Coming up on third LU177 PSMA - Advanced Prostate...

Advanced Prostate Cancer
10,546 members12,585 posts

Coming up on third LU177 PSMA

Jackpine
Jackpine

I’ll be having my third LU177 injection week and looking forward to seeing my results.

The fatigue and nausea after number 2 were much reduced and very tolerable. While my bone scan showed I still look like a Christmas tree the larger lesions are significantly reduced. I did have a lowering of my hemoglobin initially but lots of greens and a daily vitamin have brought it back up.

I’ll have a PET scan, PSA and injection this week, and will keep everyone posted of results.

47 Replies
oldestnewest
Hidden
Hidden

Where are you getting the LU177 treatments? I just took my dad last week to meet a Dr in Omaha for a second opinion that is doing a trial on LU177. Only thing that makes me hesitant is that getting the LU177 is not guaranteed. We also have to see if he even qualifies for the trial with the PSMA scan.

I am receiving treatment at the Mayo and am part of the same study in Omaha. To me if you can get in the study you will be told if you are receiving LU177 or standard care and you can pull out of the study at any time. In my case I’ve exhausted most other treatments so having a 66% chance of receiving the LU177 I was all in. I’m having the most positive results vs any past treatment so I’m pleased. I know results will very by individual but I think worth trying to get in the trial.

Ldb01
Ldb01
in reply to Jackpine

Are the trials still open ? We are in South Africa and I have written to and called the University if Pretoria with my husband’s case. No response as yet. Waiting for Zytiga.

Jackpine
Jackpine
in reply to Ldb01

Lab,

The trial is still accepting people depending on the location. I believe there are 6 sites in the US ( Mayo Clinic, Omaha, UCLA, are ones I’m aware of. I believe there are locations in Europe as well.

Ldb01
Ldb01
in reply to Jackpine

Thanks just did the entire form and it threw me out...uuurgh. Will try again on another location.

Thanks for sharing your experience on the Vision trial. My husband was just selected to participate in Omaha. Any advice for preventing side effects? They mentioned doing ice packs on the jaw to help with dry mouth. Thx

tango65
tango65
in reply to CJ4J

I had Lu 177 in Germany in 2016. I did not have any side effects, except for fatigue the first day after the infusion. They made me use ice packs for about 10 hours after the infusion. The ice packs were applied over the parotid salivary glands and the sub-maxillary salivary glands. The following days I had to suck and chew some lemon mints to stimulate the production of saliva. It did work and I did not have any problems with my salivary glands.

paulparry
paulparry
in reply to tango65

I assume it was private?

How many sessions did you have?

How was travel and accommodation booking?

Jackpine
Jackpine
in reply to paulparry

Paul,

I am part of a drug trial so drug cost is being covered. I’ll have 4 injections.

Whimpy-p
Whimpy-p
in reply to Jackpine

That’s pretty good stuff. Thinking it’s going to work..

tango65
tango65
in reply to paulparry

I arranged the treatment directly with the doctors and the hospital. I booked my travel and lodging in Munich.

I required only one treatment. After the 1st treatment I had a Ga 68 PSMA PET/CT and the nodes in pelvis and abdomen were negative for radiation,so the second treatment was cancelled.

Jackpine
Jackpine
in reply to tango65

I love to hear those types of success for this treatment!!

Thanks for that update

Jackpine
Jackpine
in reply to CJ4J

CJ4J,

On the side effects I had severe fatique for about 3 days but I know some people have little to moderate fatique. Nausea was moderate for me.

Do the ice packs as they can really help, I keep them on for about and hour before the injection and then 4 hours after. I have not had and salivary gland issues.

I wish you well with this treatment ! If you have any other questions just let me know.

Thank you so much for your up-dates--And I would expect that reduction of Mets would occur with the larger ones first--this would be normal medical science. Keep hanging in there.

Nalakrats

Jackpine
Jackpine
in reply to Nalakrats

Nalakrats,

Thank you for your insight and support it is so much appreciated! I have come to have a great amount of respect you and the brothers in this fight! The collective knowledge and insight on research has been very helpful in having treatment options with my OC.

Have a Wonderful Christmas!

