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Starting the Journey

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User
Posted 29 Aug 2017 at 09:09

Hi everyone,

I have been a member since May when I was first diagnosed. In brief, 60 year old, reasonably fit and healthy individual with Gleeson 5+4, PSA 54.7 biopsy 12/12. MRI, CT's and bone scans all done very quickly and PCa has escaped and is in the lymph nodes but is confined to the pelvic area.

I have spent many hours reading the posts surrounding all aspects of PCa but have not really felt in a position to contribute purely because my experience has been limited.

I started HT at the end of May and by the end of July my PSA was down to 1.9. I had awful mood swings in the first couple of months but these have eased, I still get quite tired but manage to keep exercising, try to do 30 mins of cycling/cross trainer/weights 4 times a week. The only thing that has stayed with me throughout so far has ben the flushes although mine don't appear to be as bad as some others who have posted.

Now I am about to start 6 cycles of Docetaxel Chemo (tomorrow)! Just started my Dexamethasone steroids in preparation. I have really appreciated all the information that has been posted and I feel pretty well prepared for what lies ahead. I will post my experiences as and when anything worth posting happens. I don't imagine they will be significantly different but my experience may help others in the way that I have been helped by those that have posted before. I honestly believe that being positive is half the battle and I can see that confirmed by others. Although staying positive is sometimes quite difficult. I won't bore you any more but will share my experience as it goes over the next few weeks.

User
Posted 29 Aug 2017 at 09:09

Hi everyone,

I have been a member since May when I was first diagnosed. In brief, 60 year old, reasonably fit and healthy individual with Gleeson 5+4, PSA 54.7 biopsy 12/12. MRI, CT's and bone scans all done very quickly and PCa has escaped and is in the lymph nodes but is confined to the pelvic area.

I have spent many hours reading the posts surrounding all aspects of PCa but have not really felt in a position to contribute purely because my experience has been limited.

I started HT at the end of May and by the end of July my PSA was down to 1.9. I had awful mood swings in the first couple of months but these have eased, I still get quite tired but manage to keep exercising, try to do 30 mins of cycling/cross trainer/weights 4 times a week. The only thing that has stayed with me throughout so far has ben the flushes although mine don't appear to be as bad as some others who have posted.

Now I am about to start 6 cycles of Docetaxel Chemo (tomorrow)! Just started my Dexamethasone steroids in preparation. I have really appreciated all the information that has been posted and I feel pretty well prepared for what lies ahead. I will post my experiences as and when anything worth posting happens. I don't imagine they will be significantly different but my experience may help others in the way that I have been helped by those that have posted before. I honestly believe that being positive is half the battle and I can see that confirmed by others. Although staying positive is sometimes quite difficult. I won't bore you any more but will share my experience as it goes over the next few weeks.

User
Posted 04 Oct 2017 at 20:04

Well, I am getting toward the end of the three weeks following session 2. Next cycle of Chemo is next Monday. Been pretty good this time round, taste buds still went early on and mouth was sore but nowhere near as bad as last time! Still struggled with constipation but managed it more effectively with laxatives etc.

Not sure if it was the injection after the Chemo that helped but whatever it was, I hope it carries on like this. If the side effects are no worse then I will be fine, if they improve then even better.

Saw the Onco on Monday, he is determined to keep me on max dose Chemo and then hit it with max dose radiotherapy. Funny but he used the phrase and I quote " to kill the cancer". Now I thought that was not a reality when I started. However he did go on to add that HT would be a lifelong prospect, which, to be honest I can cope with. OK there are issues with ED and flushes but hell! I'd rather that than the alternative! I am lucky in lots of ways, my wife of 37 years feels pretty much the same way as me....time together is way more important than physical stuff. I am just determined to see my grandchildren grow up (currently twins, boy and girl aged 3 and a granddaughter aged 6). So bring on Chemo 3!

In the words of the song, "If you knock me over I WILL get back up again".

User
Posted 29 Aug 2017 at 10:43

Best wishes for your Chemo. My husband is due to have session 4 tomorrow.

User
Posted 29 Aug 2017 at 11:55

Thanks for the update Bigferg and good luck with the rest of the treatment

As for boring us - Never !

