Abiraterone and its affect

User

Posted 26 Jan 2025 at 22:23

Update on how things are going since I lasted posted.

I’m at staging T3b N1 Mx.

Consultant advised HT RT was only option as the cancer was too advanced for surgery.

Had PSMA Pet scan to confirm that it had not travelled elsewhere in my body. The results came back OK relieved at that.

The HT treatment started Bicalutramide 50mg for 28 days and them injection of Triptorelin in the buttocks which would be repeated in 6 months.

Although the Pet Scan confirmed the pelvic lymph node was related to prostrate cancer

the higher lymph node in the abdomen was not.But an area of interest was noted which required a MRI Scan of whole spine . The result of MRI was OK

Now I was transferred to oncology meeting in January.

Oncologist recommends a second generation HT drug Abiraterone (not licensed in England but is in Scotland) which I had to sign for.
The drug was Abiraterone 500mg x2 and Prednisolone 5mg take this for 56 days prior to RT in late March early April probably 20 fractions.

Finding Abiraterone is causing blood pressure to go into hypertension (never had that before) so local GP when consulted gave me Amiodipine 5mg Oncologist was consulted about this prior to taking it .

HT causing other problems which are inconvenient to say the least the urgency to need to find a loo ,slowing down as I was quite an active person.ED old boy like a piece of play doh and at times taking some finding, and it’s not the cold either.

Can anybody say if they are experiencing similar problems?

Dave

User

Posted 30 Jan 2025 at 22:02

Hi Dave

We've been told that taking the Abiraterone for the 2 years will cut down the chances of the cancer returning by around 40%. That convinced us that it was worth the significant risks of taking it. I haven’t heard of it being used only until RT but I dare say different oncologists have different “favourite” treatment paths. Hope it all goes well for you.

User

Posted 17 Feb 2025 at 00:14

Hi Dave

Kenny’s is into his seminal vesicles but doesn’t seem to be in his lymph nodes, thankfully. The oncologist described his cancer as “high risk and aggressive” but there seem to be many guys on this forum who’d been given the same diagnosis over 10 years ago and are doing fine, so we’re staying positive.

Kenny is disturbed by the arrival of what he calls his Buddha Belly, which is getting bigger even though he’s being very careful with his diet. I gather from Decho and others that it is likely to be hard to shift even after the HT finishes. We’ll see if we can start tackling it after he’s recovered from RT as he has enough to cope with just now.

Take care, and keep in touch.

Edited by member 17 Feb 2025 at 00:15 | Reason: Not specified

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User

Posted 27 Jan 2025 at 00:23

Dave, I am expecting to start Abiraterone and prednisolone in the next couple of weeks. I am in England but using my wife's health insurance. Google comes up with a Dec 2024 NHS England statement that says Abi can be used in England, its perhaps in particular situations. My blood pressure is already quite high even on medication. We will have to compare notes as we progress

All the best.

Thanks Chris

User

Posted 27 Jan 2025 at 01:41

Hi Dave

My husband is in a similar position and on the same meds other than being on Prostap rather than Triptorelin. He has been on Abiraterone since the beginning of October. It’s difficult to say whether his side effects are from the Abi or the Prostap but it sounds like you’re having much the same issues as he is. Fatigue is by far the worst one. He had awful joint pain initially too, apparently the result of muscle wastage leaving the joints unsupported, but that has pretty much disappeared since we started working with a PT at the local gym. (I’m doing it too just for moral support). His blood pressure was elevated initially and his kidneys were also affected, but both settled down without any intervention thankfully. He starts RT a week on Thursday, 20 fractions. He’s to be on Prostap for 3 years in total, and Abiraterone for 2 years (along with Prednisolone). He’s 63, T3bN0M0, Gleason 4+5, but his oncologists tells us that although there are no guarantees, he is on a “curative path”. As he’s slightly further along the path than you, feel free to message if you think we can answer anything. It’s such a rubbish journey this, isn’t it!! 😢

User

Posted 27 Jan 2025 at 14:34

Hi Chris
Thanks for responding,I assume your levels T3b/N1/Mx are the same as mine.
The Oncologist suggested taking Abiraterone and Prednisolone to further shrink the cancer prior to RT.
I thought that having the Triptorelin would be enough to suppress the testosterone in my system? The Amiodipine at the moment has brought my blood pressure down but keeping an eye on it in case it goes too low.Main problem at the moment is running water and where is the nearest toilet I am hoping this will improve over time it’s driving me nuts.

