Xtandi the right thing?: Hi after... - Advanced Prostate...

Advanced Prostate Cancer
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Xtandi the right thing?

rkengen
rkengen

Hi after having 6 rounds of chemo docetaxel untill june , and shots of zoladex every 3 months, psa was up last month to 32 and got xtandi , taking this now for a month and psa went up to 46. I still get also the zoladex injections. And doc sais come back in 6 weeks. Anyone suggestions what else to do? I have mets in bones

Thx a lot

33 Replies
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I was put on Xtandi (enzalutamide) fifteen months ago and the effect was immediate. My first PSA test showed a drop. However, some people don’t allow drugs enough time to work so my advice is wait the six weeks, get another PSA test and then go from there. I would also research alternative options: e.g. Zytiga (abiraterone), Lutetium 177, clinical trials etc.

rkengen
rkengen in reply to RyderLake2

Thank you for your replu as I am already nervous

rkengen
rkengen in reply to RyderLake2

Yes ok i will thank you

I would seriously consider a Center of Excellence Cancer Center, and obtaining a second opinion on treatment plan/w Doctors, that only engage in Pca. PSA rising on Xtandi, can be concerning. Others here may provide possible Alternatives--I cannot as I am not a Treating Physician. Yesterday one of out posters put out a List of Centers of Excellence. You can also post, asking for referrals, based on where you live--there are others here who can respond as to this. Waiting 6 more weeks seems odd to me. You may wish to consider the following tests, Etc. Alk. Phos blood test, Chromogranin A---blood test. Getting Gene Mapped at say Foundation One --800 Number at their Web Site,---> to determine any Gene Mutations, which may determine Targeted Drug Therapy, also from a medical procedure point of view--a Biopsy of one of the Bone Mets, to determine its nature.

Nalakrats

rkengen
rkengen in reply to Nalakrats

Oncologists told me to let xtandi work as i am just on it , to early to tell as psa is slowed down already

Nalakrats
Nalakrats in reply to rkengen

Lets hope and pray the Xtandi catches up with the disease, and brings down that PSA. Not everyone reacts the same. We here at this site have heard of remarkable positive reaction within 30 days, and slow reaction, but good after 6 months.

Nalakrats

You can try Xofigo for the bone mets. They want to check for radiographic progression before giving up on Xtandi and trying Zytiga. Provenge is possible too. There are lots of clinical trials you can discuss with your oncologist.

rkengen
rkengen in reply to Tall_Allen

Thx i will ask my oncologist

rkengen
rkengen in reply to Tall_Allen

Thx so much , i will check with oncologist

You could also consider the clinical trials with Lu 177 PSMA and Ac225 PSMA, since your PSA is increasing after castration, chemo and now enzalutamide. Search in clinicaltrials.gov for Lu 177 PSMA and Ac225 PSMA. These are systemic treatment which can kill cancer cells anywhere in the body.

Discuss the possibility to biopsy metastases if possible or genetic tests using "liquid biopsies" looking for circulating cancer cells or circulating DNA (ctDNA) to study if there are mutations which could be treated with specific drugs, such as Keytrude, Opdivo etc.

rkengen
rkengen in reply to tango65

Thx a lot

rkengen
rkengen in reply to tango65

Thank you i will check with my onco

Two things to keep in mind...Cabazitaxel (Jevtana) sometimes works when Dosetaxel fails....An interesting treatment undergoing trials is called BAT..It's inexpensive (testosterone is the active ingredient) and in 50% of those who try it, a nice remission results..It also can "reset" Xtandi and Zytiga so they work again...

After chemo failed for me I was put Xtandi. No side effects and NO impact at all on disease progression.

I am now on clinical trials because there isn't really anything left (my mets are mostly visceral so Xofigo is no use to me). Tall Allan is on right track.

Keep fighting.