We are in this together. All information, no matter how small or apparently insignificant,is going to be of help to somebody else.

Best Wishes

Sandra

We can't control the winds - but we can adjust our sails
User
Posted 29 Aug 2017 at 12:43

Good luck Bigferg ,my OH had his chemo over a year ago and came off pretty unscathed .listen to your body and take care .
Best wishes
Debby

User
Posted 29 Aug 2017 at 13:13
Good luck with the chemo Bigferg, my hubby went down the same route last year. He's doing ok , had a small increase in PSA when last tested and is due another test next month so hoping it was just a blip. Take care - keep posting,

Debbie x

User
Posted 29 Aug 2017 at 18:58

Bigferg, a great, very encouraging result. Keep us in touch and stay positive. You have years of fulfilling g life ahead. Make plans for them!

AC

User
Posted 29 Aug 2017 at 19:57
Hi Ian

Hope it all went well today

I have had 9 cycles of docetaxel and currently had my 5th cycle of cabazataxel today all in all they was not to bad but everyone is different hope you get a easy ride

Si

Don't deny the diagnosis; try to defy the verdict
User
Posted 29 Aug 2017 at 19:57
Hi Bgferg, that's a good response on hormone therapy getting your PSA down, I hope the chemo goes as well as it can and that your PSA continues downwards. Thanks for the update, best wishes, Ian.

Ido4

User
Posted 29 Aug 2017 at 19:57
Hi Bgferg, that's a good response on hormone therapy getting your PSA down, I hope the chemo goes as well as it can and that your PSA continues downwards. Thanks for the update, best wishes, Ian.

Ido4

User
Posted 01 Sep 2017 at 14:39

I believe that taking frozen Pineapple sticks with you to munch on can help protect the taste buds.

My tag line was pinched from our daughter and grandson who use it to reflect their feelings following his inoperable cancer aged 13 and her life changing surgery at 38.

They both live their lives to the full. The saying is apt for our grandson as he took up sailing following his treatment and went on his first trip with the Ellen Macarthur Cancer Trust who lays on trips for children and young adults suffering from or recovering from cancer, and is now a fully qualified sailor and volunteers for their trust

Edited by member 01 Sep 2017 at 14:40  | Reason: Not specified

We can't control the winds - but we can adjust our sails
User
Posted 03 Sep 2017 at 18:55

I had read about the pineapple elsewhere but forgot to take any on the day. Won't forget in two weeks time!
Love the back story Johsan, can't think of a more apt tag line for you.

Now well into day 4 and have found I am getting real discomfort in some joints, primarily those where I have significant osteo arthritis, knees, and ankle. Other than that and the effects I described before, no real change although I am feeling better in general and slightly less tired. It seems as if the Prednisolone has an effect on me for about an hour or so after taking it, tired and generally out of sorts!

User
Posted 08 Sep 2017 at 20:42

Well, 9 days in and I find myself in the local cancer hospital after a raging temperature today! Not sure where it came from but it appears I have picked up an infection. My neutrophils are also down to 0.2! Hence the susceptibility to infection. Currently hooked up to some major antibiotics for the next 24 hrs or so! Really was NOT expecting this! Just hope it does not impact upon my ongoing Chemo or treatment! On the up side, my mouth is less sore but I am struggling with the loo! Despite being given some pretty heavy duty laxatives!! Oh joy!! Still, on the upside a room to myself and real peace and quiet!!!

User
Posted 08 Sep 2017 at 22:33
Hope your feeling well soon bigferg, and hope the rest of your treatment continues without any hurdles, i cant offer advice as still learning from you guys, everyone has such compassion and understanding, your all people who do things to help others like me, and ask nothing in return, this community forum has taught me that people realy are selfless in helping others giving hope and advice to help others on their own journey with reassurance and support at such a bad time in their life, I SALUTE EACH AND EVERY ONE OF YOU..you replied to my post last week my o.h similar diagnosis to you,1week into hormone pills, bone scan 5/9, first zoladex injection 20/9 will also get bone scan results then,. All i can offer you at this time is to wish you well and good luck for the rest of your treatment..and thank you again it means a lot...jo
User
Posted 09 Sep 2017 at 06:23

Feel better soon Bigferg

We can't control the winds - but we can adjust our sails
User
Posted 09 Sep 2017 at 09:34

My husband also ended up in hospital after his first Chemo with low neutrophils 0.3. Antibiotics but no infection found. Told just one of those things. His Chemo dose has since been reduced and he's got through 2,3 & 4 without having to go into hospital. So just 5 & 6 to go. Hope you improve quickly and home soon.