Good to hear! My husband is in the same study at Mayo and just had the second treatment. He has had almost no side effects and bone pain is starting to improve. Did your psa spike after treatment. My husband's doubled after his first but they are thinking it's because of the dead cells circulating in his bloodstream.

Hope it all goes well for you on number 3!!

Jackpine
Jackpine
in reply to Carmen2

Carmen,

My PSA dropped the first weeks but spiked the next week and then continued to drop each week after. I think this is a great treatment that is showing lots of promise for us receiving treatment.

Is your husband seeing Dr. Kwon?

Carmen2
Carmen2
in reply to Jackpine

Yes. He has been a patient of Dr Kwon's since 2014. We feel very lucky to have found him as we live in a somewhat remote area where treatment options are limited. Can't say enough good stuff about Dr Kwon.

We are very hopeful that this treatment is working. It's pretty unnerving to see your PSA climb rapidly. PSA was about 3 in Aug and peaked at 18.7! Had his pet scan in Nov prior to the second treatment and it is not showing any new bone mets. It finally started to drop a little about a week before his second treatment. Now it is one the rise again after the second treatment.

I absolutely agree the this treatment looks like a game changer. It's like chemo without the side effects. Hopefully it will get FDA approval quickly so more guys can get it.

Best of luck on number 3!!!

Jackpine
Jackpine
in reply to Carmen2

Thanks Carmen,

I agree Dr Kwon is a great oncologist and I love that he is unconventional and will throw everything he can at this disease. We live in the country of Northern Wi so we too had very limited options.

Hope your husband does well on the treatment!

Hope you have a wonderful Christmas!

Carmen2
Carmen2
in reply to Jackpine

Many Thanks. We are so grateful to have

time with our great granddaughters and grandchildren and children this Christmas. Blessings to you and yours this Christmas.

The_Don5
The_Don5
in reply to Carmen2

we also experienced a fairly substantial increase in psa after first treatment.

Good luck to you and the others in the trial. Thanks for sharing.

I am due for No 2 Lu177 on 4 Jan 2019, not long now.

No major side effects so far, and No 1 was only 4 weeks after last of 5 chemo shots, so chemo side effects have been slow to lessen.

Psa before Lu177 was 25, and has stayed the same for 5 weeks, but to be expected.

No more scans for me yet, but I guess there will be some soon. I will watch out for more posts from Jackpine.

I each huge bowls of salads with many greens, and I cycled 280km last week.

Patrick Turner

Good going Patrick, I wonder if your exercise regimen helps reduce the side effects, maybe by building your immune system?

I've cycled 135,000km since mid 2006, and I have no idea if it led to less rapid progress of my Pca, diagnosed too late in Dec 2009, Psa 6.0, Gleason 9, with 9 positive biop samples. Doc tried to do open surgery in April 2010, but found too much Pca had come out and around capsule, obscuring what he might have done, so no RP. No spread was found but for Gleason score 9, well above 6, a lot of mets had probably formed which could not yet be seen. OK, I was well poxed up, but it was a long chronic disease I had, and the castration with ADT and other treats never made me depressed or angry because it was Nature taking its course, and whatever I did or doctors did was most likely yo only delay the inevitable. There are so few men who post to groups who have no troubles after an RP, or have remission for say 5 years for some other reason, one being their Pca is a real wussy thing, easily killed by treatments such as chemo which may have almost no effect on many other men with Pca.

I see into the eyes of my inner enemy, but before it conquers me I'll serve it up a meal of Atomic Poison, and meanwhile I enjoy my uber simple life of tinkering in shed with electronic stuff, cycling as much as my body will enjoy, dine out each lunchtime, joke with waitresses I'd have liked to marry about 45 years ago, not weigh down the few friends I have, enjoy about 4 hours a week on the few good TV shows on free-to-air and I marvel at how little I want to buy, consume, or worry about. I have no power or desire to change the world because it mostly is very determined to make a lot of mistakes I would not have made.

I am serene about not having had a wife for long, I did never need to have kids. I worked my guts out in building trades for low contract prices because I probably don't know how to negotiate ruthlessly. So I owe nobody anything, was never sued or jailed, and have no debts. I am well set up for my last years, and would hate to travel where I would see the struggling masses and see the symbols of past vanities of mankind, and while doing that I'd be so alone, spending too much, and it just ain't my style or scene.

