Just completed 9 months on Abiraterone. A very smooth ride indeed.
My PSA has started to rise once again so Enzalutamide is next on the menu.
My best wishes to Tony and may his "palliative care" last for many years
Regards
Dave
"Incurable cancer does not mean it is untreatable and does not mean it is terminal either" |
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I have now been on abiraterone for almost three and a half years , no side effects I can tell and PSA has been steady at 0.14 for over 6 months.
still running ultramarathons and have finished day two of a three day charity trek for PCUK at over 30 miles a day so it can last a long time as I am currently still living testimony.
Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019 |
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Good luck to you both and may palliative days be long lasting.
Ray
User
Tony saw his consultant today and his psa has gone down to either 0.2 or 0.02, I was so shocked and pleased at how low it had gone I cant actually remember, so will wait for copy of the hospital letter to arrive but either way I don't mind and over the moon really. Oh and his kidney function has stayed at 8% so the RT has not done any more damage to them and he still has a bit of a reprieve from going on dialysis. xxx
onwards and upwards
barbara x
Edited by member 26 Feb 2020 at 17:47
| Reason: Not specified
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The NHS is a minefield of incompetence and lack of ownership of patient outcomes. Had to instruct my mother's GP today on how to effectively manage a difficult infection, his defense was he hadn't seen her before, actually had had 2 weeks previously just hadn't bothered recording the consultation or its outcome.
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Hi
Thought I would start a new thread now Tony has started abiraterone, started last week and so far no side effects, he has been told to check his blood pressure once a week as it can make it high but so far ok. Tony received a copy of the letter from the cancer/Macmillan nurse who is in charge of his medication and it said he is now on palliative care, hopefully this will be for many more years.
regards Barbara x
User
Good luck and may it work for ages x
If life gives you lemons , then make lemonade |
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Hope the Abiraterone does the job for a long time.
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Good luck
John was put on Enzalutimide in January but I’m thinking it has now failed due to a big increase in pain this last week or so, from the main tumour site. We have an oncology appointment on Monday so will discuss with them. We were told to take BP twice a day on Enzalutimide due to the danger of malignant BP. It’s become routine, it’s surprising how different it can be from one day to the next but so far it’s been mostly ok except for when he had sepsis.
Fingers crossed Tony does well, our men are pretty amazing aren’t they?
love Devonmaid xxx
User
Hi Devonmaid
Thankyou and yes they are pretty amazing, we have to take Tony's BP once a week and so far it has been ok, I hope John gets on ok on Monday and the Enzalutimide has not failed so fingers crossed for John.
barbara xx
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Hi
Tony has been on abiraterone now for 4 weeks, his PSA has dropped to 1.2 and his scan on Monday came back as stable, he has had no side effects at all apart from his energy seems to be returning, so far so good.
Barbara.
User
I was on aberaterone for about a year until it stopped working,but had no side effects at all.
Palliative seems to be used for different things in different places,but basically refers to a treatment which will slow the progress of a disease,and often stop it in it's tracks,but is not a " cure "
Health workers often seem oblivious to the sensitivity patients feel when such words are used.
Hope you have many more years together.
Edited by member 11 Jul 2019 at 20:41
| Reason: Not specified
"Terminal " does NOT mean imminent!! |
User
Great news and long may it last
love Devonmaid xxxx
User
Hi Barbara,
I understand your concerns and yes you do have to be very motivated to do PD correctly and safely, I am a lot younger and wanted to stay in work. It is what works best for you, and what you feel you can sustain long term.
Just another point though about Haemo. I started at GFR 7 but only had to do two sessions a week, and because I still passed enough urine (I got some strange looks from fellow patients as I was the only one asking for a bottle halfway through!), never had to have excess fluid taken off. i also had a low pump speed which helped preserve remaining function. The good news is I did feel a lot better once started, the energy came back.
I too am struggling with Phosphate, like you say it's in everything, especially ready meals and cold meats.
I wish you both all the best for the future
Regards
Ian
User
It could just be the cancer cells dying off, Essexbabe
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Hi Barbara.
Long time away from here so catching up some. Tony and yourself are going through tough times again but hopefully as then you will pull through.