Xtandi didn't do much to help my dad. He was prescribed it for close to a year and experienced several side effects from it. The PSA remained low and within normal range for a few months but was still increasing nonetheless. After close to a year on Xtandi my dads PSA shot up to around 50 or 60 and after that it has been nearly doubling every month since until it finally hit a mark of 500. The doctors may have waited too long but when they found out about the PSA reaching this mark they didn't wait any longer and almost instantly put him on Jevtana (Cabazitaxel) and he has stated that his pains are much more controlled now. He had a great response from Docetaxel as well, which was his first treatment along with radiation, PSA went from 130 to 0.4. He began Jevtana about a week ago and he's holding up fairly well now after spending a couple of days in the hospital for dehydration. HIs diet consists of soft foods, juices that we make ourselves using a juicer (carrots, pomegranates, apple), and lentils/soup. We also give him some RSO to help with sleep at night and CBD oil occasionally during the day when he may have some anxiety. He goes in for Radiation this Friday, to treat some of the mets on his back. Let's see how it goes, I'm just happy he doesn't experience the same pains that he was experiencing a few weeks ago.

Trecento
Trecento in reply to Newguy_87

Hi - there is some evidence that metformin, berberine and quercetin are agents that can assist with resistance to Xtandi - quite a few articles on the pubmed database. Perhaps worth considering. Best wishes for your dad.

Newguy_87
Newguy_87 in reply to Trecento

Thank you and I will look deeper into this. Right now the oncologist recommends staying on this treatment of cabazitaxel simply because my dad had such a great response to docetaxel the first go round. As things progress I will mention these treatment options that you suggested to the oncologist. Thanks again for you’re input.

I would say stay on top of it. My husband failed docetaxel last dose was Aug 1 2017- PSA14. Dec 2017 went on Zytiga, he felt aweful and declined rapidly. We thought it was the side effects of Zytiga. Jan 26 2018 -PSA now 688 and cancer micrometastasis to his lungs. He stopped Zytiga and started cabazitaxel. Listen to your body, it will speak to you.

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rkengen
rkengen in reply to Godschild62

Hi how did the cabezetaxel worked for you? Thx

Godschild62
Godschild62 in reply to rkengen

Initially my husband had a great response. PSA dropped from 1098-124 after first treatment, unfortunately it didn't last too long. He started it March 12 2018 and it failed in September. My husband passed away Dec. 29 2018. Listen to your body it speaks to you. God bless you on your journey!

Hello My husband began Xtandi in May. His PSA went down the first two checks (every 6 weeks) and then rose. Scary moment but our oncologist said "lets wait another 6 weeks and check again" Easy for him to say...difficult 6 weeks but low and behold it went down 6 weeks later from 1.55 to 0.7 I certainly cannot tell you what to do but this was our experience. Hang in there

Question,

Did you have a scan, Axumin, C-11, etc

to reveal those bone metastasis? What are the locations and number of bone Mets?

The doctor put me on Xtandi after chemo, monthly shots of lupron and Xgeva for the bones . PSA has been .05 since. 28 months and counting.

Hi, so sorry to hear about your plight. I can understand what you're going through because my story is similar to yours. I was diagnosed about the same time stage four Gleason 10 had the Zoladex did the six infusions of Docetaxol and that didn't stop it.

I've been on Xtandi for three days now and believe me I've got everything crossed. All i can say is i think we both are getting the best of treatment and we need to stay positive and give it time to see if it works for us. I'm keeping occupied by doing research and reading this forum so that i might be ready for the next step I need to take. There is a wealth of expertise and support here on this forum from kind people willing to share and listen to you. Personally its of great comfort to be among these people so lets heed what they say and hopefully we'll get this horrible disease under control.

All the very best.

