PSA on the incline again. Scans show mets increasing on right side of pelvis (right side was clear a year ago) and a new spot on ninth rib. Nothing seems to work or work for very long. And lupron induced depression and fatigue doesn't help. Why dont they just remove the rib or the portion with cancer? Why leave it so it can spread to lung?
Lynparza has failed: PSA on the incline... - Advanced Prostate...
Lynparza has failed
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Lombardi24
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I hey Bill,
I just this morning posted a similar post... as already, after just 6 months on Xtandi....my PSA has risen 3 times. I keep reading about the new parp Inhibitors and other things on the horizon ...and holding on. Sounds like you are really in the best place to get the best treatment. I finally requested the gene mapping.
I'm sending lots of positive vibes and a big long distance hug.
Comrade John
Thx John
P.S. I just got my 3 month lupron on Friday and I'm feeling it big time today. I find it gets better a week or so in.
Just got mine on thurs
the first couple of weeks after the shot...it's hard for me NOT to be Debbie downer....I have a hard time not spending time curled in fetal position in bed. Just gotta keep moving...and get through it.
hope you feel better soon.
John
Thx John
GJ,
try indomethacin...can reverse resistance to Xtandi and Zytiga..also can prevent intra-tumoral production of T on its own. Google Indomethacin/Xtandi
I have not read about anything that reverses the resistance to Xtandi or Zytiga, ie makes these drugs suppress tumour growth for longer than they do, ie, mean time of 8 months. If there was anything that was known to work, then would not we all know about it?
Google says indomethacin is a drug for gout pain and arthritis etc.
I've got countless bone mets. There is probably no point trying to remove the bone to remove the cancer; If docs did this I'd be a real mess.
So its Lu177 for me now and it is 17 days since 2nd Lu177 infusion, and sore spots in 5 bone areas have ceased being sore. Worst was R hip because Pca is in head of femur as well as pelvis so hip joint got sore, inflamed. But that's now gone, and I cycled 20km, and in 37C heat. I worked all morning putting up a steel fence, part of a mend-the-fences program I have at my house. So despite all this stage 4 cancer stuff and continuing ADT, I really ain't very crook. It could all change fast, as I have seen in others whose cancer did not respond well to RP, EBRT, ADT, chemo or PARP inhibitors.
I can get wheel chair ramps installed, renovate 2 bedrooms for a live in carer if I wanted, so if my life falls apart then I might at least be able to enjoy being cared about by somebody or other.
Patrick Turner.
Wow Patrick. Cycling. I havent rodents my bike since this all started 4 yrs ago. I walk on the treadmill mostly
Hi Lombardi24,
I can't stand treadmills or gyms. I need to be outside in the world under the sky, cycle between trees, cycle near rivers and lakes, bid the birds hello as I pass, see the farms and animals, feel the seasons...….and enjoy the struggle up hills to a crest and the exhilaration of speed down hills, thus connecting to my inner free animal nature.
Patrick Turner.
I very much agree with you. My long walks near the sea are giving me life. Note the breeze on the face and hear the sea.
Go outside, have a coffee, a long walk.
I stopped riding due to pain in my pelvis
I could get Pca pain at any time soon and then be forced off the bike, maybe prevented from walking, might need a wheelchair; but there are ppl who survive happily for a long time in a wheelchair, so if I was confined to one, I'd probably join a discussion group where ppl shared wheelchair existence. Make the best of life.
Patrick Turner.
why don't u try radiation on the bones, then there is provenge as will
charlie
I am having radiation to my bones, with Lu177. It does not work as fast as some other nuclides such as Actinium225, but the side effects of Lu are less than Ac. Trials of Lu177 are still going on here in Australia but one company Theranostics Australia is allowed to just do it, and I am getting it from them. The trials have shown 70% of men get a benefit, ie, lower psa and less total cancer, and German trials established extension to life was a mean time of 14 months with 4 infusions. Some men have had 7 infusions, and in Germany one man at least has had 10 infusions.