Ray
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"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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That reads hopeful news. Fingers crossed for you both.
Ray
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It’s good that he has others who will help with the driving, that’s a long round trip.
Hope you all have a nice Christmas.
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Happy New Year to you and Tony. The travelling to and from radiotherapy appointments is tiring. I found I got very tired at the end of each week, using the weekend to recover.
Hope the final 2 weeks go well.
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Last day of RT today and will be seeing Tony's consultant. probably why I have been up since 4. He hasn't had any bad affects from the RT so that was good although the travelling has made him very tired, will be glad when today is over though. It does look like it has not made his kidneys any worse though as on his last blood test his kidney function was the same as when he started rt.
regards barbara
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Good luck today with both the last RT session and with consultant appointment.
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Good news for you Barbara, I hope you slept better last night?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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That's brilliant news, Essexbabe - how wonderful.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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I am so pleased for you both
Barry
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Great news. As you say onwards and upwards.
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What a blessing! So very happy for you both.
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(Does the Homer Simpson thing) Whoo Hoo!
User
My husband was started on Abiraterone as a first treatment along with hormone injections and so far he’s had a relatively easy time of it with no pain
User
Hi Barbara,
Good to hear that Tony’s PSA has not increased as much as you thought after receipt of confirmation letter. Hope all goes well for the next 3 months.
Best wishes to you both.
Angex
User
Hope you get some good news essexbabe
User
🤞🤞for both
Good luck
Cheers
Bill
User
Hi Barbara ,
Good luck for Tony ,
not sure if my posts are going up ok
but thinking of you both
Barry
User
Hi Barbara,
Good Luck to both of them.
You are all in my prayers.
Steve x
User
Fingers crossed for good results Essexbabe x
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Hi Barbara,
You can do without all that added stress. Hope all goes well with Tony’s results.
Angex
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We’ve just got back from Southern Spain and had a wonderful time! It’s all about making good memories isn’t it? Quarantine now but nearly finished X
User
Sorry to read about the PSA rises. Mallorca sounds amazing to me at the minute, sounds like you had a nice time there.
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It was lovely there, we where in a private villa and when we ventured out every one had masks on and social distancing was in place every where, felt much safer than in sunny skegness. x
User
So pleased that you managed to get to Mallorca- fingers crossed that the progression stays slow x
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Bit of good news here, Tony has had the first one of his cataracts done and he can watch tv clearly already, booked in to get the other one done on 14th october.
regards Barbara x
User
How lovely that must be for him !!
Best wishes x
If life gives you lemons , then make lemonade |
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Thanks Chris, he should have been having them done in march but then lockdown came along.
regards Barbarax
User
Cataract operations are amazing!
User
Saw Tony's renal specialist yesterday and he has confirmed that dialysis will be needed soon, the predicament is I showed him the last letter from Tony's oncologist and Tony will have to make a decision on what he wants to do, he is seeing renal Dr again in 3 weeks after he has had his other eye done, Dr is going to arrange for Tony to have a blood transfusion as his hb is down to 80. Seeing the oncologist is November about next steps as the treatment at moment is not working. The renal dr has said it is up to Tony about dialysis and how much it will impact his life and also how long he is likely to have left due to the cancer, if he is told 2 to 3 years dialysis is probably worth it but if it is 6 months could be a different matter. I have told Dr M (renal) that i will try to get Tony to talk about it and see what he wants to do, I have also said to Tony to maybe talk to our daughter about it, it is so hard to get him to open up because he really does not want to know about his illnesses, he tends to bury his head in the sand and just do what the doctor advises but now he really does have to make a choice.
regards Barbara
User
Tough decisions, thoughts are with you..
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Thinking of you both. It is a very frightening time for you X
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Wishing the best news possible for you both.
As always thinking of you
Ray x
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Thoughts are with you both.
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A big virtual (((hug))) from me Barbara - we haven't had many of those on here recently.
Edited by member 25 Nov 2020 at 11:02
| Reason: Not specified
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
Tony & Barbara,
I hope they are able to help and are able to sort out some suitable treatment at this difficult time.