User
Posted 11 Sep 2017 at 14:11

Well Bigferg, at least something positive came out of it and you won't be a big strong lad next time and try and work through it !!

As for the song, learn from it !!!!!! (only be careful how you get back up again haha - nothing too strenous!)

We can't control the winds - but we can adjust our sails
User
Posted 13 Sep 2017 at 15:56

Finally escaped the hospital. Managed to keep Temp down for 24 hrs and see my neutrophils improve sufficiently well to allow me home yesterday evening. See the onco tomorrow, after talking to the Docs in the hospital, got a feeling the next cycle may be delayed and likely dosage reduced but will find out more tomorrow.

14.9

Saw the Onco today, he was as surprised as me about the effect of the Chemo. Neutrophils have recovered to 3.5 and he is happy for Chemo to continue as scheduled. He has also prescribed something to help boost white cells after the Chemo. Not sure what it is called yet but will find out on Monday when cycle 2 is administered. 

Edited by member 14 Sep 2017 at 16:17  | Reason: Not specified

User
Posted 18 Sep 2017 at 18:19

Good luck this time Big ferg

We can't control the winds - but we can adjust our sails
User
Posted 18 Sep 2017 at 21:07

Best wishes for next treatment

Show Most Thanked Posts
User
Posted 29 Aug 2017 at 10:43

Best wishes for your Chemo. My husband is due to have session 4 tomorrow.

User
Posted 29 Aug 2017 at 11:55

Thanks for the update Bigferg and good luck with the rest of the treatment

As for boring us - Never !

We are in this together. All information, no matter how small or apparently insignificant,is going to be of help to somebody else.

Best Wishes

Sandra

We can't control the winds - but we can adjust our sails
User
Posted 29 Aug 2017 at 12:43

Good luck Bigferg ,my OH had his chemo over a year ago and came off pretty unscathed .listen to your body and take care .
Best wishes
Debby

User
Posted 29 Aug 2017 at 13:13
Good luck with the chemo Bigferg, my hubby went down the same route last year. He's doing ok , had a small increase in PSA when last tested and is due another test next month so hoping it was just a blip. Take care - keep posting,

Debbie x

User
Posted 29 Aug 2017 at 18:58

Bigferg, a great, very encouraging result. Keep us in touch and stay positive. You have years of fulfilling g life ahead. Make plans for them!

AC

User
Posted 29 Aug 2017 at 19:57
Hi Ian

Hope it all went well today

I have had 9 cycles of docetaxel and currently had my 5th cycle of cabazataxel today all in all they was not to bad but everyone is different hope you get a easy ride

Si

Don't deny the diagnosis; try to defy the verdict
User
Posted 29 Aug 2017 at 19:57
Hi Bgferg, that's a good response on hormone therapy getting your PSA down, I hope the chemo goes as well as it can and that your PSA continues downwards. Thanks for the update, best wishes, Ian.

Ido4

User
Posted 29 Aug 2017 at 19:57
Hi Bgferg, that's a good response on hormone therapy getting your PSA down, I hope the chemo goes as well as it can and that your PSA continues downwards. Thanks for the update, best wishes, Ian.

Ido4

User
Posted 01 Sep 2017 at 12:07

Well, here I am day two post the first cycle. Now taking Prednisolone (5mg) twice a day. The Chemo went well, although I forgot to put pressure on the canula site when they removed it, despite all the advice from others on here, and ended up with a sore hand! Yesterday was pretty good. It's strange how you almost wait for side effects to start....I was given the whole list of potentials and told it is possible for all/any/none and I described this to my wife, Julie, as a bit like organising a party that is due to start at 7.30 pm. You just wait for the guests to arrive not quite sure who is turning up when!