I'm happiest on my bike, but also enjoy classical music, which is rarely performed in my little city that repels the ambitious youngsters who seek fame in bigger cities. So I much like ABC Classic FM radio, where they play a better choice of music than I could ever find myself. Naturally, I don't need a mobile phone, and I loathed being at Facebook; I felt social media was bad for me, and few ever wanted a 1:1 friendship. Here, with ppl who have an enemy in common with mine, I feel OK, a natural place to be.

So notice wonderment around you, don't be too serious,

Patrick Turner.

Well said Patrick.

Enjoyed reading that Patrick... good words. Helps me think about the mindset I need going forward as I've transitioned from what I thought was great health to having a slow progressing, terminal disease. It's hard to grasp in the three months since I learned I've got PC. I'm also very active in sports, and will try to keep doing the things I've always done to stay healthy. It's just mind-bending to think how this little organ, the prostate, can affect a man's later years when it's really not needed that much. I'm slowing grasping this new state of existence, and the only thing to do is just "keep on keeping on", as my old football coach used to say.

For many years before my Pca diagnosis I had seen many ppl secumb to other cancers and maladies, and by 55 I thought "when will my turn come" and I didn't have to wait too long. I know a man who has so far

survived 25 years after diagnosis and another who might not survive much longer following diagnosis about 3.5 years ago. Doctors and myself have never had any idea how long I had.

So damn what? At one fancy big hospital I asked one doc why men could not get an RP BEFORE any sign or suspicion of Pca is seen. He said its the one type of operation he could never sell to men.

If Angelina Jollie could have both breasts off BEFORE risking getting Bca, ( and end up with a good pair of mellons after the plastic surgery ) then why can't a man have his Nuisance Gland removed before any Pca? One would think that would be easy because they should be able to preserve all nerves, so the bloke does not have ED or incontinence, and there'd be no ADT so he'd remain The Full Man providing of course he gives up the smokes, grog, all sugar, and the booze, and learns to love properly, and avoid much of the usual bullshit which us men get accused of.

BTW, despite lots of radiation I have no incontinence. But the ADT exterminated all sex function and not the slightest pleasure can be had.

Duzzen Madder, because there have been no ladies in my life for last 20 years. A working Rodger is not a necessity.

Most blokes avoid any commitment to the Revolution Of Body and Mind that IMHO must be undertaken before its too late. Mine happened at about 59, after 12 years off the bike due to bad knees and i'd put on 20Kg to be 102Kg, and I became disgusted with myself. But a doc gave me a double knee arthroscopy in 2005 which reduced the pain I had had for years in my knees, not from building work, but because of genetics I got from my dear mother. My father gave me a slight ability and zest for physical activity, but I was so lucky not to inherit his terrible temper.

Anyway, in 2006, I cleaned up the bikes I used to race on in 1980s and 90s, and off I went, and I quickly regained strength and speed and weight went down to 83Kg in 6 months and I was nearly as fast as I was at 41. I hardly ever won any races against the guys who were 300% natural athletes who had one bedroom in their house just to keep all the trophies they'd won since age 14. I was the plodder, and liked the really long 100km+ races which the sprint merchants loathed.

But in 2006, I had no urge to race, but I did join a local cycling group and maybe 20 of us would cycle 150km for the Sunday, and I could keep up with most of them. I'd changed my diet to being more strict in avoiding junk food.

But in 2009, along came the Pca which I'd probably had since 2005, and the RP was abandoned after opening me, too much cancer, and I was directed to radiation and ADT. It was an "Ah shit moment" but my natural response was to keep cycling until I could not. The Revolution evolved to consider myself a permanent athlete. I used to like a bottle of shiraz each fortnight, but then something in brain just said "don't need that either" and then "no red meat". And before getting both knees replaced Feb 2017 I found all meat, including chicken made my bones ache, so NO meat of any kind. Eggs and fish seemed OK, but I handled getting new knees very well, and I felt born again.

I do not want a Maserati, I'd rather have a bicycle. There is so much in this world I do not desire. Less is more, OK. And sometimes I think what I do desire will never happen, but there are many things we cannot control, we don't get a choice.

