I have had two infusions. PSA down 63% in a month, 2.02. I'm not getting another until psa goes up twice. Has anyone experience of progression, and over what period?
Lutetium 177: I have had two infusions... - Advanced Prostate...
I got my Lu-177 whilst hormone sensitive so not comparable but my onco was very keen that I added some chemo in pretty quickly after the Lu-177 to pick off any PSMA negatives. For me it was Docetaxel but a couple of Cabzataxel rounds does make sense to me to get things as low as possible. My MO goes beyond SOC and after that did give me SBRT to T9 which had reduced its SUV but not as much as the other mets. Not standard of care of course but I was happier paying for the possibility it might help than leaving it on the table and wondering if it would have helped if/ when I progressed.
Completely different place to you of course but my chemo x 3 was very doable . I was ‘iced up - head/ feet/ hands’ and lost no hair or nails and worked through. I also had the injections for white blood cells after each lot and 8 months on my white blood cells are back to normal.
Fingers crossed for you
I am also following with interest Matteo Beach who had experimental Lu-J591 in Perth with the hypothesis it may deal with the micromets.
I am in the UK so a long way from Perth and currently undetectable for 8 months but still of course aware of micromet risk so volunteered for a first in human cancer vaccine here in the UK .
Reading Matteo Beach’s profile is recommended therefore.
I was on the J591 trial in Brisbane, Aust. The side effects knocked me for six. I had clotting in the bladder, platelets dropped to 15 and ended up in hospital for 2 weeks. There were 11 others here on the trial before me and some or many ended up in hospital. The Oncologist though commented that the trial dosage was too strong. Nevertheless, the drug is working. I commenced the trial in Aug last year, with the waiting to get on it I think my PSA got up to about 100. It dropped to 63 in Dec and 48 in Feb. with scans showing favourable uptake.
AUA 2020: Comparison of Prostate-Specific Membrane Antigen-Targeted Radionuclide Therapy with Lutetium-177 via Antibody J591 vs. Small Molecule Ligand PSMA-617
Thanks, that explains a lot. With the very high incidence of adverse effects 78% from the J591 I’m not surprised I ended up in hospital. I’m surprised they’re still using it. I don’t understand why they would deliver “dose escalation”. The trial I was on was for 2 doses only. I’m glad it’s over but not looking forward to the next stage, Chemo and possible neutropenia (low white blood cells) etc etc which I went through.
thanks again, I guess the J591 is a very effective treatment but , here we go again, very high thrombocytopenia and neutropenia.
The point of this research is that the hope that this treatment is effective against micromets is shattered.
Despite of the treatment patients progressed, so I doubt micromets are taking off by this therapy.
I had 2 sessions of LU-177 years ago & it reduced the PSA from 19 to 1.6, it worked but came back in 2 years to 18.6.
At $10k a go I was thankful they would not give me a third & now am on ADT only.
What is your met load?
Without further scans I do not know, last diagnosis was just progressed to lymph nodes.
The MO just seems to be happy with the PSA reading every 3 months & I guess that is the bench mark that governs what to do & when to do it?
Seems a sensible approach. Thanks for replying.
I am on Zoladex now also & it is a welcome relief from the monthly routine of monthly injections of Firmagon but major SE of hot flushes & skin rashes & now leg pain. All lack of T I realize.
Keep on Keeping on!
I have had 3 infusions so far, no big PSA drops for me ;( The PSA almost doubled after the after my 2nd infusion.
Very interesting. Maybe it will go down after another infusion.
I hope it does. I think, I am going to have to stop after the 4th infusion at the end of the month. The toxicity in my salivary glands has become too much, if it gets any worse they said I might need a feeding tube, I cannot risk that. Shall start waiting for next revolutionary treatment to come through, if I am still around, running out of options 🙃
Did they ice your salivary glands, before, during & after infusion?
No, but I'vno problems.
Interesting, wondering why barrybayarea had so many problems? I am trying to qualify for the Eclipse trial (skip chemo & go to LU177. They say in their consent statement that they ice before, during and after infusion to protect the salivary glands.
