I have recently had my second Lu-177 treatment 2 weeks ago & experienced side effects like coughing up blood from an ulcer i havnt heard from in 20 years & next day had heart pains,not indigestion either & now very stiff shoulder joints. My eyes are bloodshot & not from drinking,used to love going to the gym.
Has anybody out there experienced this sort of thing? My first LU-177 had excellent results, no side effects, psa from 20 to 1.9 so they said to go again & nock it out but the heart pains were a worry,i mean what will i dye from?
Blood test in 2 weeks time & GA68 pet scan in 3 weeks followed by ONC appointment so will update after that.
I might add they gave me a script for stomach upsets,metocopraiyide ?10mg but after 4 months of ADT i am not a big fan of taking drugs i do not know.
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Thanks Nal, i always read your posts & was going to ask you about Birm. I received shipment from Guadalupe salvador via ebay & it is in Spanish i think. So is it 2mils every 12hrs, Tomar 2ml cada 12 horas,con comidas on the box. Does it reduce tumors or what is it best used for?
I suspect that the drug prescribed for you was "Metoclopramide". If you search for that on Google you'll find lots of info about the drug, including the full analysis in the FDA required drug label. A good site is here: medlineplus.gov/druginfo/me...
It does have potentially serious side effects but I don't know how many people get them.
Thanks Alan, i did not take the drug prescribed but on reading it is for the side effects i had from the LU-177 treatment, but it has side effects also. i will stick with the supplements for now & think hard on a third treatment. Thanks again
I live here in Australia & on the bottle & box it says; Composicion; cada 2ml de solucion oral contienen: Dulcamara(solanium dulcamara L) extracto de raiz y talio; 0.4g Excipientes c.s.... BIRM Immunomodulador.
Please let your doctor know all the supplements you are taking. It's hard for me to believe you would take any while undergoing treatment with a radioactive substance. Your reaction may be due to interactions.
My supplements only include tumeric,krill oil & occasional vit k2 or saw palmetto, it really stops going to toilet 4 times a night. These seem harmless enough & after the LU-177 i forgot to take anything anyway. Still trying to work the BIRM out & will only take if the results are not good,as in a psa of 0.1.
Thanks for the reply TA,always appreciate input on this. I finished with ADT & searched for treatments with less side effects.
Yes i have to agree reading that but i thought the krill oil was helping the arthritis in the shoulders,if that what it was & the saw palmetto really works for me,nothing worse than getting out of bed 4 times a night for a pee then try to go back to sleep.
But you and I don't know enough to do that kind of thinking in substitution for the treating Doc.
In fact it would seem a little unfair to the Doc to withhold that information from him/her. They know, or should know the biochemical pathways. They have the basis to form intuitions on combinations likely to get you into trouble, and those unlikely to get you into trouble.
Even if they are lazy and mercenary and just don't want to be bothered with the information, I think you should go out of the way to confront them with it and insist on an opinion.
I can remember asking the question about supplements before the second infusion & the reply was; it is a waste of money as you will only pee it out. I was asking about cell salts at the time.
Yes it is a script that relaxes the muscle in the prostate so i think you would want to pee more? & have you read the possible side effects? dizzy spells etc.Saw palmetto,none & it works,for me anyway.
When I suffered from BPH years ago I tried using saw palmetto. I needed the flomax. It doesn't make you want to pee more often -- it helps the bladder empty more completely such that you have fewer trips to the bathroom. Ultimately I needed the TURP surgery and my only regret was that I didn't have it done sooner.
My brother had Lu PSMA treatment last year in Sydney. Two injections. Got rid of all but one of his 30 plus Ca spots. His PSA dropped to near zero until 3 months back, when it spiked up to near 10. Then 19. Recent PSMA Pet scan shows many new Ca spots. He had another injection 2 weeks ago and re-started Xtandi. Both occasions only side effect was dry mouth/saliva reduction and general fatigue.
He is presently on a 4 week NZ/South Pacific cruise and enjoying himself.