Early this year the abiraterone failed, then chemo seemed to fail, and now I am on Lu177, ie, Atomic Warfare. Psa was 25 before it, then 25 at 5 weeks after first, and I have no idea if Psa will go down and met size in scans are seen to reduce.

But today I cycled 96km. So 76km across town for a coffee, including a slow winding hilly route back home, then a swim, then 5 km to lunch at cafe No 2, and then 15km to/from a doc who injected some cortizone to a cyst on a tendon in one hand. I have more cysts on other tendons, but they are are not so sore, but all are a side effect of a lifetime building or making stuff with my hands. I love craft work, but the God Of Craft is telling me "no, you may not..." It was 30C when I got home but I felt very well apart from the slight discomfort of being 71.

And this morning I met a nurse I'd known from my times at the local public hospital, and she's on her way to work, and had stopped at the cafe across town, and what a beautiful nice lady she is! - There is a bit of the day's wonderment ! Later the lady at the clinic for injection saw me sweating buckets and fetched me a towel while I waited, yet another angel to behold. Rather than complain, try to count your blessings....

Patrick Turner.

Congrats Patrick, biking 96km is a great day! And congrats for overcoming bad knees and two replacements, that's awesome, to then go on with your biking, and lose the weight, which is real hard to do in middle age, PC or not.

I've been the active type too, since high school. Now I run 4 miles on alternate days, and mix in swimming, stationary bike, and tennis the other days. I will be going on ADT for the first time soon, and hoping I can manage to push through the fatigue that comes with it. I remember trying Propecia for hair loss about 15 years ago, and it made me so tired after a week I stopped it. So I'm dreading to see what affect ADT has to my energy levels.

I've turned vegan since September when I got the bad news, and I'm still adjusting to no red meat and milk. I'm eating well, and have lost 8 lbs from 150 to 142, too much I think, but have eliminated all sugars and heavy carbs, and trying to stay keto to starve that damn tumor. Also, doing my activities in the middle of the day to get some natural vit D. Just hoping every little bit helps to keep this disease from spreading too much.

Let's hope this diet and exercise helps us fight the fight and deal with treatment side-effects and keep a passion for doing what we love.

Hi timotur,

If you run 14km a week average, its like cycling 100km .Maybe more.

But I never stopped cycling due to fatigue, and during all these treatments I kept to busy to get tired or need a nap.

Gee, 142lbs is only 65Kg, so tou are light. I'm 82Kg right now, but Iam also 184cms, so BMI is 24.2 and waist is 95cm, so weight is not my concern, and resting HR is a steady 46, so a heart problem is unlikely during long climbs up hills on bike where HR may stay at max for 15 minutes. If your HR recovers by night, heart is usually fine.

Keto may have a slight effect. Hard starvation may not work much because Pca usually has such a small demand for blood glucose, unlike other faster growing cancers. Many blokes respond to Pca by change to full athlete diet / exercise program but its often not anywhere near enough to kill Pca. I am athlete because I enjoy it, and don't enjoy the basically neurotic lifestyle of so many ppl around me. Many think I'm neurotic and strange, and I could not care less about their concerns.

I can ride 96km, they all cannot.

Patrick Turner.

Hi Patrick, yes, I'm only 175cm, so yes, lean, good for running, but don't want to get too lean with ADP coming up. To keep strength, I do a set of barbell routines about 3x week, and on run days, I stop at a pull-up bar and do 3x8 pull-ups. I also have a small prostate, only 27ml, so it will be a good target for brachy tx.

In my readings, tumors love sugar, so my goal with keto is to eat less often (hence keep insulin low), and cut out sugars which raises insulin. We'll see if it helps. In my limited testing, my PSA since Sept only went up from 24-29, so that's a doubling rate of over a year, so this diet change may be slowing it down, not sure.

Do you live in Europe? Sounds like you have good bike paths to be able to ride 100km a day. I lived in Germany back in the 90's and rode a bike to work every day 6km each way. Bike paths were great, except for the day I hit black ice, and broke a couple of ribs!

