I’ve been having a series of heath things that are seriously impinging on my QoL. My PC story - Gleason 9/Stage IV, spread to lymph nodes. EBRT last April. On Orgovyx + Abiraterone/Prednisone.
I just got back from a moderate walk in the neighborhood (like 3.5 miles), something I used to do regularly. I had to stop twice to catch my breath, and found myself drenched in sweat, despite it being like 73°. Coming home I nearly passed out in the shower, having to sit on the toilet afterwards.
My symptoms:
I’ve had increasing shortness of breath, extreme fatigue, dizziness, frequent urination, immediate sweats and weakness/dizziness after getting up to urinate, lower back pain, and occasional chest pain.
I feel like I’ve been in a whirlwind of medical appointments, with little results. Cardiologist says I have weird heartbeat and wants me to do yet another test. Discounts effects of my doublet therapy. I’m at my wits end, trying to get an answer. I think I’m going to try to get a urologist appointment next week because of the urination part of it.
added: 2 negative covid tests. Never had COVID, btw.
I guess I’m throwing this out here to see if anyone else has experienced this, and what it turned out to be. I’m pretty miserable and trying to figure out if it’s the meds? The cancer? Or what.
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Jpburns
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Your symptoms seem like the latest covid to me which me and my husband have had - we are currently experiencing a " long covid" episode of the latest strain which is called FLIRT
the dizziness was a bit alarming until I realised what it was
I'm over 2 years in similar situations and therapies (but no radiation). It's very hard to remember but I was somewhat out of shape when, about 6 months after diagnosis and start of therapy, I started to exercise more and more.
At the beginning it was astonishing how few push-ups I could do or how far I could walk or sprint. (At one point I was able to do 25 push-ups.)
I also learned I was borderline on sugar control, otherwise known as metabolic syndrome. In such a situation if I would overexert and get sweaty and super exhausted and almost nauseous. (This is not a good symptom related to heart health, from what I've heard.) Exercise is good for that too. I have a vague memory of similar symptoms as yourself after pushing my body.
So I worked on sugar control and about upping my volume of exercise. I'm okay now except for a low level of fatigue. Zero testosterone and zero estrogen will do that I guess. Successful PCa therapy here depends on, and puts your body in the state of, being seriously out-of-whack!
Your situation maybe completely different than what I am describing. But I figure it's better to at least have some kind of a reply.
Well, he just requested another test. I’m getting a CT Angio Heart w 3D Imaging/Function… in about a month. No obvious blockages, but weird irregular heartbeats.
There are two heart systems they have to check out and separate specialists for each- electricians and plumbers.
The Zio patch will track your heartbeats for 2 weeks - the electrical system. If they are irregular, your cardiologist may want to put you on a blood thinner. Irregular heartbeats cause blood to clot, and those clots can cause strokes and pulmonary embolisms. Thus, the blood thinners.
An echocardiogram (a Doppler sonogram) examines the plumbing. If the blood flow is blocked, you may require a stent to keep the blood vessels open. The CT looks for plaques that may become dislodged and cause heart blockage later. Statins stabilize the plaques so they don't get dislodged. 3D imaging can detect problems in the apparatus like valves and such.
Weird heartbeat sounds a bit off the cuff to me, is the test gonna be wearing a heart monitor for a period of time usually 24 hr minimum or stress test or something else.I have paroxysmal afib controlled with a beta blocker and I have very few symptoms even after more than 4 yrs, no triggers even hard exercise is OK.
Some of your symptoms aren't typical afib but there's a number of arrythmias, hopefully if it's cardio the specialist can pin it down.
How's your blood pressure, has it increased, it's one of of the more common SEs associated with some hormone therapy and may be a precursor for cardiac issues
Please dont read much into the automated interpretations from the machine, I did the same mistake once but the cardiologist ignored it completely and said nothing unusual, wait for the cardiologist to actually diagnose it, out here in India experienced cardiologists do not take these interpretations very seriously so no need to get too worried based on these
you sound like me prior to getting my pacemaker. Always active and athletic but suddenly couldn’t walk 9 holes of golf. Walked off the course on hole 3 cause I suddenly couldn't catch my breath. 3 weeks later got a pacemaker and now much better. FYI, I’m also on AA, prednisone, and lupron. Keep up the walking and great to see you added weight training. Critical! Good work and good luck!
