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Finally chemo for us

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User
Posted 26 Feb 2018 at 21:57
Hi everyone

Well after more than seven years of dodging and diving and using retro hormone treatments successfully, it’s time to face the music and join the rest of the met guys on the chemo trail. After finishing Radium 223 on a disappointing PSA of 77 and following bone scan and CT scan showing disappointing results showing further spread in the pelvis and abdominal lymph nodes, and noting the rather unwell state of my poorly husband, today’s oncology visit resulted in a decision to try a low dose of Docetaxel. 6 sessions are planned, starting in March. Low dose as John isn’t that well at the moment and has a high infection risk due to his SPC. It was decided that the so called new HTs were not indicated due to the seven years on HT so far probably meaning that they wouldn’t work, although a run of chemo might well change that situation.

We are ok about the prospect of chemo, having seen many men go through this over the years I have been a member of this forum we are not afraid. Not thrilled exactly of course, but seven years for a man with a Gleason score of ten dodging this bullet has been a great result so far, so no complaints. We knew this was a likely outcome, we knew from pain and general feelings of illness that the cancer was on the move and actually, it could have been worse.

I’ll let you know how we get on. I’m rather grateful the doctor is holding things up for an extra week or so to allow me to attend a retreat I’ve booked in Portugal during March for rest and recuperation after a horrible winter. She felt it would make no difference to the outcome for John but a huge difference to the outcome for me, I think she is right!

Love to everyone

Devonmaid xxxx

User
Posted 27 Feb 2018 at 09:59

Enjoy your break Devonmaid,

I'm just about to start Chemo infusion No 15 with Mr Docetaxel

In my case it really is not bad at all and more importantly it works for me as I am sure it will for your husband.

My very best wishes to you both

Dave

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"
User
Posted 26 Feb 2018 at 23:18

Oh Allison our paths once again on similar trajectories with me a year behind. My current treatment may start to work better but if not i’ll be with you on the now ‘old fashioned’ protocol of late chemo. I do hope this works for John and he tolerates it well. We both know this journey is rocky, uncertain and up and down but I am with you both all the way, I do hope it affords some respite to enjoy grandparent duties. So many best wishes Allison and John.

User
Posted 26 Feb 2018 at 21:57
Hi everyone

Well after more than seven years of dodging and diving and using retro hormone treatments successfully, it’s time to face the music and join the rest of the met guys on the chemo trail. After finishing Radium 223 on a disappointing PSA of 77 and following bone scan and CT scan showing disappointing results showing further spread in the pelvis and abdominal lymph nodes, and noting the rather unwell state of my poorly husband, today’s oncology visit resulted in a decision to try a low dose of Docetaxel. 6 sessions are planned, starting in March. Low dose as John isn’t that well at the moment and has a high infection risk due to his SPC. It was decided that the so called new HTs were not indicated due to the seven years on HT so far probably meaning that they wouldn’t work, although a run of chemo might well change that situation.

We are ok about the prospect of chemo, having seen many men go through this over the years I have been a member of this forum we are not afraid. Not thrilled exactly of course, but seven years for a man with a Gleason score of ten dodging this bullet has been a great result so far, so no complaints. We knew this was a likely outcome, we knew from pain and general feelings of illness that the cancer was on the move and actually, it could have been worse.

I’ll let you know how we get on. I’m rather grateful the doctor is holding things up for an extra week or so to allow me to attend a retreat I’ve booked in Portugal during March for rest and recuperation after a horrible winter. She felt it would make no difference to the outcome for John but a huge difference to the outcome for me, I think she is right!

Love to everyone

Devonmaid xxxx

User
Posted 26 Feb 2018 at 23:02

Oh love, new pelvic and lymph activity is not what you hoped for - so sorry that Radium 223 wasn’t more amazing. But John has had another birthday that you might not have dared hope for, he looks well even if he doesn’t feel it, Dakota loves being with her grumpy and you have a much deserved retreat before facing your next challenge together.

If anyone deserves that R&R, it is you xxx

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

User
Posted 27 Feb 2018 at 07:04

My thoughts are with you both. I’ve followed your story and it’s ups and downs since I joined. Enjoy Portugal.

User
Posted 27 Feb 2018 at 07:28
Hi Allison.

After being DX in 2015 and undergoing surgery, RT and HT I too am on the Chemo path now. This was due to last bone scan in Dec showing mets in pelvic area (sacrum).

Had 2 sessions so far and only side effect is hair loss so I shaved my head with a No2 razor but it is steadily going. It's a path that I didn't even consider in Dec before scan as I feel fine, but who knows what lies inside.

Anyway i took had booked a wee trip away to Tenerife before chemo and was also told the extra week would make no difference to the growth. During the day on holiday was fine, enjoying the weather but night time was subdued due to thoughts returning to getting back home.

Was told that there is more treatments out there so I hope it is the same for you. Stay strong and you'll get through it. My biggest concern at present is if I'll be here long enough to See grandkids.

Enjoy the break as you need it.

User
Posted 27 Feb 2018 at 08:33

Have a restful and rejuvenating retreat.