You are in my thoughts and prayers.
Steve x
User
How frustrating Barbara. Good to hear PSA rise has slowed and time on abiraterone is extended. Best wishes for Monday’s telephone appointment.
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update on Tony's PSA 6.9 in august, 14.4 sept 15.4 Oct, Tonys oncologist has also put in letter he would be surprise if it was 3-6months unless there was some sort of emergency but on the phone he did mention 12 months . I think this will probably rule out Tony going on dialysis but will find out on monday what renal dr has to say.
regards barbara.
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All the best for Monday Barbara. Thinking of you both.
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Tony spoke to his renal specialist today, he agreed he did not need to go on dialysis just yet and confirmed he had heard from Oncologist, he asked Tony if something happened and it was an emergency and he was rushed into hospital would would he want them to dialysis him if needed and Tony has said yes he would. His next appt with renal is in 2 weeks so appts are getting closer together and that is quite scary, makes things all too real, I dont think Tony realises quite how serious things are getting or if he does he is just shutting it out.
regards Barbara
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I’m sorry to hear this Barbara. Stay safe and take care x
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Sorry to read this Barbara. Take care.
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If life gives you lemons , then make lemonade |
User
Hi Barbara,
Good news that Tony’s PSA has gone down. Hopefully Tony’s energy levels will pick up following the transfusion today.
Thinking you both.
Ange x
User
Good to see a PSA fall Barbara. I hope Tony feels the benefit of the blood transfusion.
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Hi Barbara,
let us know how you get on at the appointment on Wednesday.
xxx
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Pleased to read that the new blood gave him a boost. The PSA rise isn't too steep so hopeful that the onco conversation will be positive x
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Good luck to you both and may palliative days be long lasting.
Ray
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Good luck and may it work for ages x
If life gives you lemons , then make lemonade |
User
Just completed 9 months on Abiraterone. A very smooth ride indeed.
My PSA has started to rise once again so Enzalutamide is next on the menu.
My best wishes to Tony and may his "palliative care" last for many years
Regards
Dave
"Incurable cancer does not mean it is untreatable and does not mean it is terminal either" |
User
Hope the Abiraterone does the job for a long time.
|
User
I have now been on abiraterone for almost three and a half years , no side effects I can tell and PSA has been steady at 0.14 for over 6 months.
still running ultramarathons and have finished day two of a three day charity trek for PCUK at over 30 miles a day so it can last a long time as I am currently still living testimony.
Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019 |
User
Good luck
John was put on Enzalutimide in January but I’m thinking it has now failed due to a big increase in pain this last week or so, from the main tumour site. We have an oncology appointment on Monday so will discuss with them. We were told to take BP twice a day on Enzalutimide due to the danger of malignant BP. It’s become routine, it’s surprising how different it can be from one day to the next but so far it’s been mostly ok except for when he had sepsis.
Fingers crossed Tony does well, our men are pretty amazing aren’t they?
love Devonmaid xxx
User
Hi Devonmaid
Thankyou and yes they are pretty amazing, we have to take Tony's BP once a week and so far it has been ok, I hope John gets on ok on Monday and the Enzalutimide has not failed so fingers crossed for John.
barbara xx
User
Hi
Tony has been on abiraterone now for 4 weeks, his PSA has dropped to 1.2 and his scan on Monday came back as stable, he has had no side effects at all apart from his energy seems to be returning, so far so good.
Barbara.
User
I was on aberaterone for about a year until it stopped working,but had no side effects at all.
Palliative seems to be used for different things in different places,but basically refers to a treatment which will slow the progress of a disease,and often stop it in it's tracks,but is not a " cure "
Health workers often seem oblivious to the sensitivity patients feel when such words are used.
Hope you have many more years together.
