Last week I had an ischemic stroke. It affected my right leg and right arm/hand. I woke up to a heavy arm and heavy leg but my face, smile, and speech were unaffected. It got progressively worse throughout the day and I went to the ER 9 hours after I woke up. I should have gone to the ER right after I determined it Might be a stroke. I found out you only have 3 hours after you think you are having a stroke to get administered a clot busting drug. Beyond 3 hours, the drug won’t work for you. I was a healthy 60 year old three years ago. Now I can hardly move. How many of us have had a stroke or heart attack while taking Abiraterone? Doesn’t taking Abiraterone increase your chances of having a heart attack or stroke?
I Had A Stroke: Last week I had an... - Advanced Prostate...
I Had A Stroke
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”total of 6294 patients with metastatic PC who were treated with ADT and either abiraterone or enzalutamide were included in the final analysis. Of these, 4017 (63.8%) patients used abiraterone and 2217 (32.2%) patients used enzalutamide. During the study period, 255 (6.3%) primary endpoint events occurred, resulting in an incidence rate of 4.3 per 100 patient-years. In multivariable analysis, abiraterone use was associated with a 31% increased risk of MI or stroke compared to enzalutamide (hazard ratio 1.31; 95% confidence interval 1.05-1.63; P = 0.01). The incidence rate was similar in patients who switched initial therapy from abiraterone to enzalutamide or vice versa (5.0 versus 5.6 per 100 patient-years, respectively).”
255 strokes or cardiac events out of 6200 people sounds like a not insignificant risk! Though one would have to subtract the baseline occurrence over the period (number of events in a normal population)
Might be a good idea to post the DOI so people can look at the actual study.
I assume that its this one: 10.1016/j.esmoop.2021.100261
There are many risks associated with these drugs, they are extremely powefull.
That being said, from the data in that study, IMO it's not really enough to look for incidences from people from a database to come to anything worth while because there are an infinite amount of confounding parameters. Did the people exercise, what was their age, had they had other health conditions, what's their diet, did they drink... The list is endless.
Are you going to get people who have adverse affects? There's no doubt there is. Some people will even react to aspirin. Just I think that these type of literatures aren't really something I'd be basing any decisions on.
Androgen blockade increases cardiovascular risk and metabolic syndrome (obesity, hyperlipidaemia and diabetes). It seems likely that your risk of stroke was increased by abiraterone. And if you have other risk factors such as smoking, hypertension, diabetes etc already it just adds to the mix!
Just as an aside, I have had enzalutamide for early stage 4 disease (PET mets +ve)which gave me daily then an explosive headache associated with severe high blood pressure. Apalutamide then also gave me headaches, I had difficulty with memory, started driving badly (wife observed this), rapidly put on weight and got very raised lipids - I stopped this too.
The other interesting point is that once you hit around 75 (I am 78) the addition of many of these drugs seems to make little difference to life expectancy. You just die of other things!
Oncologists need to be more honest about risks and benefits and make sure that they really understand what the patient wants - is it quality of life or quantity? What trade offs are they facing and prepared to make? Is the oncologist really focussed on treating the patient or just the cancer? They are quite different things.. ....Challenge your oncologist.
Funny thing - I'm having the Quality OL vs Quantity OL discussion with my medical oncologist this Friday. He said this will be "a long discussion..."
Backstory: My testosterone recovered after 18 months of ADT to around 350 (highest) and stayed in the 300's for about a year. Then it started dropping. This mornings test had it under 200 - it's been in constant free-fall for the past year. My PSA has been low-normal for someone who had radiation treatments (0.21 +/-0.03) until lately when it's started dropping. There is a parallel to be seen between the PSA reads and the testosterone levels (at least I can see them when they are plotted vs time..)
My GP suggested that I should talk to my urologist about T supplementation, I said I'd talk to my medical oncologist.. and that's this Friday.
I have a lot of mobility issues now, due to severe back issues, and peripheral artery disease. It's getting worse. The best back doctors I could find (NYC major dudes) told me there was a 50/50 chance of surgery making the back better or worse. These were surgeons - suggesting that surgery wasn't that great an idea for my issues.
Meanwhile, tomorrow is a stress test to see if my heart is strong enough for another angioplasty session, with stents in reserve ready to be sent in.. (I have 6 so far.. 3 in my groin and legs). That might hopefully help the circulatory issues.
Quantity vs Quality? I suspect that's a choice my oncologist will leave to me after presenting me with the facts. I'll be 78 in June - how many years are remaining? My family tends to be long-lived, even with cancer and other issues running through it. Could be another 10 years - so do I want to do 10 years as a cripple or is it worth a chance to try getting my T up where it belongs and risk triggering a recurrence?
Perhaps we should all keep a dose of the clot busting drug at home…
Aspirin, then rush to ER
Chew the aspirin before swallowing - almost all aspirin are coated to pass through the stomach and dissolve in the intestines - far to long to be effective.
Don't buy coated aspirin. The coatings are bad for you.
So is a hole in the stomach lining
That is a fallacy generated by big pharma as they cannot make money from it.
Always have uncoated Bayer 325mg on hand in case of stroke to heart attack.
The hole in stomach is if you take it daily for years,
Yep, i have uncoated in case of emergency. I try to avoid any bayer products because they do so much harm, so i don’t like giving them my money.
I also take Swanson tocotrinal, artichoke extract,d3, Vascepa and a couple other things to help prevent stroke they have been proven to lower the risk.
I do take daily baby aspirin, which is why i take the enteric coating. What damage does the enteric coating do?
Thats awful. Out of all the bad things, strokes are right up there. Nattokinase is definitely something I'd consider. Better to get it from eating natto than supplementation.
One drug with extremely minimal side effects that addresses the stroke risk from PC (possibly effectively) is Warfarin/Coumadin. Many cancer sufferers are not informed of the greater risk of heart attack and stroke because their cancer makes their blood "thicker"(that is, more tending toward blood clots). I've often wondered why blood thinners aren't prescribed regularly as a preventative measure for PC and other cancers. My doctor (and the internet) informed me that warfarin and other blood thinners interact dangerously with many chemodrugs to increase the risks of internal bleeding. However, for me, this raises the question of the comparative merits of the alphabet soup of chemical treatments for cancer versus reducing the risk of lethal events such as stroke and heart attack. Also, Coumadin has several anti-cancer effects in and of itself. Anyway, I'm very sorry for what you're going through - and I have personally chosen blood thinners (after a DVT in my left leg) over the extraordinarily harmful/toxic chemo treatments for PC (which all increase the risk of DVT, heart attacks, and strokes, from my reading while providing minimal benefit in many cases!).
A blood test will tell you if you have "thick" blood. Its called the platelet count, if its normal, DO NOT take Warfarin/Coumadin
Grounding, on a daily basis, helps keep the blood from clumping.
I sorry to hear about your stroke. I hope you can resolve the problem and prevent another one. Daily baby aspirin helps many men, as well.
Yes when my doctor put me on abiraterone he said make sure you follow up with a cardiologist.
I had a very mild stroke ( they called it a pre-stroke) while I was on Lupron. I couldn;t move my entire left side for several hours. Luckily I did make it to the hospital within three hours, and I recuperated back to my baseline. I don;t think doctors encourage you to take this risk seriously enough. These testosterone deprivation drugs come with risk that are very real.
Were you taking anything else? This list of contraindicated drugs for Abiraterone is like a mile long.