I have been on Firmagon since last June. @ 2 weeks ago I starting getting winded by minor exertions. My heart also would race and pound. That is not my normal. I had an EKG that seemed to point to PE. All tests for PE came back negative. I am just finishing 48 hours on a Holter monitor. I hope they can figure this out. I am trying to get regular exercise and this is making that difficult.
Is there anyone here who had either c... - Advanced Prostate...
Is there anyone here who had either cardiac or pulmonary issues after being on ADT for most of a year?
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Pianodude
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Yep .... I’m on Lupron Xtandi Zometa , 31 months now. Somewhere in the neighborhood of 8-14 months on, I started to develop random ectopic heart beats and my qrs train went from sharp and well defined to kinda garbage looking. I’m told these are quite common with adt and usually not particularly harmful. I also have a minor bundle branch block now but I’m told it’s not significant as well. Still .... I like to keep an eye on my cardiac activity for degradation , so I bought one of those fairly affordable “ Kardia “ home ekg devices that works to ( Bluetooth) an app on your smartphone. The app analyzes your ekg train with algorithms for all common heart malfunctions. Plus you can pay a fee for a more in-depth glance by a cardiologist if you want more. These devices work surprisingly well and can give you early warnings you might not expect.
When I run a Kardia run on myself, one out of three ..... sometimes two out of three times .... it says I’m fine ( never mind the obvious ectopic beats and garbage waveform ) , one or two out of three it says it finds something abnormal that doesn’t fit the algorithms of the usual cardiac malfunctions. Actually it’s the ectopic beats. All this pretty much in mostly perfect agreement with what my medical team says.
Just my experience and my methodology .. your experience may vary. Kardia, like a glucose tester and blood pressure machine is great to have around with APCa. A no brainer IMHO.
As always , run everything you do past your medical support team, you are trusting them with your life, , keep them informed.
💪💪💪😁😁😁❤️❤️❤️
FYI: speaking of minor exertion.. exhausted..heart pounding , I’m one of the adt zombies... full bore pedal to the metal. That and I’ve given you the synopsis, many details can and do come into play with this topic that complicates things considerably. But generally this has been my experience.
I want to get back to at least somewhat vigorous exercise. I am trying to keep my bones challenged and strong through exercise and supplements. The thought of going on Zometa or one of the other bone-strengthening treatments with all of the possible negative side effects turns me off. I appreciate you weighing in on this Kaliber!
Many here say exercise is the best way to go if you are able. You should speak to your docs about the need for bone density scans, if you are on adt. You “ do not “ want to “ assume “ exercise will be effective alone, and making this mistake could have you end up with broken or fractured bones that you want to avoid. I’ve had over 30 infusions of Zometa, I got another yesterday ... I call the infusions “ the Zometa pain train “ yayahahahaya. I get bone pain and muscle stiffness side effects that are challenging to endure. STILL, if you are on long term adt, the value of bone strengthening drugs like Zometa cannot be over emphasized. They are very important.... so much so to me that I don’t care about the brutal side effects at all. I’ve seen the ugly spinal collapse and stainless steel brace surgery, femur fractures etc. .... up close and personal in a personal close friend with APCa. Every effort should be made to avoid those consequences if you possibly can. Probably exercise can help a lot, but it’s not a good idea to assume it helps you , .... best to get your bones checked out medically.
Good points. The one that scares me is the osteonecrosis of the jaw.
Also consider low-dose estrogen patch, for bone density...
That one is easy .. if you do a bone strengthener .... forget about ever doing anything involved with your mouth. If you leave the bones alone .... no dental treatments, surgeries etc. .... you’ll probably be just fine. Most people don’t have mandible issues ... but it happens. My friend with the spinal bone crushes also “ stupidly “ had a dental procedure during bone strength treatments and got a horrible case of necrosis in his mandible. Had another stainless steel repair there too. A significant piece of the left side of his mandible disintegrated ... crumbled to bits. The pain involved with that is horrendous ... and he had to eat with a straw for a while, and I think I remember he got a stomach feeding tube too.
It took about 6-7 months to finally get it fixed. I haven’t had issues and I’m a long term Zometa user .
Thank you for the information. I will take all of this into consideration.
