Anyone taking Darolutamide develope asthenia, a known side effect? I've read similar SEs with Xtandi, so is this with all lutamide drugs?

[JLS1]

My husband, who is mCRPC started Darolutamide 1 month ago. Shortly after, he started to become more weak in his legs, esp his knees. Last week, after taking Darolutamide for 3-1/2 weeks he suddenly developed asthenia (abnormal physical weakness or lack of energy). I had to run out and buy him a walker!! He's stopping the Darolutamide (after taking if for exactly 4 weeks), to see if this may help. If it does, and it's determined that the Darolutamide is working, then perhaps his MO can reduce the dosage to avoid the severe weakness.

fwiw - my husband was diagnosed in Jan/Feb 2017 with mets throughout his spine (in hidsight I see his blood test results indicate PC in his marrow too). He was otherwise completely healthy and his PSA was only in the mid/high 4's. He did the SOC treatment with Docetaxel chemo, then the cancer came back a couple months later in his lower spine, so he had 10 RT treatments to his L1-4, Jan 2018, During this time (while not being on any systemic treatment other than Lupron shots every 3 months) the cancer spread to his liver, so he did 1 round of Jevtana/Carboplatin to get liver mets, but his RBC and Platelets plummeted, (w/ blood tests indicating PC in his marrow) so he couldn't do any more. No surprise given the RT to his pelvic area, where most of our blood is 'made', and add to that the chemo is known to be very tough on blood counts!! MO then put him on Lynparza (he had somatic BRCA) , then a couple months later added Zytiga and Xgeva. This worked WONDERFULY for over 1-1/2 years! Life was almost completely 'normal'!! Last summer this combo was losing effectiveness, so MO took him off the Lynparza (because it would be too hard on his blood counts with Xofigo). MO also switched his steroid from prednisone to dexamethasone (to extend Zytiga) then started Xofigo last Sept. It seemed to be working well for the first 2 infusions, the 3rd was questionable, and after his 4th Xofigo, he suddenly developed bone marrow failure and has been getting transfusions regularly since then. CT Scans and MRI didnt show any progression, but PSA was rising, so MO assumed the cancer progression was ALL in his bone marrow!! Research was showing the clinical trial for Proxalutamide was working very well for mCRPC patients who failed Zytiga. A wonderful oncologist in SC almost got him into that trial, but then he was rejected due to the one shot of Jevtana/Cabazitaxel he had!! Our MO said Darolutamide is almost the exact same as Proxalutamide, so we felt it was worth trying. It's almost impossible to find any treatments or clinical trials for patients with bone marrow failure. I'm hoping and praying that will soon change, esp if we discover the Darolutamide isn't right

in Edit (1pm, Monday, 3/9/20:

the sudden weakness coincides with when he started trying medical marijuana, and a few days before that, he switched from slow release oxy to slow release morphine (because the palliative care specialist felt it may work better), - both which can cause muscle weakness, esp the marijuana. So that may be at least contributing. Also, further research revealed that both marijuana and morphine can cause platelets to drop! So, he's switching back to the slow release oxy. He wasn't needing any pain meds until the last couple weeks.

[ctarleton]

Wow. He has certainly been through a lot of treatments during the past 3 years. I've known men who have been on several of those treatments, and I take my hat off to anybody (and their caregiver) who has gone through all it takes to live through everything each one entails. I am sure the intensity of the past 3 years has not been easy.

FYI, I've been on Xtandi (Enzalutamide) for over 3 years. I have general fatigue, but not specific muscle weaknesses in my legs. A small percentage of men on Xtandi have been reported as having experienced more falls. Older men are probably wise to take care and use balance and walking aids if the think they may need them.

I hope your doctors are being realistic and up-front with you about your options and general expectations after having bone marrow failure or invasion, and developing dependence upon frequent blood transfusions. Sometime a cancer that is already invading bone marrow is hard to stop, or may be pushed over the edge by a radiation-to-bones drug like Xofigo (Radium 223), or will not respond well enough to something like Procrit (Epoetin Alfa), or can be held at bay only just so long with blood transfusions that become less and less effective over time.

