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After Docetaxel

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User
Posted 29 May 2018 at 17:33

My husband has his final (6th) docetaxel in a few days time. He has had a rough time and feeling weak and pretty much rung out now and still one to go. Still he has just about done it!  He has already had an appointment through for CT and bone scans at the end of June. 

I was wondering what experiences folks have had after this stage. I suppose it will very much depend on the scan results but I’d love to hear what might happen, or what others have experienced. We went into chemo reeling from the diagnosis not able to think this far ahead. When will the energy return?  How often will we have appointments? Will we ever have another holiday? Suddenly after the structure of every three weeks another cycle starting I realise im not very prepared for the next step And it’s scary. SusieW

User
Posted 29 May 2018 at 19:23
Suzie.

I finished my 1st 6 cycles of Docetaxel in Sept 17. I then, other than regular hormone injections had a 6 month treatment holiday.

Unfortunately however my PSA started to rise again in Feb 18 so I’m now on another 6 chemo infusions,(Cabazitaxel) with No 5 of 6 due tmos. Fortunately although my PSA is still high at 626, ( it was 1547 on diagnosis in Jan 17, with extensive bone mets, ) I’m lucky In that at the moment I’m tolerating chemo very well and am still playing golf, gardening, walking the dog etc. And have no dibillitating pain. In fact the main side effect in my case with both Docetaxel and Cabazitaxel is tiredness in the afternoon which at one stage I fought against whereas now I go with the flow and if I need a nap I just have one.

I too felt a bit lost after completing my initial 6 chemo infusions as the hospital/staff where I have had all my treatment were/are brilliant, but I found strength in both this and local forums. Also after you finish chemo you should have regular checkups and appointments with your Onco. If not ask why?

Hope it all works out for you

J.

User
Posted 29 May 2018 at 19:41

My husband finished his 6 cycles of docetaxel last September. At the end of treatment he was very breathless and easily fatigued. A worrying time. We were lucky that we were able to go on holiday for 3 weeks in November to somewhere warm to relax. Since our return he has regained his strength. We swim,  walk miles and garden and try to keep as fit as possible. The last scan gave our Consultant “no concerns” so we just carry on between 3 monthly PSA checks (now 0.05) and appointments and try not too think about “what ifs” in between. Not always easy!

User
Posted 30 May 2018 at 08:48

Susie,

You can view my Chemo journney if you go to my profile page, but in general my treatment is carried out in bursts of 8no cycles. At the end of those cycles i have a scan to determine the success of the treatment and my PSA is monitored. The scans so far have shown a good reaction to the Chemo, but the PSA determines the length of the chemo holiday and when my treatment starts again.

So far i have undertaken 17 cycles and I am due to complete my 20th cycle in July. I have few side effects with Docetaxel , but we have decided that after 20 cycles we will move on to Abbi and see how we go with that, in the knowledge that we can always return to Docetaxel should we need to

 

Regards

 

Dave

 

Edited by member 30 May 2018 at 08:55  | Reason: Not specified

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"
User
Posted 02 Jun 2018 at 19:41

Hi Kev, thanks so much for the reply. I’ve often read your profile and I’ve visited your web site before. You are a true inspiration to us all. I believe I also heard you on the radio a few months ago. 

the work you have done for men with this rotten disease is amazing. Poor Mike can barely walk around the house without a sit down now and he has his 6th infusion next week. I know the drugs affect everyone differently but it gives us some hope for after the treatment. We have not heard anything about RT at the moment but we are expecting more detailed info after the second lot of scans at the end of the month.

anyway by now I guess you’ll be about to embark on your next challenge. Good luck, we’ll be thinking of you.

for us, the challenge is to find an alcoholic drink that tastes right so Mike can celebrate our 45th anniversary today! Ha ha, he’s determined to find one! 

Thanks again and best wishes, Susie x

User
Posted 03 Jun 2018 at 19:43
Hi Susie,

I’m a bit further down the line than Mike as in I finished Docetaxel 15 months ago. I will always be on HT but find that strength loss, fatigue and just about everything associated with chemotherapy and HT have improved remarkably. I’ve put some hard work in to achieve this but am pretty chuffed.

