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Experience of Apalutemide?

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User
Posted 08 Jul 2024 at 09:55

Hello.


My oncologist proposes starting me on Apalutemide in a couple of weeks time, and I would be interested to learn of anyone's experience of this treatment. It will be in conjunction with my current three-monthly Zoladex injections, which have been successfully controlling my testosterone but have stopped reducing my PSA. This is now doubling every three months. My PC is locally advanced, symptom-free, and with no sign of any distant mets so far.


Thanks.

User
Posted 06 Aug 2024 at 15:57
I wanted to add an update to this thread. I began Apalutamide just over a week ago and, so far, no major side effects. When I signed the consent form, there was a long list of possible and very scary side effects. I was already experiencing hot flushes from the Zoladex and these have not increased noticeably, although I have been taking Medroxyprogesterone for a couple of months to help with these. My fatigue seems slightly worse, but I am factoring in the hot and humid London weather, so this might improve once cooler weather arrives. I have experienced some dizziness - not the weaving about, falling over kind - but noticeable and unwelcome.

My next PSA test is due later this month, and I am hoping for a reduction. It has continued to double every two months. I will update once more when I learn the results.
User
Posted 09 Jul 2024 at 16:06

Hi Forestjohn,


I was diagnosed just before Christmas 2021 as Gleason 5+4=9, T4 N0, and treatment began early 2022. Initially, we were aiming for a curative outcome but in the last three months my CAT scans showed that, despite the chemo and RT, there had been an uptake with my PC. It remains locally advanced, with no distant mets. The next step for me is Apalutamide. Like you, I will be on ADT for life.


My Chemo and then RT were over by Christmas 2022. The chemo shrunk the PC 'considerably' and it was hoped that the RT would take care of the remainder. It didn't work out that way. Although unpleasant, the chemo and RT did not prove too arduous. I experienced most of the anticipated side effects, but they passed. The uptake was diagnosed about 16 months later. My father and brother both died from the disease, so I was always at high risk. I think of it as the family curse.

User
Posted 20 Aug 2024 at 11:50
Another quick update. After my first month on Apalutamide I have just received my latest blood test result. My PSA has dropped from 11.87 last month to 2.45 this month. I find such a large decrease in such a short space of time very reassuring, and I am hoping for a further reduction when I get my next test.
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User
Posted 08 Jul 2024 at 12:07

Hi - I am on appalutamide and zoladex. I am doing ok on them, continuing to work and lead a relatively normal life. Only noticeable side affects are loss of libido and hot flashes. I exercise pretty much every day, which so far is keeping weight in check. 

User
Posted 08 Jul 2024 at 13:54

Hi P822.


Thanks for your reply. Your experience is encouraging. Zoladex has pretty much wiped out my libido and hot flushes and I have become old friends over the last two and a half years of treatment. I have read as much as I can about Apalutemide, but the literature, helpful as it is, just goes into the nuts and bolts of the treatment. It's much more informative to learn how it is actually impacting anyone actually on it.


Weight loss is listed as one of the possible side effects. This does not bother me as I have gained more than 10 kilos since starting Zoladex. Bone and joint pain prevents me from taking daily exercise - Zoladex is again the culprit - but I manage some time in the rehab gym every few weeks.


Thanks again - and all good wishes for the success of your treatment.

User
Posted 08 Jul 2024 at 20:04

Hi


I'm another on apalutamide; just over two years in. However, as I have advanced prostate cancer, I went for orchidectomy rather than the three month injections.


I'm still working and rowing on an erg regularly, quality of life still reasonable. However, I'm still getting hourly hot flushes, I do get more tired, libedo is zero and I've lost most body hair (although more on my head-result!)


So apalutamide seems to work for now, although you always panic during the 3 month checks of PSA. I went this route to put off chemo and radiotherapy.


 

User
Posted 09 Jul 2024 at 08:51

Hi Forestjohn,


Thanks for your reply. I am pleased to learn that Apalutamide is working for you. From what I have read, any side effects seem to mirror those of Zoladex. I am wondering if this makes them harder to cope with. I am currently on Medroxyprogesterone to try and control the Zoladex side effects but so far without success. I have arrived at this point after I had been through chemo and RT.


May your treatment continue to work for you. Good luck.

User
Posted 09 Jul 2024 at 15:15

Hi Hieronymus 


I started off on Prostap 3, which gave me all sorts of aches and pains. As they said I would be on hormone therapy for life, I decided to go for the easy option - orchidectomy. Aches and pains mainly went, just leaving the issues as mentioned. 


You're braver than me having the chemo and radiotherapy first. How long did these give you before rising PSA lead to the recent recommendation of apalutamide? Do you feel the side effects from these treatments were justified for the time you gained?

User
Posted 09 Jul 2024 at 16:06

Hi Forestjohn,


I was diagnosed just before Christmas 2021 as Gleason 5+4=9, T4 N0, and treatment began early 2022. Initially, we were aiming for a curative outcome but in the last three months my CAT scans showed that, despite the chemo and RT, there had been an uptake with my PC. It remains locally advanced, with no distant mets. The next step for me is Apalutamide. Like you, I will be on ADT for life.