The issue with PSMA Pet scans is they don't see microscopic PCa when the PSA is low - thus false sense of security perhaps.
My brother tells me all the doctors at Theranostics are very approachable and give extensive guidance, whilst recognising that RCT results are still not in.
Yes i agree they are very helpful at Theranostics & i have heard that before after the second infusion it nocks it but it comes back. I dont do chemo or ADT now but have to start deciding soon.
I'm back in Canberra after going to Sydney last thursday for No 2 Lu177 last Friday. Side effects have been only high HR for 24 hrs, aches in hips and neck and 1 shoulder, all places I have Pca lesions in bones.
I agree about the possibility of having Psa go low, then coming back up, and basically, the Lu177 de-bulks the total cancer load where it can, and where mets are tiny, and too small to show up in PsMa Ga68 scans, there may not be enough Lu177 attracted for long enough to do anything to stop the growth of such small mets. OK, so later you will need more Lu177 when they get bigger.
But just how the Lu177 works when it gets into a big bone lesion has never been explained to me, but it seems bone mets begin in the internal part of bones that have a good blood supply to to the bone matrix containing marrow
that is kind of like a hardened sort of foam. The outer bone surface is like a kind of fibrous organic stone, able to take compression and tension stresses well. But as the Pca becomes established, it converts the bone into mush as it
increases its diameter and finally breaks down the hard out bone surface so you get holes in the bone surface and lumps of cancer matter that may interfere with surfaces of bones in a joint, and I know two where this seems to have happened, and soon they may become bedridden because they can't walk, sit, stand or move, but can do everything else, which often is not much.
Its possible the Lu177 is taken to the bone mets via blood vessels but only in enough quanity to attack the cells at the start volume of the met, and maybe cannot reach the attack front of the met, which keeps growing, or is not much affected. I see that quite a few variables in Lu177 delivery mode will exist at the met, so patient outcomes will be different.
4 x doses of Lu177 over 4 x 8week periods is standard treatment, but response is judged along the way, and I'll get judged in 4 weeks to see what's happening after 2 doses.
If Psa trends down to say 1.0, docs might say its no use having more Lu177 because there may not be enough PsMa avidity to attract the ligand which tows the Lu177 into Pca met.
So better to let the met grow bigger to become a target they can hit, and new mets that become big enough to hit will be reduced.
But if there are thousands of tiny mets there would be a limit on how many times you could have Lu177 due to accumulated side effects. I know a man who has had 7 doses, and he says he might need a "top-up" in future, and maybe he's a lucky one if that holds back his Pca progress.
There is no predictable outcome ahead for me, or for anyone on Lu177, and its gambling time.
I heard there is a trial of Lu177 PLUS Ketruda beginning later this month at Peter Mac in Melbourne. This has the promise of whacking the Pca harder because the Lu177 weakens the Pca ability to "hide from" the body's immune system. But the Lu177 weakens the immune system but researchers think if they boost the immune system with Keytruda it will allow the immune system to see the Pca trying to hard, and thus hook into it and kill it.
Meanwhile in US there is Checkmate trial of taking Iplilmumab and Nivolumab together to work on immune system but so far my doc says mean extension of time is only 5 months.
But a man here did post he had a fabulous Psa reduction with this therapy, and a similar thing seems to happen with Provenge that has 4month life extension, but some fellows have had 9 years, because immune system reproduces altered white cells which keep working for years.
Results at Marsden Hospital in UK are also getting a mix of good or bad results, some getting remission while others don't respond or have bad side effects with altered immune system cells attacking healthy cells.
All my docs realize that Pca is one very hard disease to cure.
Maybe I last long enough for something magical to appear, and to be therapy I can buy, but there is nothing yet, and I am only delaying my Pca progress, and it is mutating as time goes by.