What makes you a piano dude? I am "into" pianos myself. I was lucky that Santa brought me an e-assist bike last xmas. I have a very steep driveway and my minimal exercise was to get the mail which is a 3 mile round trip with serious grades adding more rides and greater distances when I had the time. Before ADT I could do it on my fancy hand made light weight mountain bike. Now I need the e-bike. Initially I could ride it all the way to the top in the lowest assist setting. Now i need intermediate. I need to force myself but my dog is also getting a run out of it. I am hoping that i do not need to "graduate" to high assist level. At that point you are not doing a lot. We hope to do some traveling in our new camping trailer and do as much biking as we can manage. At least in places other than home we can find relatively flat places to ride. I do need to force myself to get on the bike but once I do it is easier to get exercise than walking. One friend thought i was nuts to keep riding a bike. I would rather die falling off my bike than get fatter and lazier by not doing anything.
I am a lifelong jazz pianist.
I never learned to play because I had lessons with my sister who progressed at mach speed while i got more and more behind and finally gave up. So now I have a player piano. The piano was offered to me just before ADT and I knew that I would not be able to install the player mechanism after a while on ADT. Of course I could use jacks etc and probably would have. Anyway I have the equivalent of a Steinway Spirio (it is actually the predecessor called LX) in a 9 ft Knabe in pretty good condition. It really helps me to relax and get a little sleep after listening for hours. I am glad I did this while I still could.
Good plan! E-bikes are wonderful. Enjoy your camping and riding. See you out there
Only 1/2 of 1% get ONJ. Less if you get and keep up you dental maintenance and care. Risks of not doing it ("skeletal related events") is much higher if you have APC. It will be coming for us so I prefer to get out in front of it. Might also protect from new bone mets by altering bone micro-environment. I started alendronate when first BCR. Then switched to Prolia for 5 years now. Low dose estradiol patch with ADT.
Amazing. In all the years That I did ADT I was never offered this or had a discussion with the urologist. Saw Oncologist for several years ( two of them, one at a big time cancer hospital ) and no mention. Two months ago finally the Onco did a bone scan and yep score is -3. Gave me an injection to boost bone density and plans to do it again next month. Most be a conspiracy.
Sounds like you’ll need a bunch of those injections and keep the gorilla duct tape and popsicle sticks handy. Doncha just hate it when you reach for a hot dog at the ball park and your arm falls off .. i know I do yayahahahaya. This whole mess often seems like putting one band-Aid over another. I just got to keep my eye on the prize, which in my case, is a little more time with the wifey. Boy, I t doesn’t come cheap or easy does it.
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Yes, every day we wake up and claim the best prize! 💕
Absolutely, besides if I croak the “ hammer “ ( wifey ) will kick my glutes. She’s “ extremely “ fond of saying “ it’s better than the alternative “ ... I suspect she may be speaking of kicking my glutes more than croaking yayahahahaya not sure ...
❤️❤️mb
Have you ever figured out a scheme to skip some of the side effects from Zometa?
Everybody experiences Zometa differently I suspect.
This is my personal experience, yours may vary considerably.
Zometa requires monthly blood work .... this to make sure your liver and kidneys and platelets can tolerate it ... and haven’t been damaged by previous infusions or other things. Your medical team will prescribe those for you. No more than 3-5 days before each infusion.
Zometa will cause mandible necrosis .... make sure you have zero dental or anything done to your mouth for about five weeks before and same after the infusion. Your jaw can become infected and bone crumble.
Before the infusion, buy and take a OTC flu medication.... I use chlorpheniramine. Zometa flu can be very unpleasant.
Load up on your pain meds before the infusion to get out ahead of the bone pain. Out ahead is far more manageable than playing pain catch-up.
Buy a few bottles of those sports drinks that brag about replacing electrolytes on the label. I like grape flavor myself. Start drinking those immediately after leaving the infusion clinic. They make you urinate profusely, which washes the Zometa out of your organs reducing the amount of time Zometa is in there doing damage.
Not everyone gets all the following I’m just lucky I guess. After 32 infusions, these diminish considerably for me, but I still get my glutes kicked .
Thorax bone and muscle pain .... it can be so intense you can’t reasonably breathe without excruciating pain. This may trigger a “ not able to breathe “ panic attack as well.
Pain meds again of course and I buy those cans of sports oxygen off Amazon to inhale to up my pco2 plus it seems to calm you down and reassure you, reducing the panic attack quickly. Xanax is very helpful here too.
