Approaching my 1 year date of treatment. Followed the Peace-1 trial Lupron (3 month injection) + 250mg Abiraterone/ 10mg Prednisone + 6 cycles Docetaxel + Xgeva 28 days/ adjusted to 90 days
I adopte the Mediterranean diet and have used Pickleball (4.5 player) to exercise 6 days per week. Used dumbbells evenings. Current PSA .09
For past 3 weeks, I have noticed that I am experiencing what I believe are more severe side effects. Today, for the first time, I had to drop out of a Pickleball match because of how bad I was feeling. Took a Covid test which was negative.
The severe SEs include: shortness of breath (I have to walk-up 4 flights of stairs to the PB courts. Today, I was so short of breath I couldn’t greet a friend at the top). Back spasms at tailbone (I have a met at L1). I cannot move when spasms hit. Blurry vision. Those were new SEs today
Recurring: feel like BP is plunging and I will Pass out. Urine has turned dark. The fatigue is overwhelming. Lost 6 pounds over holiday.
Like every warrior here, I am accustom to feeling shitty, not sleeping, and eating green stuff. But, this last couple of weeks is different. I meet with MO shortly and want to come with solutions. Anyone want to take a guess what’s causing the SEs to change so rapidly?
Btw: I had the SEs before I ate the Turkey!
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TMcgee
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Sounds like you have some of the classic symptoms of dehydration: dark urine & low blood pressure. If you are playing a court sport 6 times a week you will need to hydrate way more than normal. Also adding an electrolyte mix to water is important if you are sweating a lot. Muscle spasms and cramps can be caused by lack of electrolytes. I would greatly increase water/electrolyte intake and see how I felt after a week or two.
Thanks for response! I have followed the same regimen for hydration since starting Pickleball. I don’t use alcohol, caffeine or other drinks that would contribute. Also, it doesn’t “feel” like dehydration.
I thought thatI would have to change my schedule during chemo; but, I didn’t run into any significant problems. I have electrolyte packets and will test to see if they help.
I had significant challenges with my ALT numbers during chemo. My MO ordered an ABI vacation and told me to stop Tylenol. It was the catalyst for my decision to reduce Abi from 1000mg to 250mg with food.
As I wrote earlier, I’m going to test increasing my electrolytes/water; but I don’t believe the issue is dehydration. Thanks!
Electrolytes, minerals eh maybe. I would hydrate much more and see what happens. Not ‘feeling’ dehydrated means nothing.
Try to train a bit more to earn your pickleball too. More and/or heavier weights, HIIT, zone 2 etc. Sports are great, but the old adage ‘exercise to play sports, don’t play sports to exercise’ is a good one. Great luck to you!
Test for everything, know your numbers. Lots of good advice here on that.
As for the training. I do understand! I know I tend to advise ‘just do X’ as if it’s easily done, but of course it’s crazy hard.
As we know, it’s a daunting task to be fit and strong when we’re old as it is-the treatments for this disease (specifically T suppression of course) only make it harder. But it’s really the only way to thrive on ADT.
Your profile says you’re worried about stressing your bones with pickleball. Long live your ability to play your beloved sport! Train those legs with weights and other lower have weight bearing, plyometrics, balance work etc if you can find the time and discipline. Even one session a week of this type is elixir for the bones.
And of course you’ll be quicker and more rangy on the court😀
Ok, you got me at “quicker and more rangy” on the court. lol
I used biking to work my legs. I liv 7.8m from the courts and during the spring and summer, I bike to play. But, this last August, I got disoriented on my bike. I made a wrong turn on a trail that I ride daily and decided that I needed to stop riding. Freaked me out!
In a short-time, I feel like I’ve gone from a very young 73 year old to an old 80 year old. It isn’t true, I’m very active. But, PC is taking its toll.
You hang in there, and expect more of the same. Last week I put the milk in the cupboard and the cereal in the refrigerator-on different days. Most of this is harmless. Forgive yourself for lapses, they’re entirely normal. Doing one thing at a time really helps me.
And definitely get lost on the bike! It’s therapeutic, and you get fresh scenery and a longer workout that way.
No, I haven’t tracked it. I asked my MO about it and he asked me what I wanted to accomplish. I don’t have any answers. I have all of the SE’s associated with low T, but what should my response to MO be?
I am missing out on a number of baselines. I didn’t have a prostrate biopsy, no idea what my Gleason might be. I had a bone scan; but no pet scan.
During my 2nd cycle of chemo, I had to have a CT and Mets that weren’t on my bone scan were found. MO believes they formed after bone scan, but before therapies began. Lot of speculation.
