Stopping Zytiga d/t side effects

[Veronic]

Dad just stopped Zytiga 2 days ago d/t extreme weakness and fatigue. He’s been on for 2 years and PSA 0.3. What have others experienced after stopping this Med?

[Tall_Allen]

He's still taking the prednisone, I hope?

[Dett in reply to Tall_Allen]

Allen, I thought the only reason for the prednisone is to blunt the side effects from the Zytiga. Why do you still need prednisone if you stop Zytiga?

[Tall_Allen in reply to Dett]

Stopping prednisone abruptly causes ACTH to spike. Prednisone has to be slowly withdrawn.

[Dett in reply to Tall_Allen]

Thanks.

[Veronic in reply to Tall_Allen]

Yes he is and can walk again

[Hidden]

Many have had success by reducing the dose, while still getting good effects with less side effects. Has he tried or discussed this approach with his doctor?

[Hidden in reply to Hidden]

My husband cut the dose in half and it still works great, with hardly no symptoms. When he was on the full dose it nearly killed him. Shortness of breath, dizzy, complete loss of balance. exhausted. After numerous tests, they decided to stop the Zytiga to see if it was the drugs. Within 2 weeks he felt so much better. Then switched to the half dose. So far so good.

[TEBozo in reply to Hidden]

I am on 750 mg daily and when I went to the full dose of 1000 mg my BP went crazy.

[Patrick-Turner]

I began ADT in 2010 after Dx 2009 at age 62, with Gleason 9, inoperable. but ADT failed in 2016 and Cosadex was added which gave only 6 months of Psa suppression, with some added salvation SBRT also in 2016 to PG. I then had Zytiga added to ADT for 8 months in 2017, and it gave only 8 months Psa suppression. Pca mets grew slowly, but increased in number and size.

Then I had chemo in 2018, which made Psa rise.

The side effects of Zytiga were upset heart rate speed. thought to be from lack of Potassium so I ate a lot of button mushrooms and English spinach and that reduced the HR bother.

Now ever since 2 years before Dx I have been a fairly keen cyclist and I averaged about 220km a week, with cycle rides up to 100km+, so all through that time on Zytiga and beyond to now, I have had a splendid fitness level, BMI 23 right now, waist 92cm, resting HR 48beats per minute and no problems with cardio vascular system.

I had 10mg Prednisone per day while on Zytiga because it replaces what the body makes because Zytiga affects the function of adrenal gland. The strangest effect occurred where I would set off with a group of cyclists on an 87km Sunday ride and after first few km and at top of first steep hill. I had a pulsing pain problem like sciatica but going upward on spine to back of neck that made me wonder if I was about to die, but after rest at set of traffic lights of about 30 seconds, HR calmed down and I got through the next 80km just fine. But not when weather was hot at over 28C, so I had to give up cycling with the group and begin my Sunday ride before 6:30 am to avoid the heat later in the day. I stopped Zytiga in about mid 2018, and then began chemo with Docetaxel. The pulsing pain bother went right away over a few months during chemo, and I kept cycling, but not as far or fast. Fatigue was the least of my problems through the whole time since Dx.

I had Lu177 from November 2018 to May 2019, with added Xtandi in April 2019 to present. I doubt Xtandi is working, but I am having more Lu177 now and Xtandi is thought to boost performance of Lu177, and Psa is going down again nicely. So at 73yo, I managed to cycle 180km this last week on the 3 days that it didn't rain or snow. I spent productive time in shed on craftwork, and I can only say that fitness and a good diet are essential to minimize side effects of so many drugs.

When these drugs are tested the patients are carefully chosen to try to make sure minimum side effects will occur, but many patients are older than average used in trials or tests, and sometimes with many other health problems so any added drug that is used in addition to what some patients are already taking may have an adverse range of side effects.

Prednisone taken for 2 years is a long time, and the adrenal gland cannot return to make a natural supply if Prednisone is stopped suddenly. If Zytiga is stopped abruptly, Prednisone should be gradually reduced over about a 6 week period by slow reduction of dose which should allow adrenal gland to slowly begin to make the natural supply. So dose might be 7mg, 5mg, 2.5mg for each 2 weeks after stopping Zytiga. Some men are far more sensitive to levels of Prednisone than I seemed to be. We are all different.

And during any time there is extreme fatigue, what is indicated in blood tests?

I hope your Dad's doctors can find out reasons for what is going on.

Patrick Turner.

[HopingForTheBest1 in reply to Patrick-Turner]

Where are you getting your Lu177 treatments. Covered by insurance, or out of pocket cost? Side effects from Lu177?

[Patrick-Turner in reply to HopingForTheBest1]

I live in Canberra, a small city 300km south west of Sydney in Australia, where I get Lu177 from Theranostics Australia who have details at their website if you Google it.

Costs are usd $350 for each of 3 PsMa scans before, during and after getting Lu177. Each of 4 infusions of Lu177 costs usd $6,800, and our Medicare does not cover any of this and I am not sure if any insurance company would cover it because like in USA, Lu177 is not fully approved. So I paid about usd $28,000 last year from my savings last year for 4 shots of Lu177, each 8 weeks apart. But I met 2 men from USA who had flown over to Sydney to get Lu177.