Wake in the middle of the night with bone rattling chills and shakes. Omg Bone pain. Jumping into a hot jacuzzi, hot bathtub full or hot shower fixes this quickly. Jacuzzi the best. Pain meds , xanax if needed.
Basic light to moderate bone pain and VERY stiff tender painful back and leg large muscles... just like zombie adt. This and Zometa flu are the base experience with Zometa. Pain meds and just “ toughing “ it out, same as adt zombie .... hot flashes, sweating profusely and light fever may happen too.
In my case this lasts for between 5-8 days in various forms. Interestingly it stops like flipping a light switch. You are very uncomfortable and suddenly it’s over. I know people that have far different length of time and patterns this effects them. One guy gets light symptoms for a few days and they quit then two weeks later they hit again but less severe.
Worth noting is the mental aspect I experience. Zometa creeps up on my brain nearly imperceptibly ...... you are having strong mental issues .... not fitting into your environment properly, negative energy, yuck yuck yuck, stuff like that ... then.... the light switch flips and it’s like a new wonderful bright sunny new day and life that washes over you. Beautiful world .. You didn’t realize how bad it is until its suddenly gone. I rather like this Zometa experience because it refreshes my appreciation for being alive. Yayahahahaya
Hope some of this is useful💪💪💪🌼🥳🌻🦋🌈
Excellent response
Many thanks. I have an infusion in 3 weeks. Last 2 knocked me on my butt
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$89 for the cheapest Kardia. My money or my life? I'm thinking.
in reply to monte1111
My money is on your 💰
If you are the hypochondriac type , then ... this gives you a whole additional way to angst. You can go to our ekg clinic free whenever you want. No need for a referral, like our eye clinic. This stupid thing comes in two flavors......
I just tested myself , ran three passes ..All were green. All’s well in Smallville tonight. Or ....you just tested yourself three times in a row and two comeback “ something wrong “ but it’s nothing known in its medical A.I. arrhythmia library. Then what yayahahahaya.
Its kewl if you have the money burning a hole in your pocket, but sometimes ignorance is bliss yayahahahaya 😂😂😂😂😂
I am very blissful. Dr. don't tell me s***.
in reply to Kaliber
Does that model require sensors on the testicles?
Kaliber in reply to
Of course not silly .... it’s the PCa model , we don’t have those. .......It’s rectal ..... just the batteries of course. You are such a great comedy straight man. TT4 😂😂😂😂😂
in reply to Kaliber
j-o-h-n used 6 of that model...all at once.
Kaliber in reply to
Yea and he had to wrap about half pound duct around them too , to keep them up there. ( Darryl gonna make this disappear yayahahahaya)
😂😂😂😂😂❤️❤️❤️
in reply to Kaliber
That last zometa shot must not have been too bad...you haven't lost a single day
Kaliber in reply to
This has been a light one so far .. ... prolly gonna be one of those time delay ones. Pretty debilitated this morning , just sleeping and kinda sick most of today .... prolly gonna hit me hard tomorrow afternoon or evening. Those only last about 24-36 hours with the ugly stuff. Ears beginning to ring pretty good tho , might get busy here later yayahahahaya yayahahahaya. Never got away clean on one yet .
DarrylPartner
You'll learn a lot from watching this: youtu.be/BnTqHEFmEw4
Very informative. I wore a Holter monitor the last couple of days. The results won't be available for up to 2 weeks. I think I need to get a referral to a cardiologist.
Sorry for your troubles. I’ll give my standard line, since I don’t see it specifically n these very informative replies...
Great advice to get you numbers, get your machines. Watch everything. Stay off the drugs if you can.
You need regular bone scans or you won’t know if you can stay off the drugs or not.!
Agree with Kaliber you REALLY don’t want breaks or fractures especially at our age. However, plenty of exercise is the best answer to all of these ADT issues and we need to clear the path of any interference.
Clear that path! Get your numbers, re establish a baseline. You don’t say what condition you’re in, only that you’re ‘trying to get regular exercise.
Are you fat? What are you eating? Are you eating less? Crucial.
A dexa scan will of course tell you your bone density but also your fat numbers, lean mass etc. Blood pressure, glucose, resting heart rate, time to heart rate recovery after exercise-all important.
Get a heart rate monitor and learn how to use it-never talked about enough. You can increase your fitness much more safely and effectively with one.