My Chemo and then RT were over by Christmas 2022. The chemo shrunk the PC 'considerably' and it was hoped that the RT would take care of the remainder. It didn't work out that way. Although unpleasant, the chemo and RT did not prove too arduous. I experienced most of the anticipated side effects, but they passed. The uptake was diagnosed about 16 months later. My father and brother both died from the disease, so I was always at high risk. I think of it as the family curse.

User
Posted 06 Aug 2024 at 15:57
I wanted to add an update to this thread. I began Apalutamide just over a week ago and, so far, no major side effects. When I signed the consent form, there was a long list of possible and very scary side effects. I was already experiencing hot flushes from the Zoladex and these have not increased noticeably, although I have been taking Medroxyprogesterone for a couple of months to help with these. My fatigue seems slightly worse, but I am factoring in the hot and humid London weather, so this might improve once cooler weather arrives. I have experienced some dizziness - not the weaving about, falling over kind - but noticeable and unwelcome.

My next PSA test is due later this month, and I am hoping for a reduction. It has continued to double every two months. I will update once more when I learn the results.
User
Posted 20 Aug 2024 at 11:50
Another quick update. After my first month on Apalutamide I have just received my latest blood test result. My PSA has dropped from 11.87 last month to 2.45 this month. I find such a large decrease in such a short space of time very reassuring, and I am hoping for a further reduction when I get my next test.
User
Posted 25 Aug 2024 at 00:10

Great news! Let's hope it keeps going down.

User
Posted 06 Sep 2024 at 12:11

Hi, and thanks to everyone who has contributed to this thread.


I am currently six weeks into my course of Apalutamide and some unpleasant side effects have started to become apparent. There is a constant mild dizziness rather like motion sickness and also pain and stiffness in my joints. Joint pain is listed as a common side effect.


I would be interested to know if anyone else on Apalutamide has experienced similar and, if I stick with the treatment, they will disappear of their own accord once my body becomes accustomed.


Thanks.

User
Posted 10 Sep 2024 at 17:14

Hi there - just saw this and wanted to comment.


My dad was diagnosed with his PSA extremely high at 1700. Was immediately put on Firmagon injections and apalutamide, but was spared chemo initially because of his age (he's in his early 80s). The apalutamide worked very well for him and his PSA dropped to 1.7 after about 8-9 months but that was the lowest it got, and then it started to creep up about a year later. It's worked for longer than that for many men. My dad tolerated it well, did not complain about hot flushes, although he got quite emotional - plus we all felt that over the months, he grew a much thicker head of hair!


Best wishes, Ru


 

User
Posted 22 Nov 2024 at 10:24

I thought it was time to post an update to this thread. I stopped taking Apalutamide nearly ten weeks ago, as it was beginning to cause me severe joint pain, particularly in my lower legs and hands. It was clearly doing what it was designed to and had lowered my PSA from 11.87 to 1.85 at my last test but at the cost of these side effects.


I was able to see a consultant rheumatologist, and she told me that she was starting to see other patients on Apalutamide in her clinic with similar side effects. My joint pain was diagnosed as arthralgia, which is akin to arthritis but without any swelling or inflammation. She gave me a shot of steroids in my backside that has helped considerably with my lower leg pain, but the pain in my hands continues to be a problem.


Within the next few weeks, I will have to make the decision to restart Apalutamide, most likely at a reduced dose. I was taking 4 x 60mg tabs a day, and I wonder if anyone has experience of a lower dose.


Thanks.

User
Posted 14 Dec 2024 at 12:28

I have been on Apalutamide for 20 months, along with the 3 monthly injection ( Prostap) . I had RT after 6 months on the primary cancer. PSA has dropped from 56 to 1.5 . I suspect it won’t go much lower. I am lucky I feel good with no joint pain or fatigue . Failed to mention stage 4 Gleason 9. I am happy so far still doing lots of excercise , on my bike (25km per day). I am really glad I found this forum. thanks fro everyone else’s posts they really help!

User
Posted 28 Jan 2025 at 11:13

Time for another update. I am back on the Apalutamide, but at a reduced dose, 180 mg rather than the 240 mg I started off on. Too soon to have any of the adverse side effects that caused me to discontinue last time around. Then I experienced joint and bone pain (a common side effect) and dizziness (an unknown side effect). A whole body nuclear bone scan showed no cause for the joint pain - and most importantly, no mets. A pelvic CT scan showed that my PC had not spread - a worry while I was off the Apalutamide. A huge sigh of relief on both counts.


Further tests found that I had cardiac arrhythmia, the most likely cause for my dizziness. I am now on the waiting list for an ablation and a pacemaker. There was some concern from the cardiologist that the Apalutamide might aggravate my newly diagnosed heart condition, but I have been cleared for the restart. Interesting times ahead for me, I think.

 
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