Hi Could anyone let me know please if they have had experience with PSA going up and then down with Xtandi?
My husband has been on it for 5 months, first month his psa went down from 37 to 32. Then after dropping it for a few days because of side effects the following month it went upto 54. Then 56 and this month 63. I wonder if this is already a pattern or he should wait a bit more?
He has other probs, heart and parkinson so chemo isn't advisable. I'd appreciate any reply, getting very anxious. (before he had Firmagon for a year before he became resistant)
#xtandi #prostrate resistant #Psa
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JuanVV
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My husband lasted about 6-8 weeks on it last year. Side effects were horrible for him - extreme nausea, extreme vertigo, so much so that he needed supports to walk - even to the loo. And his PSA continued to rise.
Knowing we're not alone in this battle helps so much.
I'm waiting for the Prostatic acid phosphatase result, as soon as i have it I will send it to you. But his Alkaline Phosphatase is 1102, in June it was at 968, in May at 912.
His T is 1.07
Just for a bit of his history: in 2017 MRI revealed replacement of the prostrate and seminal vescile with cancer and a biopsy confirmed a Gleason 9 (5 + 4) group 5.
He also had and has a fixed urine catherer placed because his kidneys were swollen and he couldn't pee. The idea was to take it out as soon as ADT started working or eventually carry out a TURP. This went on for a bit because it took us time to get Firmagon. The urologist wanted to give my husband Eligard but my husband refused because of his heart condition, he takes sotapor (and blood thinners) which reacts badly with most ADTS.
So to cut a long story short he didn't have TURP done and couldn't pee without a catherer. Which means he gets urine infections frequently and this also could increase his PSA Ive been told? I wonder if this is correct?
He started Firmagon january 2018. And his PSA decreased from 44 to 3.5 in August. Unfortunately in september 2018 started to go up to 38. Forgot to mention that he fell and broke his left pelvis in May 2018, but it healed with bed rest.
This year in January some mets showed up on his CT, his lumber spine, left femur, both iliac bones. Also a scintigraphy confirmed same hot spots plus ribs , also because of his fall there was a lot of activity around his bones.
We decided with oncologist to start Xtandi in April. First month his PSA and T went down to Psa 32 and T 0.41. May results showed a rise -he didn't take it for a few days because of SE- PSA 54 and T 0.66.
Yesterday his PSA 63 T 1.07
Could this be a trend? or would another month or more give a better indication?
Anxious to know what options he has left? Because of his parkinson and heart the chemo was not advised.
What do you think? I would appreciate please your suggestions so much, you always have very good advice. I've included more or less a summary in my message, is there anything else that could spread light on his current situation? Thanks
The easy question you asked is does urinary retention effect his PSA - yes, it definitely does. The harder question is what he can do with chemo off the table. You can discuss estrogen patches. I assume he's taking a bone strengthening agent (Zometa or Xgeva)- consider adding Celebrex with it. Xofigo can reduce the bone mets, and Provenge might be a good combination with it. I think the VISION trial of Lu-177-PSMA-617 requires chemo, although they may make an exception is he can't have chemo. Talk to Scott Tagawa at Weill Cornell - he's experimenting with several radiopharmaceuticals.
Thanks for all the information, very helpful! I will discuss all this with his onco. I have a feeling onco will still want to wait a bit more. But I prefer to be ready and Xofigo, Provenge has never been mentioned by him or even less Lu-177-PSMA-617.
He isn't taking anything for bones except vitamin D, they checked and found it was low. He has oestopenia, but not too bad. He has problems with gum hence he is weary about taking Xgeva etc. Also his bones are producing too much bone, I'll find out the tech term because I can't remember. The fall he had was because of his parkinson he is very unstable, now he hardly walks, and never alone, only with my help.
I have been on Xtandi (enzalutamide) for nearly two years now. I take the four pills dailly along with a Zoladex (goserelin) injection in the belly every three months. Touch wood, few side effects other than fatigue. My PSA sank to undetectable (less than .008) for eighteen months. The last six months it has been slowly rising. It now sits at 0.55. There have been no ups and downs just a quick drop and a slow rise. I am considering Lutetium as a next step. You might want to look into that as well. Google "Vision" clinical trial. If you live close to Germany, or can handle international travel and afford the cost then check out some of the German hospitals. Most accept international patients for a fee. As far as I know, no requirement for chemotherapy prior to treatment.