By all means pursue answers through your various doctors. At the same time, pursue greater cardiovascular fitness and increase your strength training.
Of course doing this safely is obviously a priority. However, always keep in mind this ugly truth: Altgough they are very effective drugs, the Orgovyx and the abiraterone are aging accelerators, working tirelessly to impair your function, decreasing your aerobic capacity, VO2 max, strength, endurance, everything. BP tends to be higher from both drugs, especially the Zytiga/prednisone. Insulin resistance, CV issues, cognitive decline, slowed metabolism-the list is long.
If you’re willing, add to your routines a thorough tracking of progress. Know all your numbers. Get a dexa scan periodically. Don’t wait for a doctor to order one. Know your resting heart rate, your lipid panel, fasting glucose, A1C, all of it.
Learn about VO2 max and how critical it is to work on thar specifically. Once a week is fine for that, but if course your walks also need to be of sufficient volume and pace to place your heart in the desired range. They cycle and generate your mitochondria. Walk longer and faster if you can. Carrying even a light pack or walking in nature on uneven terrain changes walks for the better. A simple heart rate monitor is very helpful for tracking.
Similarly, get a trainer if can at all afford one. A trainer means more efficient and effective weight training. Most who weight train work out for too long for how little they actually get done. . I don’t use a trainer, but admittedly I know how to train hard and track my progress. It’s one of my few consistently good habits in life.
Your diet matters (less food, little sugar and limited carbohydrates in general), but the exercise matters more. We need to use these 2 metrics of strength and conditioning in a much more deliberate manner if we want to age well. This is true regardless of the absence or presence of disease and its treatments.
My time on ADT and Zytiga felt like swimming upstream the whole way. I lost some strength and even more VO 2 max and endurance, and this was with diligent effort. It takes a lot of hard work to thrive on these drugs, and very few of us even do it at all.
It’s not for everyone, but it literally makes all the difference. Again, all in the context of getting your basic health sorted as well as possible first, while keeping in mind doctors mostly do not talk about this to their patients except in the vaguest of terms. Great luck to you!
Really agree with your reply. I think doctors do a poor job of educating this area because they are usually doing a poor job of maintaining their own health. It is hard to tell people to exercise and lose weight when you have a beer belly and are a couch potato. The data on the benefits of exercise in preventing cancer, heart disease and dementia is overwhelming yet….
I’m very impressed with your thoroughness and hard work. I don’t think I can be as good as you, but I’m trying.
I come from a pretty sedentary background - spent a large portion of my life sitting in front of a computer making computer graphics (“motion design”). I was lucky in that I was tall and never really fat - this new belly fat on ADT is annoying . I would always walk everywhere (2 miles daily normally, 6-11 on vacation) and have continued that up to this point. I walk at a good clip. My resting heatbeat is around 60, and my walking used to be like 110-20, but that’s spiking higher lately.
I’m doing exercise at the local “Crunch” gym every other day, alternating with walking. The only aerobic stuff I do is 5 minutes on a rower to start, but then it’s mostly all resistance machines, as I can see my arms and legs have visibly “melted” with adt. Usually do about 40 minutes of that. I find things like treadmills totally boring, and at least the machines are interesting
I guess my point is that while I think it’s good (and probably better for your health) to work out as seriously as you, I’m just never going to do that. But doing what I’m doing is a huge change from before, so I hope it’s helping me. I certainly feel more virtuous doing it, as opposed to not.
Agree with everyone here that doctors should prescribe exercise with any form of adt. It’s weird that they don’t, as it’s a much better approach.
I am sure they have checked your blood glucose/sugar with all of your tests but I would do so if they haven't. The frequent urination and fatigue can be a sign of diabetes, one of the more serious side effects of ADT.