If he remains transfusion dependent, you may want to revisit his and your family's general end-of-life planning, documents, and desires. The book and video by Atul Gawande, "Being Mortal - Medicine and What Matters in the End"

is a good general conversation starter.

pbs.org/video/frontline-bei...

I do hope the Darolutamide works well to turn things around. Good Luck! and keep us posted.

Charles

[Grumpyswife in reply to ctarleton]

Good Advice and I just happen to be reading that book right now.

[Hidden]

It could be the low blood counts and the cancer causing his weakness. How low are they?

Stopping the Darolutamide may help to determine if it's contributing.

[Tall_Allen]

Darolutamide doesn't activate the GABAA receptor like all other antiandrogens and sedatives do, so it is less likely to cause fatigue. But fatigue is still the biggest side effect. It is also one of the principal symptoms of advanced prostate cancer with bone marrow failure, and is to be expected.

[JLS1 in reply to Tall_Allen]

I forgot to add that the sudden weakness coincides with when he started trying medical marijuana, and a few days before that, he switched from slow release oxy to slow release morphine (because the palliative care specialist felt it may work better), - both which can cause muscle weakness, esp the marijuana. So that may be at least contributing. Also, further research revealed that both marijuana and morphine can cause platelets to drop! So, he's switching back to the slow release oxy. He wasn't needing any pain meds until the last couple weeks.

[Danielgreer]

Hi JLS, I’ve been on Darolutamide for about 8 months. I’m not experiencing the asthenia but I am experiencing fatigue for a 2 to 3 hours after taking it. Hope your husband can stay on the Darolutamide since it is a good drug.

[JLS1 in reply to Danielgreer]

Our MO gave it off label since my husband is mCRPC. Are you the same, and if so, how long before you knew it was working ? - or are you still hormone sensitive, which it was approved for.

[Danielgreer in reply to JLS1]

I have mHSPC, which is also off label, since I believe it’s on label for non metastatic. I knew it was working shortly after I started since I could “feel” the drug shrinking a tumor on my thoracic spine and it lowered my PSA on a lab test I took about a month after I started.

[Hidden in reply to Danielgreer]

Can it be taken at night before bed to help with the fatigue?

[JLS1 in reply to Hidden]

That wouldn't make much difference since it's taken twice a day, with food,. If you take it before bed with a snack, then you'll be shifting the am dose to a later time too.

[Hidden in reply to JLS1]

Ok thanks.

[Danielgreer in reply to Hidden]

Hi Gregg, I think JSL had a good response, you have to take it with a meal so you’re fatigued after dinner. You could take it with a snack later in the evening. It does act like a diuretic, so you would have to get up to go to the bathroom if you take it before bedtime. I guess the trade off is you either take it with dinner and have fatigue in the evening before bedtime, or take it at bedtime and have to get up to go to the bathroom a few times while trying to sleep. I take it with dinner since the fatigue isn’t that bad for me.

[Sxrxrnr1 in reply to Danielgreer]

I too am on Darolutimide. Your reference to acting as a diuretic is a new one on me. Could you provide a reference. I have been experiencing what I believed to be an overactive bladder. Have attempted to eliminate all acidic or spicy foodstuffs from my diet with moderate success. Had not considered Darolutamide could considered.

[Danielgreer in reply to Sxrxrnr1]

Hi Sxrxmr, on second thought, maybe it’s not the Daro that causes frequent urination. I couldn’t find frequent urination as a side effect in the drug instructions. The times I took it before bedtime I do remember getting up to urinate more often, but maybe that was a coincidence. May have been the Lupron and just a coincidence that I had to get up a few times. I took it maybe 5 times so far before bedtime.

[JLS1 in reply to Sxrxrnr1]

I see from your profile that, like my husband, you are also CRPC. How long have you been on Darolutamide? Do you feel it's working? If not, this may be helpful: healthunlocked.com/advanced...