My doc also said that use of Ra223, Zofigo, is risky because you can end up with much higher risk of bone fractures because Ra replaces Ca where there is Ca being cycled in-out of bones. This occurs at mets, and radioactive Ra kills the Pca causing the high Ca traffic. But one guy in another group said he had 6 Ra infusions, and was doing OK but that was months back and we don't know how he is now.
Meanwhile, I'll ride my bicycle as far as Aunty Destiny allows me to.
HIFU: it is a heattreatment, the heat being delivered by ultrasound, just Googe for HIFU. My Gleason was 9 at diagnosis (Jan. 2014)and the stage T3a which means that the tumor had escaped.
The two Lu treatments (Un Marburg, Germany) cost together 16000 €, all in. The last one was two months ago.
I just finished two Lu treatments, but my psa only slightly reduced from 3,6 to 2,7. Maybe my low psa doubling time of 2 years caused the limited succes.
But I did not have any side effects, the day after each of the two treatments I could do my usual gym exercises.
I have (still small) bone mets and my only treatment before the Lu was a HIFU four and a half years ago.
I just had Lu177 No 2, and Psa seems to just be starting to go down from 25 before No 1 Lu177.
Side effects are slight dry mouth and soreness under ears and lower jaw, and some slight aches in bones where i know there are mets. I expect these will fade down as radioactivity reduces. The volumes of lesions where Lu177 gathers becomes like a molecular bombsite with dead Pca cells plus dead healthy cells, and I guess if someone had lung mets they might bleed from lung until the lesions begin to slowly heal, depending on the available healing ability of the patient, which might vary a lot between one man and another depending on age and fitness factors etc. My resting HR was 46 before No 2 Lu177, because I had cycled 960km during 3 previous weeks. I am fir for age 71. But in 24 hours after Lu177, HR went up to 68, but has now come back down to 46.
I was tired, so I slept, but I have not had need to take predisinolone yet to lower inflamation at places where Lu177 has aggravated.
I've had ADT since 2010. I cycle just as fast as other men of 71 men who have a full bottle of testostorone and no Pca. I have no idea for how long I can remain active and exercize hard. But your response of Psa from 20 to 1.9 is an excellent result, and you might consider having more time between the last Lu177 inject and the next; as long as you have PsMa avidity and PsMa Ga68 scans show up where mets are, then Lu177 is going to be effective. But the lower the Psa, the lower the PsMa so there ois less uptake of Lu177, so the dose might be reduced, because your uptake of Lu177 becomes lower.
Therfore there should be less side effects except that saliva and tear glands will uptake Lu177 and become damaged permanently, maybe.
Some men have had up to 10 Lu177 injects; I know one who has has 7.
Over time, let us hope your side effects diminish.
It is presently impossible to predict exactly what you might die from because Pca progress cannot ever be predcted easily or accurately, but many of us would envy your Psa of only 1.9.
Thanks Patrick,i remember reading your story. You say your HR went down,what is that please,psa level? or heart rate? i was having heart pains on the first day after & wondered if i was going to wake up. Left shoulder very sore & stiff so might be where it is but the scan will show soon.
I am now returned from 3 day stay in Sydney getting Lu177 No 2 last Friday. My resting HR has become a normal 46, ie, that's the heart beats per minute while I type to you about it. But its 46 and lower than for most ppl who have maybe 65, and who don't do much exercize.
I cycled 960km in 3 weeks before last Sunday. During each ride my HR might increase to maybe 120, and I am breathing hard and in pain with lactic acid while riding up yet another steep. Its the repeated stessing of all my body that makes it respond by trying to get stronger for the next ride. Thus each ride toughens me up. A state of equilibrium is reahed where although my body tries to get stronger and faster, it is limited by getting older, and maybe by any health condition. But up to right now I have become able to average 25kph over 80km cycle rides in urban areas
and all despite having no testosterone due to ADT, and stage 4 Pca.
Nobody older than 50 ever overtakes me when I am out on bike, so my body is effectively younger than anyone my age who has not decided to live like a dedicated athlete, but nevertheless like one who is not an extremist.