I had to quit pickleball games( only played a few times a week) in the middle last summer. Blamed it on the heat. Had to grab my wife's shoulder while walking because I was woozy. Blamed on the heat. I rappelled a 16 story building for a cancer fundraiser. Almost passed out at the bottom. Blamed on fear factor and yes, it was hot. 3 weeks later I flunked a cardio stress test. Found I had pre ventricular contractions. Cardiac cath found a peripheral artery 50-60% blocked. Been on a beta blocker and baby aspirin since. No problems for a year. And since I rappelled the building, played pickleball and did elliptical as well as biking I never suspected any cardio issues. Oh, we're also not getting younger. Worth checking out. Best of luck.
I’ve learned to understand that the toxic chemicals that we elect to place in our bodies to fight cancer is not ideal for the optimal function of our organs especially for our kidneys and liver and most importantly our heart. The issues you’ve stated I experienced excluding pickleball but strong activity working on our property outside in the heat. I personally can confirm a better QOL and organ functioning by a short period of vacation from the toxic therapies. Going back on the toxic train and it all comes back like clock work. There’s not currently a better path to follow that I can see in the medical path we take. My doctors have all encouraged me to keep active but have a close relationship with a cardiologist because of the therapies of the medications.
I expected more responses related to the therapies, but you’re the first. I have not considered a vacation. When I ended the 6 cycles of Docetaxel, I wanted to know what’s next. I feel like I have to battle this monster every minute of every day. Maybe, I need to recalibrate. Living longer without quality isn’t worth it. Thanks!
You are welcome. Personally I know I have cancer and then I know when my body isn’t functioning correctly, The low grade fevers, the bloating, the dark urine, the irregular heartbeats, shortness of breath a mental state that is on life support. That all stops on a vacation.
I’m no doctor but I know my body and I know when I feel better. It’s not rocket science. Yes I see my numbers go up, but for me there’s a trade off. I’m living the best life I can with what has been dealt me. What other people do with this disease is their business. For me I’m happy with my decisions. No regrets.
Def agree w moose 🫎 💯 %. I also had se’s that my body just knew weren’t right. I play football 🏈 now on the beach n just couldn’t throw or keep up w the youngsters during the 7 MO’s of adt and decided to try n find an alternative route n research like crazy what May work other than these dreaded drugs. Came across quite a few articles on ivermectin n cbd being repurposed to treat Pca, make a long story short am having excellent results n not only keeping psa at bay but dropping at a continuous rate. I’m not saying it works for everyone but it’s def working for me an quite a few others. It’s a daunting task to stop adt n very stressful but am so glad I did and now can throw the ball 50 yards n almost keep up w the youngsters but most importantly just about every se went away and I feel great thus far. As athletes we can overcome quite a bit but these horrible adt drugs are almost impossible to w the damage they do to the heart liver testosterone etc. Read up on my bio n good luck…
Hi Amigo yikes SE suck..what about relaxing a few days taking a picketball break, walk on the beach with the seagulls.Go some place different with your girl mix it up you’ll feel better it’s almost Christmas already yo ho ho cheers!
I had similar meds as you for 18 months based on consultations with Georgetown U. Oncologist and backed up by oncologists at Dana Farber and Johns Hopkins. (I always looked for second and third opinions.). I Play pickleball 6 days a week because life is not worth living without it. 6 months ago I started on a vacation from the drugs with acquiesce of oncologists a few months after my PSA went to undetectable. Side effects of the drugs are much reduced but I still have some shortness of breath in a hard pickleball game. My PSA is rising and now at 1.5. Testosterone is also up a good bit. But My CT and bone scans show no Mets anywhere now and my Georgetown oncologist does not want to put me back on the Luperon, Abieraterone, Prednisone, etc until she sees something bad on the scans. The reason being that the side effects were tough on me. Maybe you can take a drug vacation, depending on your PSA being undetectable?
Echoll: You’re the 2nd person to recommend a vacation. I had a lot of anxiety going from 1000mg of ABI down to 250mg. I don’t know if I could handle a vacation mentally.
Putting aside my recent “extra” SEs, I played a regional tournament just after my 6th cycle of chemo. My partner is a National Champion. We were two and out against 4.5 players that we should beat. It’s my last tournament. I can’t believe how my skills have degraded in 1 year of treatment. Theses drugs are incredible.
I am probably the least knowledgeable and least experienced person (PCa wise) on here. I just wanted to say that I started on 1000 mg of abiraterone daily, along with 5 mg of prednisone (plus Eligard.) I could not tolerate the abiraterone (horrible cough) so stopped it and the prednisone completely. Once the cough stopped I suggested to my oncologist that I try 500 mg and have been taking that for just over two weeks and have had no problems with it so far. Is it possible that your side effects are caused by taking too much prednisone? Hope I'm not wasting everyone's time. Good luck.