I saw the bone scans of a patient in our trials here in a video and he had months to live with far more Pca load than I have. His mets basically vanished, pain ceased, he was up out of bed. But of course that was the good case, 30% did not fare so well. Now there's a trial of Lu177 with added keytruda which is immune therapy that works fairly well on other cancers like melanoma. The idea is that the Lu177 stresses the Pca so much it somehow causes a chemical change that prevents it hiding from white cells of immune system. Cancer grows because the immune system does not see the cancer cells as the enemy rogues like it sees many other things, or the cancer grows faster than the immune system can ever handle. Most Pca is slow growing, and when an immune system can see it as an enemy, game over for the cancer.
Now Provenge is also another IT that has been around for 10 years, but the % of patients who get a benefit seems to be low because mean life extension is only 4 months, and it is hugely expensive. There are men who have had 9 years added to life so far, but they are a minority. It seems that these guys have white cells which reproduce with cancer fighting ability but some guys are not so lucky, and the fighting stops after the treatment.
Marsden Hospital in UK is having low success rates with IT, only 15% I saw last year, so it may never be approved. Marsden said there were big troubles with altering white cells to fight cancer because sometimes the altered cells attacked healthy cells of the body, causing organ failure etc.
The biochemistry involved is hugely complex, and Pca in any one man can be an assortment of mutations that don't all respond the IT.
But if the tumours all are PsMa avid, the Lu177 of Ac225 will be drawn to those locations and kill all mutant forms if that is where they are. The problem with LU177 etc is that if the Pca is not PsMa avid, then it does not show up on PsMa Ga68 scans and the Lu177 or Ac225 is not attracted to and gather at met sites so it does not work. There are men who have Pca that makes very low Psa or none at all and the Pca is not PsMa avid, and their cancer is much harder to image of treat and prognosis is usually worse.
I think I am getting the best of what is readily available here in Australia. If the trials of Lu177+ketruda are a success, and if I live long enough to get it, then maybe it is available in years ahead. I have lived long enough with Pca to get Zytiga. I really don't know what lies ahead.
But its now 30 days since No2 Lu177 infusion. I will have scans and blood tests soon to see what is going on in bones and soft tissues. A decision will be made about whether its worth continuing or just wait and see for awhile. It seems to me that if Psa went very low, and PsMa Ga68 scans show big reduction of tumours then having another shot of Lu177 soon might be pointless because there is not much PsMa avidity to attract more Lu177 to met sites. I may be better off waiting for Pca to grow back a bit before more Lu177 is given. Pca is a bit like having a bad bunch of weeds on your farm. Its almost impossible to eradicate this weed, but maybe it can be kept under control. The problem is that a body differs from a farm and bone mets leave a permanent weakening to their structure. I have so may small mets that use of IMRT would be silly right now. If I had only 3 bone mets, IMRT might be an option, especially if they were very painful, but with many small mets the only option is systemic treatment - all mets have to be treated. The theranostic Lu177 is targeted, the Lu177 circulates around body but gathers at mets, so its the breakthrough. It could not be used without the targeting due a chemical added to the radioactive solution of lutetium chloride.
Unfortunately, it does not seem that chemo has been able to be made to only gather at tumour sites. Chemo is toxic to many cells all over body, especially fast dividing cells. Docetaxel is a very primitive Pca treatment and my onco told me it would not work for me very well, and it did not.
This morning I was on my bike at 7am and rode 48km, first longish ride since last Lu177 a month ago. I will continue to try to increase speed and distance and see what happens. In 3 weeks leading up to No2 Lu177, I cycled 960km.
I worked hard all last week helping a contractor build a new fence at my house, and the fact is that right now, I am not very sick, and fairly well.
But I have no idea how long this will last.
Weather here in Canberra was 39C today and 40C tomorrow, heat wave No3, and we have February and March to get through. I don't have any air con, and am surviving quite well with only fans, as I always have. One town in South Australia had 49C yesterday, and many others have had over 40C for weeks. Its all part of Global Warming, too much CO2.
Patrick Turner.
so how much is the lu-77 its hard to get here in the us most European residence can get it over seas but it's hard for most us citizens.
charlie
Hi charles,
Lu177 is available here in Australia from Theranostics Australia in Perth or Sydney for about $6,900 for each infusion. PsMa Ga68 PET+CT scans cost about usd $560. I heard another place in Brisbane is doing Lu177, but Google will tell you all you need to know and the contact method etc. Although Aus has a good Medicare rebate system there is no rebate for Lu177 yet, and you pay it all, so my 4 shots will be about usd $27,600.