An RN offered me an explanation, that I liked she said that my cancer load is not high enough for the radiation to attach to, so there is more free-floating radiation. When that happens, 4 things absorb the most amounts of radiation - the liver, kidneys, salivary glands, and eyes. As others said, everyone reacts differently.
There is a better explanation here by tango65
No John, they did not ice my salivary glands, I did not know that it was a thing.
I have since qualified for the Eclipse Trial & get my first infusion next week. The nurse told me that they find they don't need to ice the saliva glands, after all.
I have had 4 infusions todate. The first 2 in January 21 and PSA reduced from 50 to .65. By Jan 22 it rose to 9.9. I had another 2 infusions and PSA reduced to 4. By Jan 2023 by PSA rose to 15. My oncologist has not recommended further LU177 as he is concerned about toxicity and bone marrow issue. I start chemo tomorrow. If I dont get a good result with chemo I will have one more Lu177 and see how that goes.
Very informative. Hope chemo goes well for you.
Hope you get good results from the chemo!
Very informative post . I wish you healing and smiles xo gentle hugs and healing to all
Many thanks. There is no definitive evidence to show what is going on in the tumours, apart from them increasing over time. Some call this repopulating. Psa amounts maybe relevant. I too, would like to know what is after chemo.
I completed 6 infusion at the Dana Farber LuPSMA177 trial last year. After three infusions PSA went from 8.1 to 0.19. By the 6th infusion it had come up to 0.50. Pretty good response initially. I had Lupron and Zytiga, no chemo. All the best to you.
What was the rational in continuing after 3 infusions? I would be happy with 0.19 and stop and save up the remaining 3 for the future. I am just interested what de Dana Farber oncologists said.
At this point down the road you are probably correct in the assumption. I was enrolled with a Study Trial. The end point objective was completing all 6 infusions. Just maybe it would continue to go down.
What did the Dana Farber oncologist said why the PSA didn't drop further after 3 infusions? Actually why did it start to go up? Did they say something about it? I am just curious about the explanation of your Oncologist?
Does anyone know of any trials in the USA NJ area or anywhere that people are hearing good things about and which are less invasive to the bone marrow bc of a year of chemo , CLL low stage but multiple transfusions in one year . My dad is signed him up for lu 177 in March though his bone marrow doesn't really make him a candidate but it's what he wants . Did you go in rather strong and how were your side effects ? Also if I am clear from this post , it is the kidneys and bone marrow most at risk . What would support the kidneys .in other words herbs like dandelion I think support the kidneys . Does anyone know of other supplements that can support the kidneys to possibly avoid issues that can be taken along with the treatment. As far as caregiver needing to stay away for a few days after ,how far away and one can still be in the same room correct just not sleep next to ? Btw I think your plan is very rational and want to extend my pride in you for having taken this leap of faith . Keep us posted and may you enjoy smiles and laughter ,mobility ,and peace in your heart . Xo
You can read my posts. I've had 4 rounds that cleared up a host of Mets including a tumour on my spine that my Canadian oncologist thought needed structural repair - but it didn't clear my prostate. I had 20 rounds of IMRT to do the job. I've been on HT for 1 8 months now and have maintained 0.01 for all that time.
I have just been taken off of Lutetium treatments as the cancer is progressing despite the treatment. I was on Cabazitaxal/Carboplatin prior to getting authorization for Lutetium. The C/C treatment was slowly failing as indicated by 5-10% increases in PSA over several months to around 285. After the switch to Lutetium (Pluvicto) it looked promising next blood test w/ PSA down to 260, but next cycle rose to around 300, 3rd cycle 385 with increasing pain and mets. The mets are throughout the entire skeleton, have been for the last couple of years with some receding and some new. Cycles were 6 weeks apart. Am getting rescanned and, depending upon results, I am considered for a couple of studies. Doc is also considering Enzalutamide for a while. Anybody else have treatment experience after a Lutetium fail?
Chemo went well on friday. My current tumours are predominately in the lower part of the body - hips and back. I had several tumours on the spine about 6months ago but had them removed with radiation. They were painful, but I dont have pain with my current tumours. I have a fast moving cancer buy have survived 7 years from diagnosis. Still mobile and enjoying life.