While on ADT need FAR more exercise than we’ve been doing, both cardio and resistance training. Most of us are not getting nearly enough to push back effectively against these drugs.
I don’t suggest you do anything unsafe. A lot of people worry about harming themselves exercising. This is mostly unnecessary. Get yourself thoroughly checked and then GET ON IT. I’d say ‘get back on it’ but I don’t what you actually do.
Again, to thrive on ADT we must overcompensate. It’s tough, because even with what was previously enough exercise we get tired and easily discouraged by what happens to body and mind.
ADT ages us in the sense that the collection of maladies known as metabolic syndrome get moved up, so to speak. Thus we’re forced to deal with them sooner.
Every one of ADT’s side effects, including cardiovascular issues, can be minimized, held at bay, or eliminated outright with exercise....likely a good deal more-and more intense-than you’re accustomed to.
If I’m wrong then great, keep it up!
Yes to that. A stress-echo (heart ultrasound on a treadmill) will likely reveal what is or is not going on with your heart. We only have one. (Unless you are Dick Cheney.)
That last was a joke BTW. 😆
I rather enjoyed it!
Yes, I had to stop ADT because of a variety of heart related problems it caused
I was on ADT 2008-2011.
Experienced a SCA sudden cardiac arrest May 12,2011. Related to my Bicalutimide and Lupron inj’s for 3 years?
Partially…
Scary
My BP has gone up to the HYPERTENSION 1 stage one over 3 years so I sent the figures in to my GP, every time my oncologist takes the reading they panic. Some is white coat effect but was getting slight headaches and out of breath once in awhile. He finally gave me a script for blood pressure medicine, I have asked before but since I will be 70 he always said do not worry until it goes above 140, that it increases with age which is true but with the ADT it has a raising effect. Been on it a week and it is lower but it takes 2 weeks or more to have the full effect known, again I had to be proactive and do the foot work to get the medicine. I took the home unit with me and compared it with the machine at the local drug store and found it was a difference of 13 points higher and it will not pare with my smartphone. So now getting a watch that measures your blood pressure and heartbeat and will compare that to the machine as well at the office unit, also keeps track of your steps. I do walk about anywhere from an additional 8 to 12 miles a week plus your normal day to day walking. So we will wait and see if this lowers the BP, the medicine can be raised if necessary but do not want to be lightheaded or dizzy and fall as I am active and still work part time.
Keep on truckin'. Walking is great, especially in nature. 10,000 steps a day is a good way to establish the habit. The home BP units such as the wrist ones, are problematic in their variability. But when they show good numbers you can accept that. If they show abnormal high -then get it rechecked. Once you are stabilized on BP med(s) that are working you can relax with less frequent monitoring (IMO). 🏃♂️
👏👏👏
I suggest working up to walking at least twice that much if it’s all you’re doing. Not counting the ‘normal day to day walking’.
Has anyone had experience with Orgovyx (Relugolix) in place of Lupron injections? I've read that this new oral drug has 54% less adverse cardiac events associated with it as compared to Lupron and Eligard. Thinking of switching over to it… A little more complex to have to apply for financial assistance etc. to afford it but may be worth it in the long run?.... been on Lupron and bicalutamide for only five months and already experiencing what is for me extreme shortness of breath. Never had any lung or cardiac issues in my life always extremely athletic and very active. ....getting an EKG and chest scans to rule out interstitial lung disease brought on by these drugs.
Has anyone had experience with ORGOVYX (Relugolix)? I've read that it has 54% lower adverse cardiac events associated with it as compared to Lupron or Eligard.I like the idea of an oral drug taken daily as opposed to a periodic injection ....it is a little harder to get a hold of because it's new.
I have extreme shortness of breath after being on Lupron and bicalutamide for only five months, and so I am considering switching over to this drug on the count of its better cardiac safety margins.
Always have been very athletic and do a lot of exercising and never have had any cardiac or lung issuesuntil now.
Speaking of heart...
*** To listen to this video click on the name on top of the video ***
youtube.com/watch?v=BzBxopu...
Good Luck, Good Health and Good Humor.
j-o-h-n Thursday 05/13/2021 10:57 PM DST
I discontinued orgovyx after severe chest pain and arrythmia. And lowered my Zytiga dose to 250mg. It has helped.4673
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