Well, guest number 1 arrived in the form of a change in my taste buds, nothing drastic but a definite change, I can cope with that as long as it gets no worse. But then today..Guest number two....tiredness. Now some of it may be my fault, I did do a gentle workout for 45 mins this morning, then popped out with Julie to pick up some shopping but travelling back in the car I was falling asleep, just as well Julie was driving really! Got home and by the time a cuppa was ready I was spark out! I am really struggling with this as it is so not me! I know I am going to have to pace myself but I have always had difficulty in doing this and have always pushed myself.

Still, on the up side, if I have to sit still more often I can get to watch the Cricket and rugby over the next few weeks without beating myself up for not doing other "stuff"!

 

Just hoping that not too many other guests turn up from now on in but we will have to wait and see! 

Hope you are all keeping as well as can be! I've been searching for one of the lovely tag lines people use on their posts, not found the perfect one yet but for now:

Never fear the shadows, they simply mean there is a light shining somewhere nearby. Winnie the Pooh!

User
Posted 01 Sep 2017 at 14:39

I believe that taking frozen Pineapple sticks with you to munch on can help protect the taste buds.

My tag line was pinched from our daughter and grandson who use it to reflect their feelings following his inoperable cancer aged 13 and her life changing surgery at 38.

They both live their lives to the full. The saying is apt for our grandson as he took up sailing following his treatment and went on his first trip with the Ellen Macarthur Cancer Trust who lays on trips for children and young adults suffering from or recovering from cancer, and is now a fully qualified sailor and volunteers for their trust

Edited by member 01 Sep 2017 at 14:40  | Reason: Not specified

We can't control the winds - but we can adjust our sails
User
Posted 03 Sep 2017 at 18:55

I had read about the pineapple elsewhere but forgot to take any on the day. Won't forget in two weeks time!
Love the back story Johsan, can't think of a more apt tag line for you.

Now well into day 4 and have found I am getting real discomfort in some joints, primarily those where I have significant osteo arthritis, knees, and ankle. Other than that and the effects I described before, no real change although I am feeling better in general and slightly less tired. It seems as if the Prednisolone has an effect on me for about an hour or so after taking it, tired and generally out of sorts!

User
Posted 08 Sep 2017 at 20:42

Well, 9 days in and I find myself in the local cancer hospital after a raging temperature today! Not sure where it came from but it appears I have picked up an infection. My neutrophils are also down to 0.2! Hence the susceptibility to infection. Currently hooked up to some major antibiotics for the next 24 hrs or so! Really was NOT expecting this! Just hope it does not impact upon my ongoing Chemo or treatment! On the up side, my mouth is less sore but I am struggling with the loo! Despite being given some pretty heavy duty laxatives!! Oh joy!! Still, on the upside a room to myself and real peace and quiet!!!

User
Posted 08 Sep 2017 at 22:33
Hope your feeling well soon bigferg, and hope the rest of your treatment continues without any hurdles, i cant offer advice as still learning from you guys, everyone has such compassion and understanding, your all people who do things to help others like me, and ask nothing in return, this community forum has taught me that people realy are selfless in helping others giving hope and advice to help others on their own journey with reassurance and support at such a bad time in their life, I SALUTE EACH AND EVERY ONE OF YOU..you replied to my post last week my o.h similar diagnosis to you,1week into hormone pills, bone scan 5/9, first zoladex injection 20/9 will also get bone scan results then,. All i can offer you at this time is to wish you well and good luck for the rest of your treatment..and thank you again it means a lot...jo
User
Posted 09 Sep 2017 at 06:23

Feel better soon Bigferg

We can't control the winds - but we can adjust our sails
User
Posted 09 Sep 2017 at 08:44
I hope the antibiotics work quickly and you're feeling better soon.

Ido4

User
Posted 09 Sep 2017 at 09:34

My husband also ended up in hospital after his first Chemo with low neutrophils 0.3. Antibiotics but no infection found. Told just one of those things. His Chemo dose has since been reduced and he's got through 2,3 & 4 without having to go into hospital. So just 5 & 6 to go. Hope you improve quickly and home soon.