Grant: when I switched from 1000ng ABI to 250mg, I asked my MO about reducing the Prednisone. He believes that 10mg is so mild, it wouldn’t matter.
But, when DX, I was told to stop Ibuprofen for inflammation. I switched to Tylenol, which caused my liver enzymes to skyrocket. Also, at the same time, my urine looked like tar. MO took me off ABI, but after consulting, we agreed tha t the Tylenol was the issue. Currently, I take 5 tabs of Ibuprofen a day, which combined with the prednisone, may be the issue.
I am not officially enrolled in this trial but I am " in it". Off all meds since June 2022. By the way, my liver numbers went crazy while on 1000mg of Abiraterone. MO had me quit for 7-8 weeks then restarted at 500 mg. Went to 750 since liver numbers good. My PSA has been <0.01 all the time. Very scary going off meds but I feel so much better. Even have hair on my chest.
This may be a coincidence but I think not. I have been on Lupron since June 22 and Abi since Sept 8 23. I also take 200 mg of Celebrex and 20 mg of atorvastatin daily. All the side effects that I have are extremely mild. All the drugs listed are hard on kidneys, heart and liver and yet my liver numbers are normal and my gfr is 117.5. I knew this when I started treatment so I researched how to help these organs. I am taking 2800 mg curcumin and 400mg magnesium daily. I suggest you research the mentioned supplements with each organ listed and see what you find. Also google curcumin and Celebrex to fight prostate cancer. By the way, bp 117/69 last check so better check curcumin, magnesium and bp. Best of luck, God bless.
TMcgee my husband is also one year out from diagnosis on a similar course of treatment but without the chemo. The symptoms that you're describing can be associated with post covid syndrome. Many if not most of us have experienced a covid infection, unfortunately. One of the things that is coming out with post covid is the kinds of symptoms that you're describing. Shortness of breath, drops in blood pressure when you stand up, dizziness, kidney function issues, and so on. Not saying that it's not related to your prostate cancer treatment, but a visit to a general practitioner and or your cardiologist may be in order. Oh the joy! Hang in there.
thanks! I’m on it. Covid test was negative; but, based on research you may be right. I’ll be seeing GP tomorrow. I plan to ask for an appt with Cardiologist, in addition to the referrals that I was already planning.
Awesome. The post-covid stuff is weird. You could have asymptomatic covid months ago and still end up with long covid. We have a lot to learn about that virus. Meanwhile, the GP will cover all the bases UTI, etc. Congrats on a year! I know how thrilled my husband and I are to have passed that milestone with good results like you have had. I suspect much more pickleball in your future....
Interesting, it’s a milestone that I have mixed emotions about achieving. The median overall survivability on Peace-1 trial was 42 months, which leaves me 32 months. Just to be clear, I built econometric models when working, so I fully understand the lunacy in my statement, but….
Sir, I don’t know if you are a man of faith but I am. My belief is that I am immortal until God wants me and when he does, no doctor or treatment can add a single day to my life. I have never asked for healing, only wisdom to make the right choices. I had a Psa of 5664 May 22 with cancer in my lungs, bones and nodes. Last month I went hunting for the first time in 2 years and got a big deer and got him out myself. The odds of me even being alive are slim let alone living the life I do. Don’t look at the odds. My former urologist had a patient that came to him with a Psa over 7000, got 3 three mo. Lupron shots and refused further treatment. Still going strong 10 years later. Think of those odds. Best wishes and may God bless.
Hunt, choose wisely and take aim....most of them will want to see your hunting permit and share an expensive candle light dinner, before you can fire.........
My husband and I are ecologists who work in probability and modeling all the time, so I can understand how your thinking might go. When he was first diagnosed, he began working on a book that will be a synthesis of over 40 years of research. I asked him why he was working so hard on it (and constantly), and he wouldn't say at the time, but recently said he was convinced he was going to die before he got it done. Based on his response to treatment, I knew this was highly unlikely, but - I have not lived with cancer, like you all are doing.
From my reading of the trials and the literature, your PSA at one year may be promising for you. Also, can you imagine all the confounding variables involved in clinical trials? And we thought economic/ecological modeling was fraught! Best to you and to navigating this journey with your analytical mind - hope you feel better soon.
Thanks for sharing. I can definitely relate to your husband’s mindset. On the plus side I have no co-mobilities, exercise, good bmi, and no bad habits. On the other side, I read that the average participant in a trial is 10 years younger than the average patient. My mind immediately tells me that age is highly weighted. I wouldn’t start writing a book.
I have one goal. I lived with the love of my life for 40 years. Last January 20th, we were married. I promised her that I would live one year. So far so good!
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