Chris and I went on our first holiday abroad for two years in April and had a great time. I hope you and Mike had a great 45th - ours is in August.

All the best

Dave

User
Posted 03 Jun 2018 at 20:29

Well that’s a really positive story to hear. I’m so pleased for you. It gives us real hope. We have been told Mike is ‘sensitive ‘ to the Docetaxel and I’ve worried at times it’s doing more harm than good. We just need to get through the last bit now.  It’s daunting but if there’s a chance we might make another holiday abroad it’s a great incentive. 

The anniversary was a very quiet affair this year but hey ho there’s always next year. Congratulations to you both, hope you have a lovely day in August.

susie x

User
Posted 02 Jul 2018 at 12:49

It’s poss neuropathy which is a side effect of Docetaxel. My husband’s oncologist asked if he was experiencing difficulties in walking or balancing after he mentioned that he felt a numbness in his foot and fingers. Did he mention numbness earlier in his treatment? My OH did and to be on the safe side his oncologist reduced the dosage by the fifth treatment. 

Hope that helps

 

User
Posted 04 Jul 2018 at 05:35

Hello Bluetrew, can u just tell your hubby is diagnosed with spine metastatic ( It means tumour compressed spinal cord ). 

User
Posted 18 Jul 2018 at 11:10

My husband saw the oncologist last week. His scans both showing improvement. So we are now going back to Urology in 3 months. Nst sure what to expect now. He is gradually getting a bit stronger and starting to feel more normal each day after the awful time he had on Docetaxel. It does seem to have done its job though. So the news seems to be as good as it could be with T3m1n1 gleason 8. Don’t quite know how to feel. Obviously happy just not sure how much!

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User
Posted 29 May 2018 at 19:23
Suzie.

I finished my 1st 6 cycles of Docetaxel in Sept 17. I then, other than regular hormone injections had a 6 month treatment holiday.

Unfortunately however my PSA started to rise again in Feb 18 so I’m now on another 6 chemo infusions,(Cabazitaxel) with No 5 of 6 due tmos. Fortunately although my PSA is still high at 626, ( it was 1547 on diagnosis in Jan 17, with extensive bone mets, ) I’m lucky In that at the moment I’m tolerating chemo very well and am still playing golf, gardening, walking the dog etc. And have no dibillitating pain. In fact the main side effect in my case with both Docetaxel and Cabazitaxel is tiredness in the afternoon which at one stage I fought against whereas now I go with the flow and if I need a nap I just have one.

I too felt a bit lost after completing my initial 6 chemo infusions as the hospital/staff where I have had all my treatment were/are brilliant, but I found strength in both this and local forums. Also after you finish chemo you should have regular checkups and appointments with your Onco. If not ask why?

Hope it all works out for you

J.

User
Posted 29 May 2018 at 19:41

My husband finished his 6 cycles of docetaxel last September. At the end of treatment he was very breathless and easily fatigued. A worrying time. We were lucky that we were able to go on holiday for 3 weeks in November to somewhere warm to relax. Since our return he has regained his strength. We swim,  walk miles and garden and try to keep as fit as possible. The last scan gave our Consultant “no concerns” so we just carry on between 3 monthly PSA checks (now 0.05) and appointments and try not too think about “what ifs” in between. Not always easy!

User
Posted 30 May 2018 at 08:48

Susie,

You can view my Chemo journney if you go to my profile page, but in general my treatment is carried out in bursts of 8no cycles. At the end of those cycles i have a scan to determine the success of the treatment and my PSA is monitored. The scans so far have shown a good reaction to the Chemo, but the PSA determines the length of the chemo holiday and when my treatment starts again.