Your post hits close to home as we were at the MO yesterday with the same question. Xtandi had caused hubby’s PSA to decline for 17 months but it just rose 2 points. MO said don’t stop until image verified progression. I am sure a Psma $2700 scan would show progression but the Axumin in January did not.
However, this MO prefers Zytiga any way so was willing to try it even though it’s a slim chance to work.
We asked about chemo and MO was not in favor as hubby is already frail and already has chemo brain without having had chemo.
My anecdotal experience with Xtandi has shown some minor PSA variations as things have gone along. I added Xtandi 2 years 9 months ago with a PSA of 95.0 as about 10 mets in both bones and lymph nodes were "lighting up" on a Ga-68 PSMA PET scan. The Xtandi took my PSA back down to 1.2 within several months.
During 2019 my monthly PSA numbers have been: 3.1, 2.9, 2.8, 2.9, 3.2, 2.9, and 3.5. I have considerable fatigue, and the usual low testosterone side effects, but no really serious or painful symptoms or side effects. Blood work and other markers are good. Occasional Afib episodes which are still responding to heart medications are actually worrying me the most, while they are happening. I'm inclined to keep riding this Xtandi horse until things really change - maybe until into the PSA 5-10 range. Then I'll seek new imaging, perhaps a search for genetic testable biopsy tissue, etc., before stopping Xtandi and moving on to other Options that may be available at that time.
It is all a far cry from a PSA of 5,006 at original very metastatic diagnosis some 5 years and 9 months ago. Too late for any curative prostate surgical or other procedures. Nevertheless, I've had some lucky biology and treatment responses. As has been mentioned, the PSA number is just one factor to be considered. I think that what the cancer mets are actually "doing" becomes more important in the later stages of advanced disease.
Thanks very helpful, and it's great that Xtandi is keeping it at bay despite fatigue. Are you taking anything else? My husband has Afib also, so it's difficult to handle sometimes. But you've done very well!
Just taking the same "lupron for life", which I'm still taking after 5 years and 9 months, getting the 3 mo. depot shots, and Zometa for bones, which at first I got as monthly IVs, but have since reduced to every 3 months. About 3 years ago I did Provenge, too.
I'm sorry to read that your man's response to enzalutamide has not reduced his Psa, and I think my onco would conclude it was not working. Where enzalutamide does work when added to ongoing ADT with Lupron injections that cannot keep Psa down, the Psa will drop quite a bit, and stay low for a mean time of maybe a year, very like what abiraterone does, but some men get a far longer time of suppression of their Pca progress from either drug.
I'd suggest getting Lu177 if he can't handle chemo. I found I coped very well with 5 chemo shots but it failed, Psa went from 12 to 50. Then I got Lu177, but between stopping chemo and starting Lu177, Psa went down to 25 in month, and after 4 x Lu177 shots Psa is now about 0.7, and bone pains are gone and I feel OK and very few side effects, so I cooped well with Lu177 at 72y0.
When ADT or other HT fails and a man gets no help from chemo, there does not seem to be much else he can get except the nuclear medicine.
I'd say your man should get a PsMa Ga68 scan asap to see if his Pca is treatable with Lu177.
Some above mentioned the cost of PsMa Ga68 PET/CT scan at usd $2,700.
Here in Australia this scan costs usd $500, so I am wondering if the cost in US is 5 times+ higher than here.
Nobody here is mentioning abiraterone, Zytiga. But it worked for me for 8 months Psa suppression, the mean time given for all men who have tried it. Its side effects on heart rate was not good, and I had some strange pains up spine that pulsed for 20 seconds that came and went, often during bicycle rides and at the top of the first hill of the day, a bit disconcerting, but then once the 20 seconds was over I was able to go on and complete an 80km ride in a group. That was in 2017 and since then a bad hip has prevented me cycling this year, and the Xtandi I am now on after Lu177 is not giving same side effects with HR. Afaik, the Xtandi is working, but there's a possibility it is not, and its possible Lu177 has done the main lot of work to kill Pca cells and get Psa low again. Usually, if abiraterone has failed, it is no use to ever get enzalutamide because it will not work, and you can't take both these things together, bad things happen. So after one or the other fails to keep Psa low, usual next step is to get chemo, which I coped with very well because I was quite fit and could cycle 20km to and from hospital to get it.
But Psa went from 12 to 50 with chemo, and hence I switched to Lu177.
The only alternative to Lu177 here was to switch from Docetaxel to Cabazitaxel, or carboplatin, and these have worse side effects and maybe would not have been any more effective than docetaxel. BUT, the doc giving me Lu177 said that the chemo I did have makes my Pca become sensitive to again to abiraterone or enzalutamide so its why I am getting enzalutamide now.