I wish your husband all the best for his chemo journey

We can't control the winds - but we can adjust our sails
User
Posted 27 Feb 2018 at 08:38
Enjoy the retreat in Portugal, you deserve it. My thoughts are with you both. Here’s hoping the chemo goes as well as it can.

Ian.

Ido4

User
Posted 09 Apr 2018 at 23:09

So disappointed for you - how on earth did they forget to tell you? Fingers, toes and everything else crossed that the next chemo goes okay - summer is coming and hopefully John will be able to make the most of sunshine and warmth xxx

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

User
Posted 09 Apr 2018 at 23:46

Thanks for sharing A. I am thinking of you both as you progress through this treatment. Hope JOHN can tolerate each chemo infusion. Thinking of you both.

User
Posted 10 Apr 2018 at 06:09

Thinking of you both and best wishes for the treatment.

User
Posted 10 Apr 2018 at 06:43

Hi Allison,

Wishing both of you all the best,

Barry

User
Posted 10 Apr 2018 at 08:08
Best wishes to you and john

Hope it all goes well

Don't deny the diagnosis; try to defy the verdict
User
Posted 10 Apr 2018 at 08:28
Thinking of you both. I hope treatment goes well.

Ian

Ido4

User
Posted 10 Apr 2018 at 08:44

Thinking of you both Devonmaid and hoping that the rest of the chemo can be tolerated

Best Wishes

Sandra

We can't control the winds - but we can adjust our sails
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User
Posted 26 Feb 2018 at 23:02

Oh love, new pelvic and lymph activity is not what you hoped for - so sorry that Radium 223 wasn’t more amazing. But John has had another birthday that you might not have dared hope for, he looks well even if he doesn’t feel it, Dakota loves being with her grumpy and you have a much deserved retreat before facing your next challenge together.

If anyone deserves that R&R, it is you xxx

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

User
Posted 26 Feb 2018 at 23:18

Oh Allison our paths once again on similar trajectories with me a year behind. My current treatment may start to work better but if not i’ll be with you on the now ‘old fashioned’ protocol of late chemo. I do hope this works for John and he tolerates it well. We both know this journey is rocky, uncertain and up and down but I am with you both all the way, I do hope it affords some respite to enjoy grandparent duties. So many best wishes Allison and John.

User
Posted 27 Feb 2018 at 07:04

My thoughts are with you both. I’ve followed your story and it’s ups and downs since I joined. Enjoy Portugal.

User
Posted 27 Feb 2018 at 07:28
Hi Allison.

After being DX in 2015 and undergoing surgery, RT and HT I too am on the Chemo path now. This was due to last bone scan in Dec showing mets in pelvic area (sacrum).

Had 2 sessions so far and only side effect is hair loss so I shaved my head with a No2 razor but it is steadily going. It's a path that I didn't even consider in Dec before scan as I feel fine, but who knows what lies inside.

Anyway i took had booked a wee trip away to Tenerife before chemo and was also told the extra week would make no difference to the growth. During the day on holiday was fine, enjoying the weather but night time was subdued due to thoughts returning to getting back home.

Was told that there is more treatments out there so I hope it is the same for you. Stay strong and you'll get through it. My biggest concern at present is if I'll be here long enough to See grandkids.

Enjoy the break as you need it.

User
Posted 27 Feb 2018 at 08:33

Have a restful and rejuvenating retreat.

I wish your husband all the best for his chemo journey

We can't control the winds - but we can adjust our sails
User
Posted 27 Feb 2018 at 08:38
Enjoy the retreat in Portugal, you deserve it. My thoughts are with you both. Here’s hoping the chemo goes as well as it can.

Ian.

Ido4

User
Posted 27 Feb 2018 at 09:59

Enjoy your break Devonmaid,

I'm just about to start Chemo infusion No 15 with Mr Docetaxel

In my case it really is not bad at all and more importantly it works for me as I am sure it will for your husband.

My very best wishes to you both

Dave

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"
User
Posted 27 Feb 2018 at 21:25

DM

Hope the chemo goes as well as you hope it will. Enjoy your break. Although my SPC is changed every 12 weeks or so I have noticed that it gets uncomfortable at around 8-9 weeks and wondered if it should be changed earlier, does John have the similar issues. Take care of yourself.

Thanks Chris

User
Posted 27 Feb 2018 at 21:43

Just sending my best wishes. Enjoy your break and hope Chemo goes well.

User
Posted 27 Feb 2018 at 22:58
Hope chemo is as good and straight forward for you as it was for me, enjoy the retreat

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 28 Feb 2018 at 16:31

Thinking of you very much. Best wishes.