So far i have undertaken 17 cycles and I am due to complete my 20th cycle in July. I have few side effects with Docetaxel , but we have decided that after 20 cycles we will move on to Abbi and see how we go with that, in the knowledge that we can always return to Docetaxel should we need to

 

Regards

 

Dave

 

Edited by member 30 May 2018 at 08:55  | Reason: Not specified

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"
User
Posted 30 May 2018 at 11:33

Hi Susie, what I write here is my experience  after chemo.

chemo worked for me, PSA dropped and I got through it with a bit of nausea, taste buds shot, a couple of a&e visits and some tiredness/sadness however I countered that by running all through and didtwo marathons on weeks 13 and 15 of chemo.

what came next was a bit of being in limbo, they gave me 6 doses of rt to the prostate, at the time rare but now more common if you have spread, and then there was this void. You see after 7 months near constant treatment/tests they did not want to see me for 3 months. Whilst that was great I did feel sort of abandoned. I know there was nothing to say/do but it left me a bit dazed mentally as I was so used to a weekly conversation about how I was doing. So be prepared for hubby potentially feeling a bit lost. 

At the Time there was a McMillan advert on tv with a man walking around in the snow wearing a hospital gown, lost, that is exactly how I felt. In the advert a McMillan nurse found him, in my life my wife was always there and I did what I loved and carried on running, between the two my life just got better and now 3 years after chemo/rt ended I still run, a bit slower but much much further than before.

to me my life has been better and with more meaning since I was diagnosed, don’t get me wrong, I wish I never had it but the opportunity to enjoy life, make the best memories for me, family and friends and finally do so much fund raising and good for others by being a regular volunteer for PCUK have given my life more purpose. I try to be a force for good (I am still no saint by the way!).

in 10days time , over 100 colleagues will be walking a marathon each for Pcuk, I am doing all 7 with them.They hav eorganised this themselves because of me and will raise around £50k. It is very humbling to me but also gives me even more of that meaning I talk about and gives me energy to combat the tiredness that I could easily give in to.

so I have tried to answer your concern with what I know first hand, there will be low Points but f your hubby is able to fill his life with purpose, whatever that is for him then the bad thoughts go away.

i have now been on abiraterone for 28 months, I know it won’t last for ever maybe not much longer but my PSA was the lowest ever this month at 0.08 so don’t give up, make the most of it.  I have a personal website www.makethemostofit.org  if you want to see what I have been up to these last three years and how I deal mentally with th bad stuff.

take care

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 02 Jun 2018 at 19:18

Thankyou so much for taking the time to reply, Valleyboy. It’s true, a lot of support I’ve had through this process of helping my husband has come from the forum. People are so generous when they share their experiences and stories. My husband isn’t feeling great at the moment but we are hopeful that after the last infusion next week it will be all to play for! 

Good luck in your own journey. Susie

Edited by member 02 Jun 2018 at 19:18  | Reason: Not specified

User
Posted 02 Jun 2018 at 19:23
Hi Suelor, thanks for the reply. Your reply gave us a lot of hope. To think we could be doing the same again sounds like heaven. my husband sounds very similar as he comes towards the end of his treatment. Hope we follow in your footsteps.

Susie xx

User
Posted 02 Jun 2018 at 19:27

Hello Dave,

i have often looked at your profile and followed your journey. I am truly in awe of your determination and amazing positivit. Six cycles has really taken its toll on Mike.  I’m sure it affects everyone differently but you are a complete hero. Keep going, good luck with Abbi and I’ll carry on foll your epic journey. Susie x

User
Posted 02 Jun 2018 at 19:41

Hi Kev, thanks so much for the reply. I’ve often read your profile and I’ve visited your web site before. You are a true inspiration to us all. I believe I also heard you on the radio a few months ago. 

the work you have done for men with this rotten disease is amazing. Poor Mike can barely walk around the house without a sit down now and he has his 6th infusion next week. I know the drugs affect everyone differently but it gives us some hope for after the treatment. We have not heard anything about RT at the moment but we are expecting more detailed info after the second lot of scans at the end of the month.

anyway by now I guess you’ll be about to embark on your next challenge. Good luck, we’ll be thinking of you.

for us, the challenge is to find an alcoholic drink that tastes right so Mike can celebrate our 45th anniversary today! Ha ha, he’s determined to find one! 