Psa reduction was well underway after 3 x Lu177 shots so docs and I knew it was working, so adding enzalutamide well before 4th Lu177 shot has probably boosted the action of Lu177. It seems like the action of Lu177 is not just for while you have it given, but its action is lasting for some time. Pca cells take time to die if they have been blasted by nuclear warfare agents, beta or gamma particles, or powerful Xrays. I guess some will survive even this assault. So I guess docs will keep me on enzalutamide if Psa keeps going down, and if it rises again, and it I get more Lu177, which is a definite possibility. As always with Pca, I cannot assume I'll ever beat this thing.
The problem with chemo is that it cannot be targeted to go only to where a tumor is located. Chemo dose affects all areas of the body, and basically its a poison. The idea is that chemo affects tumors more than anywhere else that is healthy, so the tumors die and the person does not. Well, this idea fails so often. Thus high enough doses of chemo for long enough are impossible to apply to Pca tumors.
Lu177 is able to be pumped into a body with an injection to a vein and it goes round and round the blood circulation route like chemo, but it has another special chemical added to it that makes it cling onto Pca cells wherever PsMa from Pca cells are being produced. While held close or within Pca cells the Lu177 emits enough radiation over a short distance of
less than 2mm to kill or damage whatever is there. So Pca cell cannot escape this major damage and the amount of healthy cells affected is low, so only a small dose of Lu177 is needed to get a big result. It would be impossible to use a big dose of Lu177 without the special chemical to make Lu177 only go to Pca mets.
If the high radiation dose at the Pca sites occurred all over the body you would soon begin to un-live. I like to avoid un-living while I live, OK.
Spring will soon be here, and we'll get some nice weather for awhile before the real heat starts for summer.
So despite the bad hip, I'll try a small ride or two to really see if my hip is any better after a winter of doing almost nothing. The long rest may have improved it a bit. And when both my knees were real bad, I hated walking anywhere but I could cycle anywhere and I did 220km a week.
Getting new knee joints fixed the walking pains and got back onto my bike after 3 months, and for awhile I went faster on the bike, but the Zytiga made the HR problem a lot worse in hot weather, so I had to give up the group rides in winter / spring and ride earlier alone in the days I cycled in summer.
I don't know anyone who is cycling regularly to stay fit while on Xtandi.
By the time most men have had all these treatments they are forced to not exercise by one thing or another, and its not good for me, I know this.
I'm a bit lost for words when I read your post because your husband has more than one problem, and it seems impossible to fix all the problems. I might have suggested things that were accessible to me from the medical system but too difficult for others to access. You must be having a hard time coping with what's happening. All that seems to be relevant is that you find strength to keep caring. I have been extremely lucky to have only one main problem at this time of life and I need no care from anyone, and I don't have to care for a dependent relative. There will be a time when I cannot cope alone, and I'll just have to face all that alone, and my time may come to be "managed" by paid health carers who are so often rather heartless ppl, so I don't look forward to being parked in a chair and fed bad food and not kept very clean, and probably unable to share that last part of life with anyone, probably not online. So while I could cycle during chemo, I felt 25, without much thought about the future. But quiet Sundays make me feel less secure.
I've been able to access Lu177 by myself, something not unusual I found because men were fully capable of travelling alone, and without obvious symptoms of Pca or any other problem. But at the local hospital where I got chemo most ppl had a partner there with them so whatever their outcomes, they'd not be alone. There were some very sad stories to see unfold.
I hope I have the strength to decline gracefully in future.
I'm sure you'll keep being independent for a long time. I've seen great fighters here, and I'm sure you're one of them, just be positive. I've learnt to live the day and not make future plans, things change always, and I'm hopeful that it will be full of good things for my husband despite his condition. Have a super day!
No he took Firmagon until it stopped working, and from there went to Xtandi. The onco said Xtandi would be enough plus taking both as he is weak would be too much for him. Yet Xtandi isn't working either I fear
I’ve been on Xtandi for 30 months and Lupron even longer. PSA less than .1 which Mayo calls undetectable. It seems like the xtandi isn’t working for him. But is he also getting Lupron? My onc seems to think I need both meds to do the trick.