User
Posted 11 Sep 2017 at 11:04

Well, what an interesting weekend that was. Still in Hospital, temp now under control and stable. Neutrophils still very low (0.2) but have now been taken off IV antibiotics and put on tablets. As long as my Temp does not spike again and my Neutrophil count increases then I may get to go home either today or tomorrow.

It has been a weekend of discovery and I have learned SO much about the treatment and effects and have the most amazing support from the team. The one thing I have learned is that this is NOTHING like anything I have experienced before and I can't behave as I have in the past when I felt a bit under the weather. Just carrying on and pushing through is not a smart option. I HAVE to listen to my body.

It has taken this to really make me realise and I hope that anyone who reads this, and is just embarking on a similar route, or has someone that is, will take notice too. Got a feeling my next cycle may be delayed by a week to give me time to fully recover. Still, onwards and upwards.

On a lighter note, my granddaughter loves the film Trolls and there is a song in there with words that fit my feelings: This is the Chorus from Get Back Up Again:

Hey!
I'm not giving up today
There's nothing getting in my way
And if you knock knock me over
I will get back up again
If something goes a little wrong
Well you can go ahead and bring it on
'Cause if you knock knock me over, I will get back up again.

Think I've found my tagline!

User
Posted 11 Sep 2017 at 14:11

Well Bigferg, at least something positive came out of it and you won't be a big strong lad next time and try and work through it !!

As for the song, learn from it !!!!!! (only be careful how you get back up again haha - nothing too strenous!)

We can't control the winds - but we can adjust our sails
User
Posted 13 Sep 2017 at 15:56

Finally escaped the hospital. Managed to keep Temp down for 24 hrs and see my neutrophils improve sufficiently well to allow me home yesterday evening. See the onco tomorrow, after talking to the Docs in the hospital, got a feeling the next cycle may be delayed and likely dosage reduced but will find out more tomorrow.

14.9

Saw the Onco today, he was as surprised as me about the effect of the Chemo. Neutrophils have recovered to 3.5 and he is happy for Chemo to continue as scheduled. He has also prescribed something to help boost white cells after the Chemo. Not sure what it is called yet but will find out on Monday when cycle 2 is administered. 

Edited by member 14 Sep 2017 at 16:17  | Reason: Not specified

User
Posted 18 Sep 2017 at 16:17

Second Chemo session today, hope the pineapple works really don't want he taste buds to go the way they did last time. Mind you if that is the only thing this time I'll settle for that I suppose. Been prescribed Pefilgrastim injections to support the white cell production, nurse doing the first one tomorrow then it will be down to me after each Chemo.

Found that I am losing my hair quite quickly over the last couple of days, it's very short anyway, so to avoid hairy pillows it's time for the rest to go.

User
Posted 18 Sep 2017 at 18:19

Good luck this time Big ferg

We can't control the winds - but we can adjust our sails
User
Posted 18 Sep 2017 at 21:07

Best wishes for next treatment

User
Posted 04 Oct 2017 at 20:04

Well, I am getting toward the end of the three weeks following session 2. Next cycle of Chemo is next Monday. Been pretty good this time round, taste buds still went early on and mouth was sore but nowhere near as bad as last time! Still struggled with constipation but managed it more effectively with laxatives etc.

Not sure if it was the injection after the Chemo that helped but whatever it was, I hope it carries on like this. If the side effects are no worse then I will be fine, if they improve then even better.

Saw the Onco on Monday, he is determined to keep me on max dose Chemo and then hit it with max dose radiotherapy. Funny but he used the phrase and I quote " to kill the cancer". Now I thought that was not a reality when I started. However he did go on to add that HT would be a lifelong prospect, which, to be honest I can cope with. OK there are issues with ED and flushes but hell! I'd rather that than the alternative! I am lucky in lots of ways, my wife of 37 years feels pretty much the same way as me....time together is way more important than physical stuff. I am just determined to see my grandchildren grow up (currently twins, boy and girl aged 3 and a granddaughter aged 6). So bring on Chemo 3!

In the words of the song, "If you knock me over I WILL get back up again".

 
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