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Posted by terryknowles on Aug 12, 2019 7:10 pm

Hi my name is Terry, my medical oncologist wants me to start taking apalutamide in addition to hormone six month injection to assist in reducing the tumor in my right sacrum. which was discovered after my prostatectomy in January 2019. This medication has only been available in Canada sine June 2019, and finding any type of trial results which describe this as being helpful is not readily available. The side effects are possibly quite severe and in some cases scary. Has anyone had any interaction with Apalutamide, especially in conjunction with using hormone injections for treatment for prostate cancer, especially following a prostatectomy.

Re: Apalutamide

Posted by Wendy Tea on Aug 12, 2019 7:16 pm

Hi Terry terryknowles‍  welcome to the site. I don't know anything about this drug. My brother is currently in a similar situation as you. He is awaiting a CT scan and radiation with hormone therapy.
As a woman with cancer, hormone therapy seems to be one of the key factors in treatment. I am on a daily pill for 5 years.
You will receive some helpful advice from the site and take a look at the different groups you can join. There is one group relating to men's health.
Good luck in your journey!
Wendy Tea

Re: Apalutamide

Posted by Lianne_adminCCS on Aug 13, 2019 3:58 pm

Welcome terryknowles‍ 

I found this on cancer.ca 

I want to tag MrFido‍  into this conversation as well. If I am not mistaken, MrFido‍  has some experience with this particular drug

How has your other treatment gone for you up till now Terry?


Re: Apalutamide

Posted by MrFido on Aug 14, 2019 11:26 pm

I MIGHT have been treated with apalutamide, as part of the ATLAS clinical trail, which is still ongoing.
The reason I say might is because I was part of a double blind study.
IF I took apalutamide, it would have been for a period of about 1 year.
The alternative in the study might have been placebo.
ALL members in the actual trial also were given Eligard (aka Lupron) for the duration.
The ATLAS trial (for me) was supposed to go for 28 monthly cycles using ADT and radiation treatment for 'advanced / aggressive' prostate cancer.
I withdrew from the clinical trail due to ADT side effects. In my case, I experienced virtually every bad side effect you could imagine.
The treatment became worse than the disease, at least, in my case.
When I quit the apalutamide, (or placebo ?) I continued to take the Lupron for another 4 months.
After that last session, I quit ADT outright

What about apalutamide ?
I believe it to be a step forward in finding drugs 'better and/or improved, to fight PCa when compared to the current options.
It was designed to replace 'bicalutamide'. It is much more powerful than the original version, dating back into the 1990s.
In fact, Lupron and ADT treatment(s) can be dated back into the 1960s for the real pioneering aspect of it.

In YOUR case, I'm not in much of a position to say yea or nay. There is a takeaway I got from reading your story and the highlight is
WHY they would suggest it and the timeline that goes with it.
"Debulking' a tumour means to try to shrink it. ADT does it slowly, over a period of months. That's why the 6 months jumps out at me.
This might be a necessary choice to make. The side effects will vary from patient to patient -  some men have little or no problems at all.
It depends on a list of variables that I won't get into now.
I believe you'll need to trust your medical oncology team, while doing more research / reading to get a better grasp about the overall treatment objectives.
I do have an opinion about ADT that I'll share - I'd rather be taking apalutamide than Lupron .

Perhaps you can share more info about your age and staging. I might hve more useful comments to offer after knowing more about your case.

Regardless, I wish you well in your fight to recover your health ............

Re: Apalutamide

Posted by terryknowles on Aug 15, 2019 12:37 pm

I read your reply with great interest, in my case I was diagnosed in September 2019 with prostate cancer and I was told that I have ductal adenocarcinoma and it is an aggressive type' After having bone scans and CT scans it was decided and I agreed to remove my prostate. This happened in January 2019. Following 3 months of post operative exercises I was examined at the Victoria Cancer Centre. The oncologist told me that although my PSA was now at 0.3 they wanted to wait 3 months, with monthly PSA tests to see if my levels either increased or declined. In my case it rose, and because I only now had a microscopic cancer on my bladder, and  the cancer was also in my sacrum it was decided to have a PET scan, this did happen in June. After this I was told that my name had been put down as a candidate for the SABR radiation and at that time my urologist, my family doctor and my oncologist at Victoria were all quite jubilant saying this could really help in my case.
I then went for another bone scan and a MRI. I then got an appointment to see the radiation specialist in Victoria and he told me that they wanted to wait until late September after another bone scan and another MRI to see in the hormone 6 month injection I had in July was shrinking the cancer in my sacrum, as the tumor was 3mm from a nerve associated with my right leg. 
My PSA had increased monthly to 0.95 prior to the hormone shot, and after my last PSA test following the shot had dropped to 0.82. Therefore, the wait seemed to me to be affair assumption. It was said that the cancer on my bladder was expected to go away due to the hormone treatment.
It was during this meeting that Apalutamide came up, it was a very hard sell from them, I was not happy with the inconclusive information they gave regarding whether or not it would be of help to me. I did a lot of research on this medication, it has only been available in Canada since June 2019. The information on the possible side effects ranged from light to extreme and the fact that women should not touch the pills or inhale the dust did arouse my thoughts on my using Apalutamide. There is also a restriction on ones movements as you have to get monthly blood work and see the oncologist on a monthly basis due to the possibility of high blood pressure as one of the side effects. I did not find any real information to say it actually works or not, as some study information did state they could not say whether it helped or not when it was taken in conjunction with hormone treatment. In fairness other results did say it showed some favourable results. I felt then and still do, that the possible side effects and risks associated with taking the medication, and the possible effect on my comfort of life, outweigh the known  or unknown benefits of Apalutamide. In any case I decided to wait and see what the results will be in late September. I am not going to comment any further on my situation until after the results in late September, except to say it is now over 7 months since I had the prostatectomy.


Re: Apalutamide

Posted by MrFido on Aug 16, 2019 9:10 am

It is important to note things about clinical trials.
Phases 1, 2 and 3,assuming a drug gets to 3, something positive / useful has occurred.
The fact that Canada has approved it suggests to me that this is a positive outcome.
During my trial, this drug was NOT going to be approved in Canada AFTER the trail - at least without going through a bunch of obstacles.
Therefore, something fairly significant tipped the balance AND attitude of Health Canada.

I recall taking 'bicalutamide' early on in the cancer world and do not recall any side effects (at least nothing major or obvious.
Assuming apalutamide is a step forward, I would prefer that to Lupron and any other 'related' agonists.
IF they are suggesting simultaneous agonists and antagonists, they are trying to treat the tumor from all fronts.
Those forms of ADT support each other, seeing as they attack from a different front.

A few tips I learned about side effects.

IF you go the 'Lupron route', I've read that monthly shots cause less side effects (swings). I'd avoid the 3  and 6 month injections.
Lupron has a significant half life that can take months to years to clear out. Lupron also has 'permanent side effects if the duration approaches or exceeds 2 years.
Apalutamide has fewer / lesser side effects, by design. Apalutamide, in development was supposed to be an upgrade to an existing drug.
My understanding is that they succeeded in the improvement strategy, which was also to try to lessen side effects.

Finally, there is a website I use a lot for my 'go to place' for prostate cancer forums and discussions.
I refer you to 'healthunblocked.com'.
You will find a ton of resources, archives, topics and Q & A sessions on many topics.
I would ask my questions THERE.

Best wishes moving forward .....