Is he on Lupron as well? Before you panic, see what happens when you add a weekly Vit C via IV. That could turn things around very quickly if it works. Vitally important to keep tabs on Potassium levels (especially with the C as the drip adds sodium and unbalances the potassium ratio if you do not supplement). Heart problems will occur if the potassium is low. The accepted"normal" range of Potassium is too wide and will get you into trouble.
My experience is that Xtandi narrows the range of Potassium that "is comfortable", but I would suggest "high average" as the place to be (but watch for breathing problems if too high and eat some salt to adjust). Many of the "bad" side effects of Xtandi can be alleviated by adjusting the Potassium levels - too low or too high can be frightening!
Thanks for your reply No he isn't on Lupron just Xtandi. I'll look into potassium sounds interesting. They don't seem to include potassium levels in his tests, will ask for one next time. Now his side effects aren't so bad, it's just that his PSA isn't going down, just up.
I dunno about Vit C injections because that's usually beyond anyone's willingness to achieve, plus it would be dangerous if any infection were to sneak in. Most folks don't like shooting up like drug addicts.
I have to get so many blood tests each year and I would not like to insert a
needle or canula to myself to get stuff into veins. I've know diabetics to have to shoot up each day, but they get used to doing a small injection to under their skin for insulin.
BUT, I eat a HUGE bowl of fine chopped green vegies every day, so I must be getting enough Vit C, IMHO.
While I was on Zytiga, abiraterone, my HR problems were explained by having low potassium but blood tests did not show this. But I ate plenty English spinach and fresh button mushrooms so I must have had plenty of potassium. I then switched from plain salt, mainly sodium chloride NaCl to using Himalayan rock salt that has NaCl and KCl plus pile of other minerals that probably have done me well.
Injecting enough Vitamin C is a very bad idea - it would fry the immediate area! Very low concentration Vit C is available on the market, but the vial contains a few milligrams - and has to be administered very slowly. Vit C to kill cancer is 25 to 100 grams (the latter the same as 400 Vit C tablets of 250mg). But here is the trick - the Ascorbic Acid (Vit C) is neutralised with Sodium Bicarbonate, so the Ph is 7 (like water) and what you now have is Sodium Ascorbate (which is naturally found in the blood in low concentrations). That will be diluted in a bag (or part bag) of 0.9% Sodium Chloride solution and administered over an hour or two via a drip. Job for a nurse to insert that, but if someone has been fitted with a port, they could do the job themselves. All that sodium going in was the reason for my warning to add Potassium tablets to get the Sodium:Potassium ratio right. The nerves (and the heart) can stop working properly if that ratio goes wrong. The body actually contains more potassium than sodium, but we eat so much salt and zero potassium people get heart beat problems (doctors have all sorts of expensive solutions except the right one a few potassium tablets). Most people in the tropics are potassium-short because they do not make up for the loss in their sweat. Swollen ankles with water retention is a sure sign of a bad imbalance (or using Amlodipine for too long to lower blood pressure).
Thanks DavidHealth, I will discuss it with husband. Eventhough I'm not sure he'll agree. His blood pressure is normally quite low, he has AF which makes him weary of trying things that could change his heart beat even more. He does take a lot of natural orange juice and some fruit, luckily his blood sugar is low.
Sounds like you need to check the correlation between the AF and current Potassium levels. It could even be the cause - AF has everything to do with the nerves malfunctioning. Don't expect a heart doc to connect the dots .... potassium levels are not checked (or even listed) as a cause and only "heavy" medications seem to be considered. Some years ago I was "writing my ticket" because of a crazy heart, and the doc suggested radical measures - he called it "re-setting the spark plugs". Luckily I went from his rooms to get a blood test of "everything", just in case there was a simpler explanation. There was. Potassium at the lower end of "normal". It took about 40 minutes after taking some potassium tablets for my heart to start beating normally again. It makes one wonder how many people with "heart problems" are simply short of potassium like I was. The mind boggles at how stupid medical practice can sometimes be!
I agree, but also it's very difficult since everyone is so different, and medical practice is consequently based on stadistics. I will certainly get his doc to get him a potassium check and post outcome here! have a good Sunday
Lutetium treatments and my husband was surprised the medical team had not mentioned that they also require Xtandi as part of the deal. Luckily it is a drug he has considered, rejected all the rest except Provenge off label. In the US it can cost a whopping $12,000 per month if your insurance won't help. Plus you may need it forever. What a rotten depressing disease.
On the up side, the men here are simply amazing; strong, open, tough as a nails and radiating, literally, warmth!
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Long survivors with ADT + Xtandi (Enzulatamide)
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Is my husbands treatment working?