I have to pay 1/2 for each shot before and then after each shot.
I did meet a guy from New Zealand who was getting Lu177 on same day I got mine. There are air fares, accommodation, so its all expensive.
Patrick Turner.
i had a provenge test and its 72,000 paid 0. zytiga per month is 10,600 i paid nothing. the problem is it not here offered in the usa or its not close so i do without like alot of men
charlie
Have had radiation and doc said provenge is not an option. Am trying to qualify for a trial.
GJ,
what is your opinion of Provenge
Gus
well....I got through it. The removal of blood (3 times) was NOT a piece of cake, but was always done and I didn't have to have a port put in. The afternoons after taking blood out and putting it back in were "in bed in fetal position" times.....but I'm hopeful that it will offer long term gains. The nurses at the clinic where it was done told me amazing stories from people who had done it and 7 years later were coming back to do it again...and had great results. Time will tell.
gee my only problem until i watched tv it was the most boring time 3 hrs for taking it out. i did have a port put in me but since i bathe it wasn't a problem taking baths. never had to get into a fetal position just moved on until they took it out.
charlie
I was talking about the afternoon AFTER having the procedure done....both extraction and the return of the plasma....those afternoons I did NOT feel good.
During the procedure ....getting those needles in was a nightmare...and NOT moving a 1/4" for 3 hours was tough, but physically it wasn't that hard. The needles make a difference in how one would remember the extraction days....and I suppose the experience is different for everyone.
The big thing is ....RESULTS ! ! !
Let's hope we both see good ones!
thats why i went with a port. they are big needles for veins to take plus as the port put in i was put asleep for the procedure isn't a problem doing the basic things and no more sticking it is in,and forgotten till they come out.
I wanted to avoid the port as long as I could...but I do think you're right. The needles were huge.
J.
i didn't want the needle due to beeing quiet for 4 hrs they told me then it went to 2 1/2s. lucky for me they said my veins were to small and i was happy. they put me to sleep and put it in, they wrapped it very good and was able to take a tub bath. now this is going thru cancer nw up here. when i went to have the port taken out my doc said why did they say u couldn't shower and he said that was BS, among other things but i didn't care it was done and with the treatment. u can ask for a port it was the blood bank who made the decision on needle or port but i have no idea if they would refuse u to go for the port. mind was up by the shoulder blade.
charlie
They offered. I refused.
I am g9 psa 203 in 2015 multiple distant bone mets, my initial treatment was Lupron and Taxotere Psa went down to .2 and then up slowly over next year with new mets and new lung nodules.
I had Provenge In November 2016 my psa was 1.4 now it is .7
During the 3 treatments I had my 12 liters of blood taken out on Friday and then on Monday had the refined blood cells put back in. Every time I had the treatment I felt much better on Wednesday after. So it has been good for me so far.
Being hooked up to a machine for four hours is insane but you get use to it, I would do it again. I have been on Lupron for 3 years. When fighting cancer I need to remember to keep my since of humor, but even more important an attitude to kick ass, be aggressive and take no prisoners. (not physically I'm on Lupron).
Larry E
My onc stated that provenge would not be an option
u know provenge won't lower your psa much, and all it does for u is build up ones resistance to the cancer make u happy and hopefully feel good. that's all
charlie
You are right, that is exactly what my doctor at MD Anderson told me.
if u have had the orivenge treatment the nurses have liad about the blood change over . its done 1x only. they tryed to do it a few more times and it did nothing for ones cancer. remember this treatment doesn't heal u its to build up ones resistance and help ones psa a little. remember there is no cure for pcancer, none.
CHARLIE
I know insurance only will pay once. The man they mentioned was self-pay. They said a very wealthy man from out of the country. I'm hoping for a big boost from the one time ...and soon ! ! !
i had it 3 months ago. all i was told its to build ones immune system, might lower ones psa some. its goal is to make u feel better and live a'lot longer feeling better. me at this time i feel the same no worst but most docs do feel its good.
charlie
Many trials out there...have you taken a look at NCI match trial-??----free gene mapping if you haven't had it and placed in a trial based on genotyping...
