I want to say a little bit about the radium treatment. For me, it was fairly uncomplicated. The main side effect was lethargy - especially for the first few days after the infusion - with the feeling that you’d literally just walked into a brick wall. First time round, I decided to rest up for a few days, but, I soon found out that if you push through the lethargy - by going to the gym or similar - you actually feel much much better. So, I’ve just carried on exercising as often as possible ever since (I had my second infusion last Wednesday). Apart from that, I’ve had a bit of a temperature, a bit of bone pain, and a bit of brain fuzz at the start of the cycle, although the latter could just as easily be stress related as treatment related. So, that’s the radium. Relatively easy overall. 

Whilst all that was going on I decided that I needed to try again to sort out some long stranding problems that I’ve let slide for too long. There was mixed news on this front. A surgeon told me that there was nothing that could be done about the loss of nerves/muscle control in my abdomen, and that I basically just had to suck it up (my words, not his). I have to admit, I had a little cry after that one. 

More positive new came from an endocrinologist who worked out I wasn’t diabetic or pre diabetic, which is good, although I would like to have a reason to try some metformin. He also decided that I could produce enough cortisol on my own to be able try coming off steroids (I’d previously been diagnosed with adrenal insufficiency after years on Abiraterone with a steroid). Finally, he thinks that my continued low levels of potassium and magnesium years after ending Abi is probably a reflection of damage to the kidneys caused by Carboplatin, which I’ve had twice. I have vague memories of being warned about this before the second round of this treatment, but had completely forgotten about it. 

We’re not quite there yet in terms of a definitive answer, but if the latest blood test I’ve had shows I’m still low on these minerals/things haven’t changed having stopped the steroids, I will either take something to help me retain them or take something to offset their impact i.e a narrowing of blood vessels. I’m hoping this will help with the shortness of breath issues I’ve had for a while. 

Put all of this together, and I was feeling pretty confident about getting out on the bike again. So much so, that I put new rim tape, tubes, and tyres on my two best bikes, batteries in the power meter and charged up the bike computer. I even bought a new jersey (two sizes bigger than the last one I bought).

And then the cancer had its say. To cut a long story short, my latest MRI scan suggested some new tumour growth was pressing on my spinal canal, making it thinner/narrower. The radiologists suggested I see a spinal surgeon with a view to sorting out what should happen next. So, I had a more detailed MRI of the spine yesterday, then this morning discussed the “pictures” with the surgeon who removed a bit of my spine last year. The upshot is that the new tumour/growth will have to be removed and some screws put into the spine. I’ve got a PET scan on Monday to determine if a couple of vertebra around the new tumour growth are “active” (it looks like it will be a PSMA scan but they are not sure yet). If they are active, the surgeon will take those out too.

Obviously this was not what I’d expected or hoped for, and I’m dreading the after-effects of another operation. But, there is no plan B. This has to be sorted out before I get spinal cord compression. I know a cyclist who has had a similar operation, but, if anyone here has gone through it, I’d really like to know what to watch out for, things I should do before and after to help recovery etc.

D

User
Posted 14 Nov 2018 at 08:26
Thanks for the update. You have been through so much but the determination to get on the bike and exercise etc. is great.

I hope the operation on your spine is a success and you recover well from it.

I can’t really answer your question but hopefully someone will reply who has had experience of this or has information to impart.

Ian

Ido4

User
Posted 14 Nov 2018 at 08:51
Thanks Ian,

You wouldn’t believe how much I would give to be riding my bike regularly again. It’s not just the endorphin rush, or the magical experiences I have with my friends while we’ve been riding up beautiful mountain passes, or that I think it has a massive impact on my PCa, it’s also that so many people have told me I will never be able to do it again ... and so, I’m going to prove them wrong :).

Thanks again.

David.

User
Posted 14 Nov 2018 at 18:18

All the power to your elbow High Cadence! A true warrior!

User
Posted 14 Nov 2018 at 18:26
Thank you very much flexi. We are all warriors.
User
Posted 20 Nov 2018 at 08:37
Thanks for the post David. Food for thought and Iam off to investigate now. Good to know about cycling and was warned away from it. Might be able to join some pal now!

Steven

User
Posted 20 Nov 2018 at 10:32

D

Thank you for your post.  Although you’ve been through a lot, your story inspires and gives hope.

Ulsterman

User
Posted 20 Nov 2018 at 17:49

Go for it Stephen,You wont regret it. D. 

 

Edited by member 20 Nov 2018 at 17:50  | Reason: Not specified

User
Posted 20 Nov 2018 at 17:51

Thank you Ulsterman.  We all inspire each other. 

User
Posted 26 Nov 2018 at 17:19

Originally Posted by: Online Community Member

 

Obviously this was not what I’d expected or hoped for, and I’m dreading the after-effects of another operation. But, there is no plan B. This has to be sorted out before I get spinal cord compression. I know a cyclist who has had a similar operation, but, if anyone here has gone through it, I’d really like to know what to watch out for, things I should do before and after to help recovery etc.

D

 

Hi, There - have you been given a MSCC card or leaflet? This will tell you what to do if there is imminent threat of spinal cord compression while you wait for surgery. If not I assume your spinal problem is not as acute as that and your surgeon is planning to stabilise your spine more as a routine preventative than a 'rescue'.

User
Posted 11 Oct 2019 at 17:56

David 
Thank you for your post I must have missed it
Great post as usual
Keep going
Regards Barry

User
Posted 11 Oct 2019 at 19:45

Thanks Barry - i’ll do my best. Hope you are doing well. D. 

User
Posted 12 Oct 2019 at 18:20

Only just encountered this thread. Your fortitude and courage is inspirational. Best wishes - Pete

User
Posted 12 Oct 2019 at 18:25

Thanks Pete. Just trying hard to stay alive - like all of us. 

User
Posted 23 Oct 2019 at 16:24

All of your information was extremely helpful to us.  Greatly appreciate your time in doing so and all the detail.  What a blessing you have had this much time (granted a lot of treatment with side effects).  Thank you!

User
Posted 23 Oct 2019 at 17:46

Thank you SP - I’m glad you found it helpful. I’ve been very lucky. Good luck to you.  David. 

 
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