David

User
Posted 28 Feb 2018 at 20:35
Hello to you and your husband. My dad has just started chemo I guess this would be called late chemo too. He’s had one session so far and his main symptoms have been tiredness and a funny taste in the mouth. He has had a week in hospital though recently so he’s still tired from that. I’ll keep my page updated with how his chemo is going and any tips I gather along the way. Love and best wishes to you both and I hope you enjoy the retreat. PenP xxx
User
Posted 01 Mar 2018 at 07:18

Sending love and best wishes ,enjoy your break
Debby

User
Posted 09 Apr 2018 at 19:52
Hi everyone,

Well chemo no 1 has passed more or less without problem so far, however our oncology visit today brought out the fact that John has tumours on T2 and T4, which we weren’t aware of, and we should be alert to any shoulder pain for SCC. That was a bit of a shock I must admit. Chemo 2 (of 10 not 6 as previously mentioned) will take place next week, remaining at the lower 75% dose for the time being. Though not ideal, the oncologist doesn’t feel that John is up to the full dose yet. We as always, take the advice given and carry on regardless. Life hasn’t been too bad, I would say definitely more pain during chemo than before but manageable. PSA has gone up again prior to chemo and we have been told to expect further rises, I guess we know now what those PSA rises meant while we were having Radium 223 and the doctors were all saying not to worry though! I do wish that medics would remember that not everyone has massive PSA results, John’s started at 25 and only rose now after seven years to 81. It had already spread to bones and lymph at 25. I think the doctors expect that men should have big numbers to mean further spread and weren’t bothered when John’s went up from 9 at the start of Radium 223 to 77 at the end five months later. Constantly telling us that it was due to inflammation and not to worry, in the meantime the cancer was spreading further into the skeleton and the lymph nodes. Just a warning to others really. I don’t suppose it would have helped to know earlier in the scheme of things, I doubt it would make much difference to the current treatment regime.

Ah well, seven years, G10 and counting. Life isn’t so bad!

Lots of love

Devonmaid xxx

Edited by member 09 Apr 2018 at 23:29  | Reason: Not specified

User
Posted 09 Apr 2018 at 23:09

So disappointed for you - how on earth did they forget to tell you? Fingers, toes and everything else crossed that the next chemo goes okay - summer is coming and hopefully John will be able to make the most of sunshine and warmth xxx

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

User
Posted 09 Apr 2018 at 23:46

Thanks for sharing A. I am thinking of you both as you progress through this treatment. Hope JOHN can tolerate each chemo infusion. Thinking of you both.

User
Posted 10 Apr 2018 at 06:09

Thinking of you both and best wishes for the treatment.

User
Posted 10 Apr 2018 at 06:43

Hi Allison,

Wishing both of you all the best,

Barry

User
Posted 10 Apr 2018 at 08:08
Best wishes to you and john

Hope it all goes well

Don't deny the diagnosis; try to defy the verdict
User
Posted 10 Apr 2018 at 08:28
Thinking of you both. I hope treatment goes well.

Ian

Ido4

User
Posted 10 Apr 2018 at 08:44

Thinking of you both Devonmaid and hoping that the rest of the chemo can be tolerated

Best Wishes

Sandra

We can't control the winds - but we can adjust our sails
User
Posted 06 May 2018 at 14:29
Hi everyone

Just an update. John was admitted to hospital on Friday with a temp of 38.8, probably pneumonia though we are still not sure. He has a horrendous cough and is quite poorly, next chemo is postponed (due Wednesday) of course. He is neutropenic. We managed two chemos with one infection (UTI treated at home) and now this. I knew chemo would be difficult for us due to the supra pubic catheter and the infection risk and so it has proved.

I’ll let you know how things go.

Devonmaid

User
Posted 06 May 2018 at 20:01
I am sorry to read that there is a hiccup in the plan. I hope all gets sorted and you can get back on the chemo path soon. Thinking of you both.

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 06 May 2018 at 21:43

Thinking of you both Devonmaid - I hope John is home soon and the next cycle goes ahead as planned xxx

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

User
Posted 06 May 2018 at 22:19
DM

Sorry to hear things are not going well, hopefully he will get back on track with his treatment.

Thanks Chris

User
Posted 07 May 2018 at 19:31

What a blow A. I do hope he can fight off infection and get the most from chemo. It’s a tough regime. Any signs of impact from first two rounds (apart from the problems!). Thinking of you both.

User
Posted 07 May 2018 at 21:58

Thinking of both of you and hoping the chemo can start again soon

Bri xx

User
Posted 07 May 2018 at 22:09
Hi all

Thanks for your kind words, tests have now revealed that this is definitely flu (Aussie flu they think). So far the impact on PSA from the two chemos have been start 81, first chemo 42, then next test 67 but pain now under control so I think even at 75% it was doing something. It will be postponed and the oncology team will decide what to do after seeing him tomorrow and discussing the situation. Really, I’ve been very concerned about infections because of the SPC essentially, people with SPCs are assumed to always have an infection and this has often been the case for John. With chemo that does make life much harder.

John has improved a lot since Friday with antibiotics and rehydration, yesterday was scary I must admit but today was better. He is still very shaky (known as rigor) apparently a common flu symptom, it’s hard to watch. But I no longer fear for his life, but whether it is worth carrying on with chemo, that’s another issue.

I’ll update when the oncology team tell us what they think is best.

Love

Devonmaid xxx

User
Posted 07 May 2018 at 22:30
How awful picking up flu.

Thinking of you both and sending best wishes, Ian,

Ido4

User
Posted 08 May 2018 at 13:42

Just to say sorry you are both going through this DM X

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