Good luck,
Fish
Thank you.
what the hell does gene mapping do for someone.
charlie
They take your cancer, find out what mutation(s) are involved--(gene mapping), and then put you in a study arm that is aimed at those mutation(s)....
ok
Good Sunday to you Bill. Like you, I have been resistant to all past treatments. I am currently on a combo trial of Olaparib (Lynparza) and Cediranib. I had to accept this combination or no trial. The Cediranib caused horrible gastrointestinal problems, so my MO took me off for a week and now started a lower dose. The thing is Bill, like you I have fought and am fighting the good fight. I have accepted whatever happens to me. I'm done asking why?
Ralph
I cant accept it.
I pray for you and other brothers I've gotten to know through this community every night. I'm at peace with myself. I pray there's something down the road that's going to click for you Bill.
Thx Ralphie.
It spreads whether they remove the rib or not. It's in your blood and your tissue:
healthunlocked.com/advanced...
they can radiate it in the ribs ,they did mine on a couple of lumph nodes so i would think a rib wouldn't be a problem
charlie
No - it depends where. The heart and other vital organs are very sensitive to radiation. No one knows if radiating a bone met accomplishes anything.
Hi Tall A,
Maybe it depends on what sort of radiation. Lu177 has had remarkable effect on bone mets for many men, but it is beta radiation, targeted, and travels short distance. Also Ac225 and Ra223.
IMRT and EBRT is just X-rays, and they travel long distance and through healthy tissue which make side effects.
At the local public ( free ) hospital here they give EBRT to guys with bone pain and it gives a result, but maybe not give much increased overall survival time.
my gf had her shoulder radiated so i would think a rib when i talk to my 2nd opinion i will see for u and other locations of lymph's as will
charlie
Well that just adds to my depression. Than why bother living if it's going to kill you anyway and death from it is agonizing?
Please see Gus Gold reply above. Indomethacin has had positive results for him and might for you also. Sorry you are so down; it's a horrible disease. Best wishes. Jim
Thx Jim
I used to be depressed until one day I said those 3 famous words "Awww Fuck It"... Now I laugh at my Pca...
Good Luck, Good Health and Good Humor.
j-o-h-n Monday 01/21/2019 12:48 AM EST
Thx john
Love this, I’m going to show to my husband. It’s pretty freeing. I’m in sales and I always say to my partner can we do that? He said we can do what ever the F we want we’re over 50! I just laughed and have had such a freeing mindset since he said that. So I can’t but think it is a great mindset for the nasty old C word. Thanks John!
Kim, Mel’s wife
dude i'm on my 11year so i don't look at it if it will. heart attacks kill, bad drivers, seizures and strokes kill so don't worry. sure if u make it to the 90s like a neighbors dad it did, he was 90+ ended up with a 2000 psa who cares u will die of something when u get that old, most likely a heart attack or as they say natural causes. relax
charlie
they can radiate the rib my ex-gf had cancer from her breasts cancer they radiated it and put some paste to make it grow back and she lived another 10 years
charlie
Brutha we are all dying the day we are born. Whether it’s tomorrow or In 80 years we will all meet our demise sooner or later. The answer to “why bother living” is to enjoy today and after today to enjoy tomorrow. As opposed to wasting today worrying about tomorrow. Do the things you love and enjoy the ones you love. Fight the fight for as many tomorrow’s as you can get. You will know when the time to stop fighting is. I don’t think that time has come yet for you. Almost everyone here is in a similar situation to yours - some a little better and some a little worse. But most of us try and stay positive , excercise and enjoy and be grateful for whatever time we have. I pray you can learn to do that or you will waste the precious time you have left my friend.
Schwah.
"Why dont they just remove the rib or the portion with cancer? Why leave it so it can spread to lung?"
The last time I had a Ga-68 PSMA PET scan that showed about 6-7 active areas in my bones, I also had anxieties about them, and frequently just wished they could be "fixed" in some whack-a-mole fashion. After a while, I reconciled myself that there were just too many, in my case, and I probably still needed those various bones more than I hated the idea of having the active cancer in them.
My guess is that removing that rib or part of that rib might cause undue trauma for minimal systemic benefit? And messing with ribs - even for bone biopsies - might risk collateral damage or lung/pleural cavity punctures or leakage?