Richard

rkengen
rkengen in reply to riichardd

Thx so much for your response. I even find it hard to read so much about the topic and what to do . Do u also have backaches?

riichardd
riichardd in reply to rkengen

There is a lot of information out there, some of it conflicting. I am just learning about PC and coupled with the brain fog and fatigue caused by the drugs we're on my head is spinning some days. Stress is another difficult one to get by. They say you should live in the moment, meditate, get busy and get on with it. My onc recently told me I had less than a year if they couldn't find something which would stop my cancer spreading. That had quite a galvanising effect on me. I am busy reading up what trials/treatment might be available to me should xtandi fail. They've done a biopsy on a tumour I have in a lung but what the holidays I don't get the results until 7th January . I might have a better idea about available treatments after that.

Fortunately I don't have back pains at the moment. I'm still on the full dose of xtandi to give the cancer the best shot I can. I do have fatigue which is coupled with lack of sleep probably due to xtandi .

You have to try to keep going forward and enjoy the days when you feel a little better. I hope you're able to do this in whatever way you can and let's both hope they can pull something out of their well padded bags to fix us.

Richard

rkengen
rkengen in reply to riichardd

Hi Riichardd , how do u deal with it in your head, i find it soo difficult. Knowing they say a year and going in anothee round of chemo etc. Thx

I'm 71, and was diagnosed 2009, gleason 9+9 and inoperative Pca.

It probably began in 2004. But the Psa was low at 6 in 2009. I got good suppression with ADT until 2016 then got 6 months with Cosadex, 8 mths with Zytiga, but all these drugs stop working after some time and docs would not let me try Xtandi. So this year I had 5 chemo shots with Docetaxel and Psa went from 12 before to 45 at 15 weeks, so it looked like a failure so I am now having Lu177 infusions every 6 weeks. First one was 4 weeks after previous chemo, and now its 5 weeks since first Lu177. Psa went down to 26 just before first Lu177 and now its 25, so Psa seems to have flatlined, but I feel a whole lot better because side effects of chemo are nearly gone. Next Lu177 is 4 Jan 2019 and I have no idea if its going to reduce the Psa and reduce the large number of bone mets and soft tissue mets. Lu177 takes time to work and nobody can predict how well it might work, and the problem with treating Pca is that what works for one bloke does not work for another. But last week cycled 256km at av speed 22.0 kph all around my town and I felt very well. The doctors have no idea if the Lu177 is doing much yet. I will get a scan later to find out more, and I may be told the Lu177 is not working at all if the Psa goes up and scans show no tumour size reductions. Before I began Lu177, docs found that all my mets showed up in Psma scans and that indicates Lu177 should work.

I have no idea how long I will live. Provenge is too expensive and most likely to not work for long, so if Lu177 is useless for my bone mets I might have Ra223, and there is only more chemo after that, with Cabazitaxel maybe or carboplatin with more severe side effects.

The ADT and Cosadex and Zytiga do not kill many cancer cells, and many keep growing, but very slowly while these drugs work, and when they stop working the cancer "takes off" with high doubling rate and then the scans are able to see the many mets because they are big enough to see. Scans may show no cancer, but there is plenty present, in very small mets which have almost no effect on health and cause no symptoms. So a clear scan does not mean very much; it just means nothing has grown big enough to make an image in PsMa PET or CT scan.

Its been raining here for 2 days, and I am waiting for sunshine to get out on bike.

Patrick Turner.

Hi i m going to start cabezetaxel with carboplatin cocktail, they want to attack agressevely. I hope it works. My back is stiff sometimes severe pain, gad two spots radiated.

Would love to forget all n go on my bike! Pff how do you cope n stay positive?

Hi rkengen,

Good luck with cabazitaxel + carboplatin. Aggressive attack might mean more severe side effects than with say Docetaxel alone.

I guess you have bone mets and they are the most difficult to treat.