There are a few extremists around, they cycle futher, and go faster, but these are the few freaks who get all the sporting trophies after beating us ordinary plodders with poor athletic genes like myself.
I live in small city, Canberra, with the best cycling facilities in Australia, so there's a low and negligible risk of me dying in accidents with motor vehicles.
I had No 2 Lu177 last Friday, 48 hours ago, and went home by train to my sisters's flat where I stayed, and I felt a bit tired, so I slept 3 hours in afternoon and HR went to 68, and stayed there for 24 hours but its now back to 46 after a good long sleep last night. I had aches in a shoulder, cervical spine and right hip joint where bones involved have large enough mets to become inflammed by Lu177 getting into met and causing mahem to spoil the cancer party going on and this causes inflamation, but its not enough to make me take pain killers or take any prednisolone, so now I am feeling a lot better, and able to ride bike a few km to cafe, and maybe do some serious rides of 60km+ later this coming week. There has been no nausea, I can eat well and enjoy it. There was a slight dry mouth but now its fine.
I have some soreness of areas below ears to bellow jaw on each side, but just pressing both sides with hands for 10 seconds eases the pains, and probably is enough to squeeze out inflamation liquids accumulated there and alllow blood refreshment to flow in, and thus help remove accumulated LU177 from saliva glands. It follows the general rule that where somewhere aches on your body, its a benefit to gently massage it.
I am 71, and have accumulated osteo arthritis, but not enough to keep me off bike.
Psa just before Lu177 no 1 was 25, then 5 weeks later its 25, then 2 more weeks later and just before no 2 Lu177 it was 21, so maybe trending down
so its not zooming up, and maybe I am winning a reprieve from Pca progress but I dare not count the chickens before they hatch.
My Doc says many come to Lu177 expecting a cure but they could only ever buy time, and extended QOL, and I agreed, and said I was happy he was able to attempt to privide that for me.
My doc said he thinks a cure may be found but Pca has been one of the most difficult cancers to deal with. There is a new trial for Lu177 due to begin at Peter Mac in Melbourne next month with Lu177 combined with Keytruda, an immune system boosting drug.
So far, so good. I will eat a happy sandwitch at lunchtime.
But I know some guys who are not responding well to their treatments,
and I can only hope they can manage that with courage.
Thanks for the input patrick.The pain in my left shoulder must be just as you say,a bone met & the LU-177 is fighting it, a doctors report that started my treatment mentioned involvement in 2 lymph nodes & left side of neck so it makes sence that is what is going on. Will keep you all informed as i go for another GA68 scan soon.
Bad stiffness & soreness, thats me at the moment but over the nausea. I n Australia they advertise a thing on tv that you put on the sore part & press button three times,that actually works but not for long. Might be arthritis but why just after LU-177 shot?
in my area lu-177 isn't offered and from what i found its mostly over seas. in nov of this year it will be 11 years for me and with a psa of 38 totally happy in one sense but have found 2 new spots in my back so no pain etc
7 years for me now Charlie & i could not handle side effects of ADT so found this wonderful site & the LU-177 treatment. If your pain becomes worse you might consider travel to Europe or Australia?
I’ve had 3 LU177 PSMA injections and like you have very stiff joints almost like. I have found the more I move the better. I also still have some nausea and did crack a rib during one episode.
But my PSA dropped from 110 to 1.0 after my second injection. And I should have a PSA test later this week. Hang in there I think the effects are worth the results.
Thanks for the encouragment jackpine. They say the pain is the lu-177 attacking the cancer so i have to wate for psa readings. How on earth did you crack a rib? I have one also but came of a horse years ago.
Agree the pain from LU 177 can be bad, It knocked me back for almost 2 weeks the first injection. I cracked my rib vomiting so hard it cracked. I’ve had some bad nausea but on the mend now. Here’s to kicking the crap out of this disease at least for a while
agree also, the side effects are worth the end results & if only they could be permanent results. I have the worst cold or pnemonia i have ever had & ended up in hospital but could be just run down.
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