My side effects were minimal, with non permanent slight dry mouth but only when cycling hard on my bike, or if I slept on my back.

Psa was 25 before Lu177, 0.32 at 12 months, but 30 at 18 months, because of new mets in bones, and some that were not fully killed. But no soft tissue mets at all. I have had first of second series of Lu177 shots, and Psa has already gone to 15. I had Xtandi during last year after 3rd Lu177 shot; maybe it helped to lower Psa, and make 4th shot more effective, and docs think Xtandi is probably not effective any more, but is making remaining Pca mets make more PsMa expression thus making Lu177 uptake at mets higher to get better Pca killing effect. I also was supplied Veyonda for free by its maker to help make PsMa expression higher, so I expect good result with the present series of Lu177, and maybe I only need 2 shots.

Meanwhile I gave blood sample for DNA analysis and in 5 weeks I get results to look at maybe 14 different genes now known to make cancer likely. This is all free from Medicare. If DNA analysis suggests PARP inhibitor like Olaparib might work, there is a chance for remission.

Patrick Turner.

[HopingForTheBest1 in reply to Patrick-Turner]

I have been on Olaparib for the past 18 months on an off-label basis, outside of clinical trials, as I am BRCA2+. It has worked well for me, keeping PSA undetectable for over a year. Now rising slowly from 0.02 to 0.05 to 0.14 in the last 3 months.

Will be discussing what to do next with my Oncologist soon. Just had 2 updated scans last week and waiting for results.

Also looking to possibly participate in a PSMA clinical trial here in the US.

[Patrick-Turner in reply to HopingForTheBest1]

Thanks for responding about Olaparib, I may get some soon.

Were there any side effects?

If your Psa was less than 0.14 it may be difficult to see much in most scans I know about, including PsMa Ga68 scan, and if the small amount of Pca that you seem to have does not generate much PsMa expression, then PsMa scan won't generate much image. I had PET FDG scan which uses radioactive sugar to see where that is uptaken by mets which do not make PsMa and there was no image formed, so I was clear, and lucky that all mets are making PsMa so I should get response again with Lu177. My Psa before this second round of Lu177 shots was about 20, and mets making PsMa all showed up well, except maybe for microscopic mets. The danger is that I have a lot of those, because Pca generates mets from primary site at PG, but then later mets are spread from mets, so these all will grow big later, and not be seen until years later, and by then the maximum allowed number of treatments by Lu177 has been reached, and these can be mutated and be untreatable. It seems Lu177 cannot work to eliminate extremely small mets which don't show up in PsMa scans.

In your case, you may have only a few mets that are causing Psa to double each month, and depending where they are may allow SBRT, but if there's a whole pile of tiny small mets then systemic treatment may be needed.

I suspect I still have a long fight ahead and one I may lose due to mets that keep on appearing in scans despite good responses gained with various drugs plus the Lu177.

I gave a blood sample last week for geneticist to examine for gene defects such as Brca1+2, but also for about another dozen gene defects that indicate possibility of other cancers and diseases likely in future. There is a big bank of knowledge building up because so many ppl have had DNA analysed, now leading doctors to know what may be best drug to use or NOT to use for cancers and other diseases. I was told to have DNA tested again in about 3 years to see if any changes have appeared, and by then the bank of information about DNA faults will have much increased because this science is increasing so fast.

This DNA analysis isn't costing me a cent because its provided free by the local Govt owned Canberra Hospital. So those in charge of hospital must think that its a great idea to foster the latest most sophisticated way to treat patients with the most well chosen drug, which would reduce the Govt costs of providing free treatment to all ppl who are admitted, rich and poor alike. Much of the treatment now given has been "one size fits all" with results that make cancer treatments so unpredictable, because its basically trial and error with low remission rates.

With DNA analysis, docs should be able to work out whether ADT would work, or EBRT, and which is best chemo if any, maybe not from their clinical experience or drug trials, but from what the ppl working doing analysis, who can interpret the data and the linking of data to disease. I want to benefit from this quiet advance now being made.

It was -3C earlier this am, good frost, but will warm into very nice day later, so I'll be able to cycle about 60km+. Right now at 9:30am it is still to cold to be in my workshop. But by 11am, its out the door I pedal, across town to an Italian restaurant for lunch, and beyond for a few hours.

Patrick Turner.

[HopingForTheBest1 in reply to Patrick-Turner]

It's 8:30 pm here and 80 degrees celcius.

I believe the side effects of Olaparib have been fatigue due to anemia, and I had a partial blood clot in my left thigh which was cleared up by the drug Eliquis. It's hard to differentiate as to which drugs cause what specific side effects.

I had two different genetic tests. One from Color.com, a saliva test. The other from Foundation Medicine, which used tissue sample from biopsy.

[Patrick-Turner in reply to HopingForTheBest1]

Maybe you are right about not being sure about what drug causes side effects if you are taking more than one.