It does not matter how lean you get unless you over-do it. ADT may tend to make men fatter because absense of testo makes muscles shrivel and fat uptake increase unless of course you keep up the exercize and the discipline to avoid the diets eaten by most ppl around you.

If a woman without much testo can cycle faster than me then you can too. I can now average 25kph for 30km across town with plenty hills and stops at road crossings, and ater some lasting effects from chemo. But with full testo along same route I could average 28kph at age 62 before beginning ADT when testo level was midrange for men. The health benefits of exercize are greater on ADT than when you have full testo.

I met another bloke in another group who is a fanatic about keto dieting, and says his very low Psa is due to diet, and ketosis action you mention. But I asked what figures supported his ideas, and he's never given me any reference to read except one which grossly overstated tumour uptake of glucose, and which was not related to Pca which for most men takes at least 3 years to grow to kill him. I spoke to a researcher at Australian National University who was searching for ways to prevent cancer cells taking in glucose, A newspaper article mentioned him, and from that I tracked down his email address and after 3 emails it seemed certain that its a Holy Grail part of research to stop glucose uptake by any cells, because anyone who does this can sell pills for dieting and allow ppl to eat eaven more garbage without getting fat, and billions of $$$$ are to be made by greedy arsole companies selling anti-sugar pills and food companies selling even more junk food.

Our species needs to tighten its belt, but we have become neurotic eaters, drinkers and consumers of way too much of everything.

I cannot tell what effect my diet has on rate of Psa rise, but after Zytiga failed the rate increased alarmingly and after first chemo it tripled in 3 weeks; docs said a flare effect, and it was the Beast rearing up and growling at me. and Psa leveled at 27, then went up to 45 after 5 chemos, and Psa SHOULD Have Gone Down, and because it damn well did not, 2 docs said it was not working. Well, maybe the bone mets continued to grow but soft tissue mets reduced, because chemo seems to work more on soft tissue mets, eg lymph nodes.

But switch to Lu177 has not spoiled my chance of Lu177 being effective, because where I have mets that are PsMa avid, it will work.

I'm in small regional city of Canberra within state of NSW in Australia and there are about 400,000ppl. We have had the benefit of the city being designed after 1920 to attract ppl away from coastal cities, and its the ONLY place I can do 100km all on hot mis sealed "shared paths" aka cycle paths or cycle lanes on roads. Sydney is a killer for cyclists because so much was designed to cram ppl in during days of horse and carts.

Melbourne is not much better, and even with the best cycle paths here in Australia only 2.7% cycle to work, mainly blokes under 40.

But where new suburbs are springing up like musrooms the planners include good path extensions as they go. For suburbs more than 5km away from city centres the road cycling is good because roads are mostly wide enough, and not very crowded with traffic. It ain't like Mumbai or Jakarta etc, and although we get 100 frosts a year here, the coldest city in Oz, we rarely get icy roads becaise the cold -5C we get does not linger all day so I can safely cycle all year long, even early on a -4C morning which has been rare, and does me no good, but is essential if a doc appoint time is 9am, and hospital is 18km away. But I get hot under the long lycra on such days.

So far so good, and after 135,000 km after 2006 to now, no bad falls off my bike, but many others are just not so quick witted to see the gravel or sand or where a driver is going to go in next second, so they have more falls.

I raced on bikes in late 1980s, early 90s, and fell twice with hands out to "catch Earth a comin at me at 35kph" and both times I had a very sore shoulder for a few days, and the falls affected one then other shoulder and all pain vanished and I felt like I was balanced; same trauma on both sides, and NO typical broken collar bone. I have thick bone size, and I cannot get middle finger to touch thumb if I wrap them round a wrist in smallest size and I saw blokes made with much thinner bone which they broke much more easily; but these thin boned athletes could dance on the pedals up hills way ahead of me so I was always disadvantaged by having heavy bones and higher fat% content,

so although I did about 200 races over 6 years in club, I never won, like most of the others, because although there were A, B, C, D.and E grades for "veterans", if you got a couple of wins in Cgrade they put you into B grade where a win was rare, and the A graders could all go faster than any B grader. But handicap road races were where I had a chance. I would not race on the local velodrome which was a horrid concrete bowl with no roof, and rough concrete all built by glorified amateurs.

