After taking Xtandi for 2 weeks, I got my monthly Firmagon belly shot. About 8 hours later, around midnight, I woke up shaking violently. I mean I was really out of it. I was nauseous, diaphoretic, and had a migraine headache. (Sounds like Roseanna Rosanadanna) but for real. I was ready to call the paramedics, when it started to ease up. I stopped shaking after about 30 minutes. I took a Sumatriptan for the migraine and that helped some but I had to take another one about 3 hours later. By 6 AM I was pretty much okay but had no sleep. By noon I was completely recovered but the experience scared the hell out of me. I called Humana Specialty Pharmacy where I got the Xtandi, and the pharmacist there said maybe the two drugs worked together to give me a "super" hot flash. They both have that side effect. Anyway, I don't want to go through that every month when I get my Firmagon shot. I see my MO today and will discuss it with him. Good news! I had lab work after 9 days on Xtandi and my PSA is now going down instead of up. Anybody had these 2 drugs do that to them?
Xtandi and Firmagon side effect s - Advanced Prostate...
Xtandi and Firmagon side effect s
Not yet, I mean did not have those two drugs. Not yet but I'm studying and briefing myself on upcoming next 3 months Lupron Depot injection. First things 1st. Next PSA/Testosterone labs in 3 weeks, cant wait. But anxiety is taking over.
My PSA was climbing on Lupron alone, although my testosterone was low, so I have refractory MCRPC. I switched back to Firmagon because my MO said it may have less negative effects on my heart and bones. He added Xtandi as a second line hormone therapy, which appears to be working. Although Lupron and Firmagon work differently, they both lower serum testosterone produced by testicles, but not by the cancer cells. That is what Erleada and Xtandi do, according to my MO. Some men acheive lower PSA levels on Lupron or Firmagon alone. Good luck!
Last time I had those kind of shakes was years ago when I used to have sex.... I miss them....
Good Luck, Good Health and Good Humor.
j-o-h-n Friday 09/27/2019 6:11 PM DST
your shakes would have probably been different had there been more than one person in the room when the shaking started ....
Just say’in
Im on lupron and Xtandi. Never had that happen but the full dose of Xtandi wrecked me. Took me 4 hrs to vacum our modest home. This isnt going to work, i thought. Cut Xtandi dose in half and i can tolerate the side effects. As of 6 months ago i was undetectable on this dose. Next psa ck in 2 weeks.
What side effects do you get?
Fatigue, sore joints, no drive, depression........ I've had them all over the years.
On Lupron , Xtandi ( 4X ) for 11 months now ... wonderful results but about every nasty side effect on the list here. It’s borderline debilitating, almost to the point of needing an electric wheelchair sometimes. Got nearly everything on the webmd side effects list yayahahahaya.
Still worth every bit of the agony to me. I kinda get used to a lot of it over time and the combo dropped my 1400 psa down 1350 points the first month alone. Now entering my 5th consecutive month at undetectable. The enormous fatigue stiff sore lower body , spontaneous hot sweaty flashes, cold chills and debilitating mobility loss are killer tho.
I went into Kaiser today for another Lupron shot and a Zometa infusion and my forehead skin temp was 86.6 in the clinic. Freaked them totally out. Took it three times with that clinical thermometer that they swipe on your forehead. I told them “ no worries “ , I keep my body temp right above Rigamortus because I’m cool man cool.
They had to dig an oral thermometer out of a draw to read my 96.2 actual temp. Lupron- Xtandi seems to mess with my peripheral skin veins. Throw a heavy sweaty hot flash on top of the blood vessel constriction and you have a evaporative cooler going . When they swipe it on your forehead, read it, and start whacking it on the counter / checking the batteries... you know you got ‘em and some fun can ensue. Yayahahahaya
Have a good one brother
Hey, ask your onc to try lowering your dose of Xtandi. I was crippled on full dose miserable at 3 caps and 2 worked for me. Keeping psa undetectable for almost 2 years.
If it happens again when I switch back to Lupron, then I can try lowering the Xtandi dose. Thanks.
I did ask my oncologist about taking half to three quarters of my four pill daily dose ...
Just to get some easing of the withering SEs ....
He looked shocked and said NO .. reminding me of my gigantic high starting psa and how successful the adt has been and my large body mass.. But worse he ratted me out to my wife and she kinda came unglued... now she spies on me when I’m I taking my morning pile of pills 💊 .... yayahahahaya I’m pretty sure she counts them behind my back too. It gets complicated sometimes....