In my case, maybe if I keep cycling a lot, the drugs will be too scared to cause side effects, and thus maybe I don't suffer.

I did 84km on bike today with good average speed for first 33km, a good sign there just ain't much wrong with me.

At present, the DNA analysis is based on a blood sample for me without any biopsy, and doc said its enough to see if I may get a benefit with whatever drug is selected over next 2 months. I have a month before next Lu177 shot, then after that I get DNA results and then the plan of action for me may change.

Keep on keeping on,

Patrick Turner.

[HopingForTheBest1 in reply to Patrick-Turner]

Best of luck my fellow warrior.

[Patrick-Turner in reply to HopingForTheBest1]

I'm hoping Nature lets me live a bit longer with a bit of help with nuclear doctors and their mini atomic weapons.

I cycled 84km in cold weather yesterday, and today I feel just wonderful.

So I must be doing something right, but now I'm hungry, and must away to a local Thai cafe where the Tasty Vego Sandwich is irresistible when served by a smiling young dame.

Patrick Turner.

[HopingForTheBest1 in reply to Patrick-Turner]

FYI. I posted to the group a link to an NIH study about comparing side effects of PARP inhibitors. Here it is.

ncbi.nlm.nih.gov/pmc/articl...

[kiskadog in reply to Patrick-Turner]

What are the symptoms that may be expected if prednisone were to be stopped too abruptly?

[Patrick-Turner in reply to kiskadog]

I'm not sure. I did stop cold a couple of times due to forgetfulness, and once I used some spare remaining 25mg tablets after chemo, and I felt no different cent, and docs rolled their eyes, but didn't warn me that I could die, and because I am a rather hardy fit old man of 70+ rides 200km a week a high number side effects from many things just don't seem to happen with me. There should be some listed side effects on quitting Prednisone at respected websites you can Google. I was given some Prednisone pills to take after last Lu177 shot on last 24 July for probable bone pains, but didn't need them either. Such steroids are supposed to make me cycle faster, and feel less pains of being an old man generally, but these general effects didn't happen, and I am able to cycle nearly as fast as in past years, and that's what stops a few pains of being old.

I try hard enough on my bike to put myself repeatedly into high stress zone on the bike, but I don't go near the really steep hills I used to ride when I was younger when I raced during my 40s. I rarely drink, and I have a no junk-food diet that cannot be improved upon, and docs like seeing me turn up to talk tho them dressed in lycra because I'd cycled 20km across town. So a pile of things that affect other men seem to just not affect me at all.

Prednisone can be addictive if someone has too much, say over 20mg daily, and some use it for chronic pain relief. I don't take any painkillers. Sure, I got some bone mets but so what? I just keep going. I was lucky to get to have Lu177, and it worked better than chemo for me, and I'm able to have repeat doses of Lu177. I've just given blood sample for DNA analysis of many genes, not just Brca1+2, to find out what drug could benefit me, maybe Olaparib, but from DNA analysis I might get a whole lot more useful info because this emerging new science is getting better.

My Pca fight ain't over yet, but small amount of Prednisone is just not a big deal for me and it seems I could have a bit too much or none at all made in body or from a bottle but maybe not for a too long amount of time. I had some heart rate side effects with Zytiga, and I really just don't know what effect the Prednisone that I did take actually had on me. I kept cycling 200km a week right through that time.....

Finally, after days of terrible winter weather, its a nicer day, and I can see the snow on nearby mountains. I did manage 180km on bike last week between rain showers. It snowed here in town last Saturday. Spring is reluctant to arrive here, but it will, and as temperatures rise a bit I hope to cycle a bit more.

Patrick Turner.

[milto27xabc]

ive been on lupron since 2007 and zitiga and prednisone since oct 20. lots of side effects worst is fatique &skin cancers. cut prednisone from 10mg/day to five and skin cancers stopped. cut zitiga from 4 tabs/day to 2--but no efect on fatigue. I lift weights every 2 days and walk the other but no effect on faigue which has ruined my QOL.

[treedown in reply to milto27xabc]

Are you saying skin cancer is a side effect of lupron and or zytiga?

[milto27xabc in reply to treedown]

prednisone lowers immunity and the skin cancers are a result

[treedown in reply to milto27xabc]

Do you spend a lot of time in the sun?

[milto27xabc in reply to treedown]

no but my arms are very dark because of sun and prednisone

[pinejogave in reply to milto27xabc]

Very interesting I’ve been on Lupron since 2002 and Zytiga 4 tabs and 10 mg prednisone a day, Recent multiple skin cancers and with scabs on my arms and scalp Dermatologist hear cancer and don’t know how to respond PSA went from 315 to 405 in 30 days.Time for a change

[j-o-h-n]

Greetings Veronic......Please be Versonic and tell us more about your Dear Dad's bio. Age?

Location? Scores psa/gleason? Treatments to date? Treatment Center? and Doctor's name(s)? All info is voluntary but it helps us help him and helps us too. Thank you!!!

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 08/23/2020 2:20 PM DST