I also hated criteriums, then using car parks not used on Sundays.

I was only ever a medium time trialist and I never could get my "age standard" at 40 which was about 1:00 for 40.0km on a mainly flat highway course. So I have always known my limitations. But on one early Feb morning in 2008, at 61, I did 52km in 1.5 hours at 32.6kph which WAS just better than age standard for 50km, and the course had hills. But the records for cycling trials showed there were 80 year olds who could equal my time on a flat course.

Soon after 2008, the controllers of cycling in UK changed all the standards because blokes between 40 and 70 were going faster than when age standards were listed in about 1940. Better roads, better lighter bikes, men not smoking and boozing and more health fanatics were cycling, and better clingy lycra clothing and better position for speed on specially made bike. But in most road races the winners of time trials rarely won because they got out-sprinted in the last 100M. If I had $1 for each time some little light fast sprinter beat me over the line and who'd ridden behind me for most of a race, I'd be rich.

Today I did a "recovery ride" around 22km in suburb streets and paths, in less than an hour. Tomorra morning I get a blood test because of concern over platelet levels, maybe caused by me not taking prednisolone after Lu177 because I saw no need. But smal cuts have stopped bleeding in small time as ever before, so doc's concern is being a bit too cautious, but hey, better than having a doc who ignores so much....

The doc giving me Lu177 said I had not come to LU177 with Psa too low. Many will come when Psa is high, and maybe they get worse outcomes.

Many early patients in trials of Lu177 had Psa > 100 and very poor prospect of much more life, some would have died within 3 months.

Some had nearly all mets on scans vanish, and a major life extension, but results of first Lu177 trial in Oz in 2016 are still being considered. One bloke has had 7 x Lu177 injects, and was OK when I spoke to him 3 months ago. There is another larger blind trial of Cabizataxel vs Lu177 going on in Oz now, and I expect results next year. But the clinic selling me Lu177 has done hundreds of patients since they began 3 years ago so they know how effective it is and maybe they know more than researchers know.

Oz blokes have similar Pca rates and Pca DNA as does Germany and USA and UK etc, so there was enough known about Lu177 to allow me to make a fairly well informed decision.

Patrick Turner.

Good stuff Patrick, you're near a professional level biker. I have some friends at your level, and I've noticed bikers are some of the most avid about their sport. Your lucky to live in such a bike friendly town. I loved that about Germany, but here in the US, you're pretty much on your own. No national laws like in Germany giving bikers 1.5 meter space. I've had three biker friends break collar bones, and one killed at Lake Tahoe trying to pass a truck on a downhill. So it can be very dangerous as you know.

I've been to your great country. I did the backpack tour back in the late 90's, from Sydney up to Cairns-- great place, friendly fun-loving people, great sense of humor. I stayed at Backpacker Inns for AUD$5/night, what a deal. Scuba'd the Great Barrier, saw all kinds of things that can kill you, and played tennis on grass at the Brisbane National Tennis Center. Didn't make it to Canberra, but heard good things about it. Wine country too, I think.

Good to hear the meds haven't slowed you down. Going forward, I'll be interested in reading your experience with Lu177. Very good to hear you're tolerant of the drugs and can do your workouts-- inspiring! I've not taken as much as an aspirin in recent years, so this will be all new.

For awhile I rely on luck. I don't want to have to have Radium 223 for bone mets.

Canberra does make some good wines but not regarded as good as the best from South Australia, but then let us be sensible about wine, its basic plonk, and many cannot tell any difference between a rare old bottle of shiraz costing $2,000, and one costing $20. Certainly not after 3 glasses. I gave it up in 2014 when a glass with a meal made me a bit maudlin, and the classical music was not enhanced, but now I am happy happy at night at with Mozart, or maybe Stravinski et all, and a big salad, and later with a plate of sliced tomatoes and a red pepper, dash of olive oil and rock salt.

I've rarely travelled, too much humble and cheap wonderment where I am.