Thanks again and best wishes, Susie x

User
Posted 03 Jun 2018 at 19:43
Hi Susie,

I’m a bit further down the line than Mike as in I finished Docetaxel 15 months ago. I will always be on HT but find that strength loss, fatigue and just about everything associated with chemotherapy and HT have improved remarkably. I’ve put some hard work in to achieve this but am pretty chuffed.

Chris and I went on our first holiday abroad for two years in April and had a great time. I hope you and Mike had a great 45th - ours is in August.

All the best

Dave

User
Posted 03 Jun 2018 at 20:29

Well that’s a really positive story to hear. I’m so pleased for you. It gives us real hope. We have been told Mike is ‘sensitive ‘ to the Docetaxel and I’ve worried at times it’s doing more harm than good. We just need to get through the last bit now.  It’s daunting but if there’s a chance we might make another holiday abroad it’s a great incentive. 

The anniversary was a very quiet affair this year but hey ho there’s always next year. Congratulations to you both, hope you have a lovely day in August.

susie x

User
Posted 02 Jul 2018 at 10:51
Hi everyone, following on from my original post I’m now asking a more specific question. Hoping someone can shed some light on this.

My husband had his last ,6th, Docetaxel a month ago. He is really struggling with stiffness in his legs and pain. He is wobbly when he walks and often describes a feeling of his legs giving way.

Has anyone any experience of this or anything like it? It’s really holding him back from doing things. He’s really worried it’s some permanent damage. I know it’s early days but he is desperate to see some signs of improvement.

Would be grateful for any views on this. Thanks

User
Posted 02 Jul 2018 at 11:57

Hello Susiew

Yes My Father Have Same isuue stifness in his leg and pain it is normal there is no need to worry my father's oncologist told me that .Spine pain is shifted to leg . Pls ask your oncologist or may be its chemo side effect.

Edited by member 02 Jul 2018 at 11:59  | Reason: Not specified

User
Posted 02 Jul 2018 at 12:49

It’s poss neuropathy which is a side effect of Docetaxel. My husband’s oncologist asked if he was experiencing difficulties in walking or balancing after he mentioned that he felt a numbness in his foot and fingers. Did he mention numbness earlier in his treatment? My OH did and to be on the safe side his oncologist reduced the dosage by the fifth treatment. 

Hope that helps

 

User
Posted 04 Jul 2018 at 05:00

Hello Dave, My Father is diagnosed with advance prostate cancer with spinal cord compression Due to spinal cord compression He was in lot of pain in tail bone but after chemo and hormone therapy My Father done with 4 sessions of chemo pain is shifted to leg can u tell me its chemo sideffect 

User
Posted 04 Jul 2018 at 05:35

Hello Bluetrew, can u just tell your hubby is diagnosed with spine metastatic ( It means tumour compressed spinal cord ). 

User
Posted 04 Jul 2018 at 17:52

Definitely no issue with spinal compression, he does not have bone mets but neuropathy is a common side effect of chemotherapy hence the toxicity questions asked by the nurse every single Docetaxel treatment I e asking regarding symptoms of nausea, mouth  sores , fatigue and most importantly, numbness in fingers or toes.

neuropathy is a very serious side effect, unfortunately it doesn’t improve after treatment but if it’s reported to the oncologist then he/she can consider reduction of dosage. My husband’s oncologist told him about another patient who was unable to balance and therefore walk due to neuropathy, so it’s vital to mention it.

Edited by member 04 Jul 2018 at 17:54  | Reason: Not specified

User
Posted 18 Jul 2018 at 11:10

My husband saw the oncologist last week. His scans both showing improvement. So we are now going back to Urology in 3 months. Nst sure what to expect now. He is gradually getting a bit stronger and starting to feel more normal each day after the awful time he had on Docetaxel. It does seem to have done its job though. So the news seems to be as good as it could be with T3m1n1 gleason 8. Don’t quite know how to feel. Obviously happy just not sure how much!

User
Posted 18 Jul 2018 at 12:42

Promising news, my husband has completed six cycles out of a possible ten . But he feels that he’s had enough! 

 
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