I am not sure why I remain positive most days and through the long nights but I have cycled about 240,000 km so far in my life and I don't seem to want what so many others want. I married once, at 28, and the lady fled after 18 months, terrified of going all the way to having a child or actually having to care about anything, so I learnt early to not expect things to turn out perfectly, and while everyone around me wanted to travel and change jobs and re-marry and buy piles of junk, I just saw all that as vanity and folly, putting on the agony, putting on the style. I just wanted to work to build buildings and keep my body good and mind sane, and I needed to be settled down and able to focus, and I never cared if others, especially women, thought I was boring.

I was forced from the building work by bad knees, so changed trades to being electronics tech. Sit down work. The internet came along and I liked having a PC and I made a nice big website on electronics. But I found the Internet did not allow me to find a partner, and dating sites now seem to be impossible to use, but that's OK because you will never find anyone within a 20km radius of where you live, and who is honest.

I don't like FarceBook, don't like Twatter, and I don't use a mobile phone.

I do not feel anxious or insecure, and I have no debts and no enemies

other than old age and effects of Pca treatments.

In essence, I am grateful to have a very good life free of the common unpleasant loads of dealing with anyone who is a pest but who I cannot avoid. I tend to always see the good, not just the bad in others, and I give encouragement to those who help me live, and when I am in hospital the nurses are like angels and I try to be very nice to them all, because being in hospital is the nearest thing to being happily married I ever experience.

I had 2nd Lu177 a month ago. I have tried to continue cycling like before this last infusion when I did 960km in 3 weeks, and with good speed, and feeling very well. But after this last infusion, I tried to cycle, but got hip joint pain so I quit for 2 weeks. In that time I felt well, could walk around OK and I had hired a fencing contractor to build a new 40M long steel panel fence around my pool area. Instead of cycling, I spent a week helping this good man get through the contract, and so it was hard work and very hot weather but I got through that like I was 25. I had been taking prednisolone

though, 2 x 5mg a day. So when the work was all done, I managed a 50km ride, and thought all would be well so I quit taking the pred, because I'd quit that before last Lu177 shot and all had gone fine.

But the hip pain came back, so it means something is wrong with hip and I know there is Pca in top of femur and maybe enough to now cause joint to become inflamed and I can't cycle, strange, because I can walk OK, and usually if you can't walk, you might be able to ride, which was what I found before having both knee joints replaced in early 2017.

I might have to take pred again and there is a possibility that my adrenal glands are damaged after being on Zytiga in 2017-2018, so something could be wrong with natural cortisol system.

So I tried to read a scholarly article at

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

and this did not shed any light on the problem of having a no-ride hip which allowed pain free walks.

But its quite likely that my right hip joint has just decided to quit being what it was, and maybe it is following what my knees did and just wear out the cartilage. Many other ppl have no trouble with the skeleton; they have done twice my life's activities and joints are all fine. We all get given a different variety of "body properties" and we come to find our differences to others as we get older. So the guy who is faster at cycling might have a bad heart,

or he has a bad temper, or has a cantankerous missus.

Anyway, I'll try again to cycle, and if hip pain persists, I'll try going back onto prednisolone, and see what happens. I am having PsMa Ga68 PET+CT scans on 5th Feb, and docs can have a good look at Pca situation, and maybe they may tell me "its no wonder your hip is sore....." and if I cannot cycle, there's other things to commit to. It is a marvel that I have lasted this long without catastrophe preventing me from typing to other good ppl I have met here.

I am 71, but I have a friend under 60 with much worse luck than me with Pca. I phone him and his Pca confounds the doctors, its mutating and behaving most impolitely, doing very alarming things, so he looks like getting carboplatin soon, because cancer spots in his liver are not PsMa avid, so he can't rely on Lu177 which is often good at killing soft tissue mets.

The last few days were a heat wave, with 42C here yesterday, a fan going all night, not good, but today is a pleasant cool day, maybe only 33C later.

Its lunchtime soon, lovely waitress at the café, I can sit to read newspapers in peace, wonder about the silly world, and be glad I don't have it so bad as millions of others.

Patrick Turner.

Take Zyflamend with it , I'm not a health care professional

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