The last time I looked at some detailed anatomy charts it seemed that the blood supply to and from the ribs themselves ran through smaller arteries and veins that stayed within the thoracic wall, and ran along the bottom inside of each rib, with small artery connections from the extended large aorta in front of the spine for red blood going to ribs, and with return veins that went back along the same ribs to go back to the heart via the vena cava route. The various existing tissues layers of the thoracic wall act as barriers to other tissue growths, too.
By contrast, the blood supply to the lungs, themselves, come directly from major arteries and veins running directly to and from the heart. If some kind of cells from "mets" in a rib were sloughed off into general blood circulation, they could be as likely to travel anywhere else into general circulation as to lung tissues. (One of the very rough early attempts to describe possible metastatic spread of cancer involved "seed and soil" metaphors, with the details of why/how particular cancer cells might find ways to "root" and/or establish necessary cell signaling / blood supply methods to grow into detectable "mets" elsewhere largely a mystery.) (What lymph nodes connect to ribs and the thoracic wall may be a bit less clear cut.)
If it were I, I think I'd try to keep the rib and the large pelvic bone and avoid surgery, unless I were getting strong medical advice to do otherwise. If those bones should become painfully symptomatic, perhaps ask about palliative radiation or some other systemic treatment.
Just some thoughts.
Charles
when they feel its time they can radiated the rib. how long have u been fighting pcancer?
charlie
5 years
Very sorry to hear your news. I’ve had Olaparib, and it just didn’t work - despite the fact that I’m BRAC2 and they were almost certain it would. I’ve also had a rib met that was initially quite small, and they wouldn’t hear of removing it - until it had spread so much that I’ve had to have three ribs and some spine removed over two operations. It’s bloody frustrating, to say the least, but you just have to keep going. It isn’t fair, but these are the cards we’ve been dealt and nothing is going to change that. When I was first diagnosed, I had daughters who were so young I just wanted to stay around until they knew me. Now, I just want to stay around to see them married etc. I have loads of really crap days, feeling sorry for myself, but you can never give up. You just gave to keep taking one step forward. You just have to. Who knows what’s around the corner? Good luck buddy.
HopingForTheBest1 in reply to
I am also BRCA2 positive, and expect a PARP inhibitor in my near term future. MO is suggesting Olaparib at some point. Very sorry to hear it didn't work for you. Would going on a different PARP be an option for you?
I absolutely agree to never give up. So much research is now going on for our condition. I hope and pray that viable options will be available for us sooner than later.
Doc says we're done with Parps.
Are you Brca 2 in germline or somatic (tumor)
I'm not sure
Actually ...tumor. they biopsied one of the tumors to check
That is somatic Brca mutation. It may be also Germaine but you must check blood.
Lombardi24 in reply to
Thx hiC
I was mapped - first at the Royal Marsden in Sutton, then by Ros Reels’ genetic team at the Royal Marsden in Fulham Road. BRAC2. My oncologist was involved in the trial that produced the results that got everyone so excited - so he really thought it would work with me. I guess the trial involved fairly small numbers and it worked beautifully for a couple of guys. If you’re lucky, you’ll get the same result, but it doesn’t always work out. If you are offered it, I would absolutely give it a go. After all, what have you got to lose? You might be one if those guys. Combinations are also worth a try. For me, probably PSMA targeting next. Good luck to everyone, whatever treatment path you’re on.
Lombardi24 in reply to
That is next for me. PSMA targeting
Hope things will level off for you. Sometimes it is quite difficult.
Thx wdoug
I had a bone biopsy done. Found BRCA mutation. It worked initially, but no longer. Possibly a Lutetium trial...randomized so I may not get the drug. Have to be tested for PSMA first.
Been in your place. I wont lie it's hard to get out. If need be see a counselor.
all lupron does is reduce your testosterone that's it. there are zytiga and later PROVENGEW treatment so be patient your doc will set up another treatment for u
charlie
Sending Positive thoughts and prayers your way brother !!!
Thx redbank
I'm so deeply sorry for your pain and depression Bill. Depression is a dark world without cancer.....I can't imagine what you're feeling. I just hope and pray a treatment will work or a miracle will happen. Sending huge Bear (((HUGS))) and all of my optimism.
💗🤗Jackie
Thx Jackie
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