Canberra is Australia's National Capitol city where the National Parliament argues relentlessly over SFA most days and to detriment of people's will, so there is a pall of brown bullshit air over the place, and has led to wine experts saying its impossible to make a good tasting wine from such bad airs. Tourist agencies are not profitable because most tourists are young, and get bored enough here to describe it as The Most Boring Place On Earth, and imigrants don't like it much either. Oh what a blessing it is that so many downgrade the place before trying it out, and may they stay well away lest they clutter the roads with cars bad driving skills, and endless whinges about existence, while making

the place congested and toxic like Sydney.

In 5 minutes, I ride out to can see horses and cows in paddocks.

The cows all moo at me happily, knowing I don't want to eat any one of them.

BTW, I was never cycling at a professional level. Thats for boys under 35, and they'll cycle 1,000km a week to train and races are only possible if you are a human freak. Like the Paris to Roubaix, a hell of a race with lots of cobble stones that shake your teeth out.

There's a big artificial puddle near House of Parliament, Lake Burley Griffin, named after a yank and his missus won a design competion for the city in about 1920. It damps down the Brown Smell of BS, and develops a pong of its own during summers in out droubts when wtater turns green, and kills all swimmers, except the carp, which are introduced pest fish, just like the Pollys in Parliament. It would be good to drain the lake once in a while but the bad policies have drained down into lake, and formed a toxic sludge that must not be disturbed. But under Commonwealth Avenue Bridge across the lake, you might find many gold rings under bridge, put their when angst riddled husbands have thrown them after a wife departed. There are no locks of love on the bridge handrails, but there is a roped on life bouy ring in the middle, ever since a drunken Irish tourist who normally cannot be depressed, decided on a swim when the bars closed, Of course it gets stolen repeatedly.

We care for every one here :-)

Must now turn to Vikings now on tele.

Patrick Turner.

why no radium 223?

At the time I made the post to which you now reply, Ra223 would not have done anything to stop the mets in lymph nodes.

But since 5 months ago I've had 4 x Lu177, and Psa has moved down from 25 to 4, and afaik, mets in soft tissues are very low level and level in bones is much reduced. But maybe in time the docs offer me Ra223 if bone mets are still active, especially if they do not express much PsMa in the PsMa Ga 68 scans, but show up better in other scans.

It ain't over yet.

Patrick Turner.

Hello Patrick-Turner, I am also having my second treatment on the 4th at McQuarrie. May see you there.

Hi bosely,

Well how about that! I am due at 9:30 am and afaik, they must start early because they might keep you there for 4+ hours after the Lu177 infusion to make sure the radioactivity level has subsided enough to make it safe to be close to other ppl. I guess I will definitely see you there.

How did your first Lu177 go?

Patrick Turner.

Almost no side effects. Slight nausea first day controlled by a light snack and tiredness for 10 days solved by an afternoon nap.

I had trouble trying to define my Lu177 side effects. It was cool spring weather, and I kept cycling every day from 2 days after the infusion. I'll be in the heat of summer this time. I'm hoping for best. I'll look out for you in a week's time.

All the best,

Patrick Turner.

Hi Jackpine,

Thanks for posting the encouraging news. I'm glad that the treatment has been working for you so far.

I guess you needed to get a PSMA scan. Is that correct? Where did you get the scan? Thank you.

Jackpine
Jackpine
in reply to Quyen

Quyen,

I did get my PSMA scan in Houston. I thin that is currently the only location offering it currently. I know the Mayo is setting up to do the test as well.

kiskadog
kiskadog
in reply to Jackpine

I had my GA68 PSMA scan done at UCSF in San Francisco Medicare paid for the scan but I had to pay for the GA68 infusion, a little less than $1000.

Do 68Ga and DCFPyL qualify? Both are labeled PSMA. If so, UCLA, UCSF, Michigan and I think MSKCC are currently doing 68Ga and Stanford just finished phase 1 of DCFPyL. Phoenix Molecular Imaging is awaiting approval for phase 2 of 68Ga. They don't know if they'll get it next week or in a month, but think that they're close.

The Best of luck to you Jackpine...

hi jack was initial lowering of haemogloblin down to lu 177?

Jackpine
Jackpine
in reply to The_Don5

Don,

They haven’t really said why my hemoglobin low but I’m guessing the large number of bone Mets had something to do with it and I was low on B12. It it still low 11.3 mg/dL so it is coming up slowly

You may also like...