Will keep you posted as things progress
Dave

User

Posted 27 Jan 2025 at 14:40

Hi Kassy 60

Thanks for responding ,sorry to hear your husband is in same predicament as myself .I was assuming that the Abiraterone/Prednisolone was just up to when RT started and not a long term treatment.They may inform me if things change at next meeting.

Dave

User

Posted 27 Jan 2025 at 15:08

Dave, I am a couple of years older than you and 11 years into this journey. After surgery and salvage RT and some additional additional targeted SABR treatment, it is time for HT and abiraterone plus prednisolone are the proposed treatments.

Thanks Chris.

User

Posted 30 Jan 2025 at 22:02

Hi Dave

User

Posted 14 Feb 2025 at 20:54

Hi Kassy 60

Check up on 11th February where Oncologist gave me some ‘good news’ PSA from blood test on 14th February was now 4 from 27 so moving in right direction.He also confirmed as you said in last post that the Abiraterone/Prednisolone was for 2 years and that RT would be in 6 weeks BUT all lymph nodes in pelvic area would be treated so some side affects more than possible,bladder rectum.

I know it’s a minor thing in all this but how is he with taking those tablets ,could of made them smaller.

As your husband is in same position as myself how is it with him ?

Dave

User

Posted 15 Feb 2025 at 02:12

Hi Dave

Great news that your PSA is reducing nicely. Kenny’s in the same boat in that they are zapping his lymph nodes too. They appeared clear in the scans but with Gleason 9 they don’t take any chances - in the oncologist’s words, they need to throw the kitchen sink at it! He doesn’t seem bothered by taking the pills although he was taken aback when he saw the size of them! 😂

Today was day 6 of his 20 radiotherapy fractions and side effects are certainly kicking in already. No noticeable increase in fatigue over and above what he’s already experiencing with the HT, although we know that will come soon. Quite a bit of trouble peeing - we thought we were going to have to go to hospital last night, but thankfully eventually he managed to go. The cancer nurses at radiotherapy have told him to take paracetamol as an anti inflammatory and that’s made all the difference in the world! It’s getting increasingly urgent for him when he needs to pee now, and he also has dramatic wind!! Thankfully he’s got a lively sense of humour which is getting him through it pretty well. Heartburn is a major issue since his radiotherapy started but again the cancer nurses were able to advise him - smaller meals with snacks in between is helping a lot. I can’t overstate how amazing the care has been at the radiotherapy sessions. He’s able to get advice on a daily basis and reassurance when something new happens. (eg passing a bit of blood)

All the very best when you start your sessions. You may not experience the same side effects, but Kenny has found it helpful to know that what he’s going through is quite normal and will pass in time. It’s a great feeling tonight, knowing that he’s got a 2 day respite before the next session … thank goodness it’s not done at weekends too!!

User

Posted 16 Feb 2025 at 19:28

Hi Kassy 60

Good to hear that Kenny is ‘tolerating’ the RT with light at end of tunnel getting nearer and that he is being well supported by nursing staff etc at hospital. Oncologist told me I was in a high risk group on the basis of an involved pelvic lymph node(high grade disease)and as I was tolerating Abiraterone I was eligible for 2 years of this additional treatment, so that’s a good thing, (trying to take positive out of things )

I have always been 10st 7lbs since 17yrs and kept fit BUT these tablets seem to be adding extra ‘timber’ around the waist, gone from 30 inch waist to 34 inch so looking through I need to be careful as I’ll be BMI in the 30’s if I’m not watching what I’m doing.

I puzzled the consultant when I last saw him as I need to pee nearly every hour /2hours max during the day but OK during the night?? this is driving me nuts.

With be seeing GP to see what they say as it’s not one of side effects of tablets.

Well just RT to look forward to now.

Dave

User

Posted 17 Feb 2025 at 00:14

Hi Dave

Take care, and keep in touch.

Edited by member 17 Feb 2025 at 00:15 | Reason: Not specified

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