I got this tho .... we got this brother .. no biggie ..
We’re bad to the ( crumbling) bone . 💪💪💪💪k
Had the exact same reaction on Zytiga three times over a period of about 6 months. I had been on the Zytiga/Firmagon treatment for several years when the violent chills occurred. Switched to Lupron and chills stopped
So sorry for the very late reply but I do not monitor the HealthUnlocked site as often as I should. I am no longer on Firmagon but i did not have any ill effects from the shots I did get. My doctor suggested changing to Lupron so that's what I did and am still getting Lupron shots every 4 months. I get my PSA checked once per month and it has remained low to date. I am scheduled a visit with my oncologist's PA on 11/15/2019 and with the blood test they do, they will include a PSA as well. With low T comes low energy so I tire out easily sometimes but try to keep going anyway until I can do it no longer, then take a nap to get my batteries recharged. Also, I unfortunately acquired a case of lymphedema which is no fun but I did do therapy for it and now I have a lymphedema therapy pump from Tactile Medical. Too early to access the results of use but the lymphedema seems to be improving. I also went to see my favorite orthopedic surgeon to get another prescription for therapy for my back & left side leg pain & I am undergoing that therapy now which seems to help with flexibility & strength. I really hope you are doing ok & wish you the best in dealing with this awful malady. I did not wind up with PCa because of lack of preventative maintenance for me, I wound up with it because of my urologist who dropped the ball & did not do his job & that is a fact. I suggest now that if a man's PSA goes over 4.0 to get a prostate biopsy asap. Men are afraid of it but I find a colonoscopy was worse & I had them every 3 years. My PSA before diagnosis was steadily climbing yet my urologist attributed it to old age. I should have paid more attention but trusted this doctor who dropped the ball on me.
As an additional follow up, my PSA was done on my last visit to my oncologist. The results are as follows: Prostate Specific Antigen, Total (YH) <0.008 ng/mL
This assay is performed on the Beckman platform using Hybritech standards.
So the Lupron injections seem to be still working.
.008 is fantastic !
Xpbdb
I sure have experienced the shaking side effect although mine started when I switched from Lucrin to Firmagon well before I started Xtandi about a year or so later. The shaking was so severe it was scary, particularly all the added SES that your described. I first called the advisory
Nurse at the Firmagon suppliers her in Australia and she had no record of that side effect at all at that time. Each month it hit and try as I might I could not find any advice from my oncologist. I was taking micardis for BP and a beta blocker also as a heart rate stabiliser, plus a diuretic to reduce edema in my feet and lower legs. My oncologist had nothing practical to offer but my GP
listened carefully and told me to drop drop the micardis, the beta blocker and diuretic on the day before the injection, and start them all again two or three days after
the day of the injection. She said that my problem was that the heavy shaking and sweating were classical symptoms of shock and low blood pressure. She added that I should take 2 panadols on the evening before and two again about an hour before the injection the following day and the one on in the early evening. ( I normally have the injection at about 11:30am.
And then more panadol the next day as required.
It was like magic. From the first injection after the advice there was effectively no sign of shaking at all. When I was started on Xtandi because my PSA was starting to rise slowly. The Xtandi didn't seem to have any effect on the SES for a few weeks but my PSA improved dramatically and my latest PSA is .04. No shaking but a definite increase in fatigue every afternoon. I sought a second opinion on the high dosage of Xtandi ( 160 mg once a day) and I was advised to reduce the dosage from 4 capsules to three per day and after about four weeks and a blood test confirm all is well, the reduce the dosage by another capsule to 80mg a day. I have been on that lower dosage for a few months and all is well. I am happy to report. I was also advised by my second opinion , that
he would normally advise starting with the lower dose of Xtandi and increasing it if it becomes wise to do so.
This report is given freely by a person who is not a doctor so please refer to your own medical team. For me it was extremely useful to have a path to second opinions, though I continue comfortably consult with my original medicos.
Hope this might assist you.
Cammicro
Thank you for your input. Sounds like you have a very smart doctor. I only had the violent reaction that one time. It is still a mystery to me. Congrats on the low PSA! Mine has been creeping up every month. Last one 0.39. Been on Lupron and Xtandi now for 10 months. The fatigue is the worst thing I have now. Not sure what my oncologist has planned for me when the Xtandi fails, as the cancer outsmarts it. Just living one day at a time and enjoying my grandchildren now. No one gets off this planet alive😉✌️
My guess is that it’s a reaction to the xtandi
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