Long term side effects of apalutamide

[rogerwegner]

I have been on Apalutamide for nine months. It has been a roller coaster of medical events. I have had vertigo and a fall. Fatigue has been rough. My warfarin has been hard to titrate the dose to achieve the INR goal of 2.5. It has taken triple the dose to get there. My three year old stent in the LAD is already 50% blocked and I am having some chest pain. I am also having repeated episodes of shingles and lots of back pain. My PSA has dropped from 4.5 to 0.28. Has anyone else had a similar results?

[ctarleton]

So sorry to hear of the multiple sources of daily suffering you have been experiencing. Just when you wish there could be just one particular medical thing to be worrying about, the reality is that there are several happening at once. Sometimes it's hard, ... just so hard to cope with it all. Big Hugs to you! You seem to need some compassionate care right now.

I'm not personally on Apalutamide, but you may find some general comparisons of what previous patients experienced during prior Phase I, II, and III clinical trials for the drug at this link:

ncbi.nlm.nih.gov/pmc/articl...

Almost three years ago I went through a period of time where I was exhausted, weak, close to fainting, getting through Provenge treatment, dealing with a blood clot in my arm, and starting to have numerous episodes of Afib with Rapid Ventricular Response each month, .... about the time I was also starting Xtandi. It wasn't easy at all.

Looking back, part of the strategy I used was to deal with each thing, one day at a time, a little here and a little there. If something needed immediate care, obviously, that came first. If something required my seeing a new specialist and getting some more tests, that was "doable", in bite-sized chunks. In hindsight, I still suffered A LOT, emotionally, while it was all happening, but the blood clot was cleared, I learned to take new precautions against fainting and falling as that got better, the new drugs stabilized and then started to reduce my Afib episodes over the next year or so, and the Xtandi worked well to bring my PSA back down again to about 1% of its former value.

Support groups and dealing with the emotional aspects of it all as openly as I could with my caregiver/spouse as it was all happening was most helpful. Up days and down days happened. Tearful, frightened days and pretty good days happened. It's all been part of the experience. Some days I joked around with my spouse and said, "It's not easy being me, today.", and she would give me that look, and then we would both hug and smile about it for a while.

Charles

[rogerwegner in reply to ctarleton]

Thank you for the pep talk. It does help to hear how you have handled it so far. You are right . It must be done one day at a time. It is like playing whack-a-mole. But we are still here coping with the great unknown. Thanks again.

[tango65]

This link has a summary of the side effects of apalutamide:

rxlist.com/erleada-drug.htm...

If you have to take warfarin chronically, you should discuss with your doctors to change to one of the new oral anticoagulants such as rivaroxaban, dabigatran, apixaban, edoxaban etc. They can be used in patient with atrial fibrillation and also in patients with deep vein thrombosis etc.

[garyg0616 in reply to tango65]

FYI, my apalutamide provider, Kroeger Specialty Pharmacy, said I could not use Eliquis or Xarelto while taking Erleada. I was taking Eliquis before apalutamide. I have been taking Erleada for 13 months and my cardiologist is trying to put me on warfarin. I am just recovering from a case of shingles like rogerwegner. Jansen only mentioned a rash, not shingles in their rap sheet for apalutamide.

[rogerwegner in reply to garyg0616]

They really are not being honest about the side effects and I don't think that they want any input from the people on the front line

[WaltN in reply to rogerwegner]

The mere "rash" could also be neutropenia induced life-threatening skin infections? Have had 60 episodes of recurrent shingles *before* Apalutamide, none since (have been on preventative 4grams Valtrex daily for 14+years).

[cesanon]

Poshea in this forum is highly knowledgeable and experienced with blood thinners. I would post a thread dedicated to the subject and then invite him to comment.

[j-o-h-n in reply to cesanon]

As per your request: "stop reading my posts please. Thanks" I did not read your post.

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 07/08/2019 7:37 PM DST

[mcp1941]

While I was taking apalutamide (8 months) the worse side effect was uncontrolled hypertension. Took 3 BP meds to try and control BP with limited success. Also developed Etopic Atrial Tachecardia. Apalutamide was failing so MO took me off it and within a week my BP and EKG were back to normal.

Mike P.

[rogerwegner in reply to mcp1941]

Thanks for the reply. What drug did you use after Apalutamide?

[mcp1941 in reply to rogerwegner]

Nothing yet. Been off Erleada about 5 weeks now and will see MO on Wed. and get results on blood work. Treatment will depend on what is compatible with Multiple Myeloma treatment that I start on Mon.

[rogerwegner in reply to mcp1941]

Good luck, please let us know what you will be taking next.

[mcp1941 in reply to rogerwegner]

Visit with MO today. PSA went down a little bit. From 2.4 to 2.33. Just staying with Eligard, nothing new. See MO again in Sept. but will get PSA checked with monthly blood work for MM.

[rogerwegner in reply to mcp1941]

Thanks for the update

[WaltN in reply to mcp1941]

Yes, me too re: hypertension spikes. Ignoring it, to the chagrin of doctors.

Been on Apalutamide almost a year. My immune system has crashed, now in "chemo-induced neutropenia." Take 4 pills per day.

Has anyone had the injection to boost the immune system back to normal, or lowered doseage?

I have many other things that need done such as teeth cleaning, colonoscopy, carcinoma Mohs surgeries, pnemonia vaccine, Shingrix vaccine, etc, that are prohibited during this crisis of my immune system to below 1000 absolute neutraphils.

The good news is my PSA went from 23 to 0.2. The Apalutamide is a success but at the life-threatening expense of my immune system.

Currently also on Lupron for @14 years but its resistive now. Have not had PC surgery or radiation due to porphyria restrictions.

[tkalaf]

I am not a physician and can not give medical advice, but read the newer Darolutamide may yield similar benefits to Apalutamide ... w/o creating some of the side-effects you mentioned having. Here is a youtube: youtu.be/IgQpxSqMW7g(Not working as expected?)

[rogerwegner]

Thank you that does sound less invasive. I will see if it is an option for me.

[WaltN]

No neutropenia?

Been on Apalutamide almost a year. My immune system has crashed, now in "chemo-induced neutropenia." Take 4 pills per day.

Has anyone had the injection to boost the immune system back to normal, or lowered doseage?

I have many other things that need done such as teeth cleaning, colonoscopy, carcinoma Mohs surgeries, pnemonia vaccine, Shingrix vaccine, etc, that are prohibited during this crisis of my immune system to below 1000 absolute neutraphils.

The good news is my PSA went from 23 to 0.2. The Apalutamide is a success but at the life-threatening expense of my immune system.

Currently also on Lupron for @14 years but its resistive now. Have not had PC surgery or radiation due to porphyria restrictions.