Edited by member 11 Jul 2019 at 20:41
| Reason: Not specified
"Terminal " does NOT mean imminent!! |
User
Great news and long may it last
love Devonmaid xxxx
User
Tony saw chemo nurse on Monday and PSA is now below 1 not sure of exact figure as she didn't give it but said it was almost undetectable so that was good, the bad news is Tony's kidney function is now down to 8 and his renal doctor has said he will start him on dialysis at 7 so that is not good, don't really no how Tony will cope with 3 days a week on dialysis sat at a machine for 4 hours at least and until they get it right he will have to go to Lincoln to get it done, will have to use hospital transport as he will not be able to drive after the dialysis until they see how he reacts to it, that means he will be all day as the hospital he will go to is at minimum an hour away.
Barbara
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Hi essexbabe,
I too got hit with PCa and Renal failure at the same time in late 2017. Had the radical surgery which seems successful so far, but had to go on Haemo for a while and then transferred to PD. I then had a PD induced hernia, which proved to be most fortuitous as when I stopped dialysing they discovered some renal function had come back!
Anyway, having had both modes of dialysis, I can firmly say I preferred PD, after the initial training, there were few hospital visits and many more benefits. Is your OH eligible for this modality?
All the best,
Ian
User
Hi Ian
he did think about PD but decided on Haemo, he is not very good at following instructions and I think I would have had to do all the set up etc so decided against it, he has had ckd for at least 10 years and hasn't had any side effects from it at all so was hoping to keep off dialysis for a bit longer, what with the hospital visits for kidneys and PC we feel that we are there all the time at the moment, 4 hospital appts in the last 2 weeks alone, still could be worse.
regards Barbara
User
Hi Barbara,
I'm going to come across all evangelical, so apologies in advance. As Tony won't be having a transplant he will be on the big D for life. Therefore keeping the residual function even down to 0.5 GFR is beneficial in maintaining health. Haemo shuts the kidneys down quite fast and then the fluid and diet restrictions hit hard. PD helps preserve remaining function. If you do CAPD with a GFR of 7 you can probably just do 3 exchanges a day which = 3 * 30 mins which = 10.5 hours a week; a lot less time than Haemo when the travelling and waiting around is taken into account. Plus you are in control. Travelling home and abroad is much more doable, in this country you just take the fluid with you in the car. I did a couple of trips close to home to gain confidence, and then you're off. A weekend abroad is all about using one suitcase for D stuff and again independent. Please look into it for QOL, I've done both and PD is so much more flexible.
All the best,
Ian
User
thanks Ian
we had thought about it but have decided against it, if he did PD it would be down to me to do the organising of it making sure everything was sterile and putting him on and off of it, I would be completely tied to it and don't feel I could commit myself to that.
Tony finished 10 rounds of chemo in may and is not that good at looking after himself , Taking his medication at the right time etc and I think the pd would put even more stress on me. Tony will be 75 in nov (was 61 when diagnosed with PC) he has also had a stroke at 66 and then diagnosed with ckd a year after that. He is at the moment trying to get his phosphate level down as it is too high and that is a nightmare in itself as virtually everything has phosphate in it. Thanks for your kind reply but he will be sticking to the dialysis.
all the best
barbara
User
Hi Barbara,
I understand your concerns and yes you do have to be very motivated to do PD correctly and safely, I am a lot younger and wanted to stay in work. It is what works best for you, and what you feel you can sustain long term.
Just another point though about Haemo. I started at GFR 7 but only had to do two sessions a week, and because I still passed enough urine (I got some strange looks from fellow patients as I was the only one asking for a bottle halfway through!), never had to have excess fluid taken off. i also had a low pump speed which helped preserve remaining function. The good news is I did feel a lot better once started, the energy came back.
I too am struggling with Phosphate, like you say it's in everything, especially ready meals and cold meats.
I wish you both all the best for the future
Regards
Ian
User
Tony saw the chemo nurse yesterday and PSA is now 1.7. was 0.07 4 weeks ago so has started to rise quite quickly I thought but the nurse seemed as if it was ok, Tony see's his oncologist for the results of a scan he had at the beginning of the month on 30th October so will find out then what is going on, hopefully node in the back is staying stable. Tony has not had any side affects from the abiraterone so hopefully it is still working.
regards barbara
User
It could just be the cancer cells dying off, Essexbabe
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Hi Barbara.
Long time away from here so catching up some. Tony and yourself are going through tough times again but hopefully as then you will pull through.
Ray