Sounds similar to my issues last fall - shortness of breath on minor exertion, heavy exertion caused my heart rate to FALL, then rocket up. Passed out a couple of times. Cardiologist was unable to pinpoint cause, even after a treadmill stress test that had to be stopped due to heart problems showing. I then went to an Electrophysiologist (cardiac electrical signal specialist) who immediately said "you need a pacemaker". Had one installed in February, and after a few minor tweaks, I'm back to full speed, with no restrictions.
I definitely recommend consulting an Electrophysiologist - they are the best resource.
I had occasional incidents of irregular heartbeat and in December of '23 I was prescribed and wore a Holter monitor which is a wearable device on the chest which detects heartbeat, rhythm and other items. I return it to the maker who distributes the data to the cardiologist and then he met with me. The result was the monitor detected a minor issue but not sufficient for further investigation or treatment. The monitor was fiddly to prepare and attach but eventually I succeeded.
You can get an RNA test which is more reliable for Covid. I don't know if there is a test for long Covid but I expect your doctors already thought about that; if not, they should.
There could be something else going on as well but I can suggest nothing but hang in there, be as positive as you can, and listen to the doctors.
Jpburn, you've had some great comments on your post. I can't add any advice to that already offered, but I can say that I'm having similar experiences. As far as I can tell, everyone fighting PCa is going through the same issues at varying degrees. I have four more RT sessions left in my 28-hit regimen. If I can still pee afterward, I'll consider myself lucky. My RO has recommended doubling my dosage of tamsulosin (Flomax) and adding 400 mg of Ibuprofen to the mix. In addition, I'm also on Orgovyx and now BP meds (Lotrel, which has been a godsend after my BP experiences).
Last week, I met with a new MO assigned to me (my last one was a roaming MO out of Chico, CA, who retired, apparently). He wants me to start Abiraterone+prednisone ASAP as part of a doublet therapy with Orgovyx because I'm node positive. (N1M0) The MO I met with at Fred Hutch noted this in his notes from last Nov. This SOC comes out of the Stampede study which saw some improvement in OS when combined with Orgovyx. First, I'm supposed to see my dentist so he can verify that my jawbone is strong enough to endure the drugs. (Say what?) Also, he wants me to see my general practitioner for how to treat the osteoporosis detected in my right pelvis--the results of my DEXA scan from two weeks ago. I nodded in silent agreement to the "Abi" and by the time I got home from RT, I had two prescriptions for nausea waiting at my Rx, part of the Abi regimen. Somewhere in the conversation, I remember him wanting me to get the dental approval ASAP so I can start the Abi so he can check me for SEs before he moves to Nebraska in Dec. Then, I read your post.
I spoke to my RO who is noncommittal about the Abi. In the Stampede study, Abi is characterized as something that "can" be added to ADT. My RO showed me that the addition of Abi to ADT in a 2 year regimen, post RT, improved 6 year metastasis free survival from 69% to 82%. That's almost a 20% improvement. With that, I've decided to add the Abi to my regimen. If I develop SEs like yours, I'll certainlyy post about it. Now, I need to find a more permanent MO.
I seem to remember 30% improvement mentioned regarding STAMPEDE, but don’t have any link to cite.
That jaw thing is weird. I was never checked for that.
I hope your experience is better than mine. I’m sticking with it, but feel really beat up by it (I think the Abiraterone…). But maybe I’m a whiny little baby (a definite possibility).
My biggest recommendation is to start exercising and make it a habit. I think it really helps. Good luck.
As I mentioned before......... I think you and and I are the original Corsican brothers. You have it and I've got it............. Just saw a Pulmonary specialist week and I don't know if my breathing issues are from smoking 56 years ago or from COPD/Emphysema or Lung Cancer and of course all of the other shit I'm dealing with.....
So hang in there and I'll let you know what's happening with US..
I did not read all of the replys so someone may have suggested this. Please Google curcumin and magnesium for the heart. I had a friend with a similar situation as yours and he started curcumin and the procedure he was to have was no longer needed and he is totally off of bp meds. God bless.
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So what do I do now?
I have what ????????????????
Catheter removal & no urination
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