Is that because of fear of toxicity when there is low volume of PSMA-avid metastases?
No, toxicity has not been an issue. My nuclear physician suggested that it might take psa up to six months to increase. I guess you can now call my treatment intermittent. I have an option of going on Cabzataxal but toxicity worries me. I'm paying $8, 000 (Australian) for each infusion of Lutetium. My aim is to buy time, as I have failed all other treatments. It is possible to have a few Cabazitaxal treatments, then get some more Lutetium. As I understand it there are few options left after Lutetium and Cabazitaxal.
Could you organise PSA test more often? Maybe monthly? I am not saying that you need it, but it would give you a peace of mind. I am doing it because I don't like suprise. Plus you can act earlier if your PSA starts to rise. For me it is easy as I live close to the hospital.
The nuclear physician was getting a psa test every month. I will probably get one at one month. He told me that don't be surprised if it increases. I have seven metastses 2 in spine, 4 in ribs, and one in scapula. He calls my load light. I'm expecting that notwithstanding that he said psa may not rise until 6 months it may rise slightly. The second test I will also get after a month. The doubling rate is what I must look at. Prior to the treatment it was doubling every 2 weeks. Then over a couple months it went down 63%. Remember, no one dies from psa. I want to buy time as much as possible.
Would you like to do the sbrt of your visible spine Mets with Genesis Care MRI Linac? Location Darlinghurst NSW 2010
The name of the machine is Ace and it is manufactured in Sweden by Electa Unity?
I did the SBRT of my prostate there in 5 fraction.
They give me scans after each infusion. The doctor said the spine Mets were decreasing. They can't see them in ribs. As long as psa isn't dangerous I feel safe.
Latest psa test was 2.02. I'm getting excellent treatment at Jones and Partners, Adelaide through SAMRI. THANKS FOR REPLYING.
That is great.
Hopefully you know that very soon the psma pet scan will not show all your cancer if you kill the psma positive cancer with the lutetium psma therapy and if the PSMA negative cancer repopulate the fee space?
Before the treatment I had an FDG Pet scan that showed no non- PSMA cancer. If it did, I wouldn't be allowed the Lutetium.
I am aware of that.
Just letting you know about the future possibilities. I wish you stay that way also in the future.
Many thanks for your interest.
Are you saying that pa negative cancer will replace the psma positive cancer ? Is this a sure thing and what do studies suggest about pain possibly coming from mets in spine and longevity . Also after lu 177 are there other non chemo options once one has gone straight through the normal protocal in standard order ? Would BAT therapy be an option ? Are there any other options in the horizon ? Tysm
I don't know.
Good questiond. I just know that with the cancer everything is possible. I have to see your location.
I have a same problem finding the information for myself. I have an oncologist and until know goes everything really well for me.
You should find a good doctor and ask him your questions. I believe I am just lucky. We all need good luck with the cancer.
I believe the most important is to make good treatment decisions.
For me BAT could be probably a bad decision but maybe for you a good decision. We don't really know. I personally believe that it will probably not extend life but could improve quality of life.
As far as I know they will treat you with Lutetium as long as you have more PSMA expressing cancer than not-expressing cancer. Should Lutetium no longer work, you can get Cabazitaxel instead.
I think that is a dangerous comment you have pointed out before. My Nuclear Medicine doctor was the target of this subject you broach about PSMA negative cancer. She looked at me and smiled and commented...you do not have negative PSMA cancer. This was backed by a Harvard oncologist . I think you if you want to continue putting these ideas into peoples head you should suggest that they ask their physicians. I have read other post in the past. I assume you get your information from a blog, or trial which is not recognized discipline wide. Any physician can have a view point or a treatment that is somewhat unique, lets say Tagawa, but it is up to Tagawa to explain his paradigm to each patient and not a layman who's regurgitation may scare people. Tall Allen ( whom I respect) will acknowledge I believe that we share certain common points in our disease however we all seem to have a unique slant. I had head and neck cancer HPV+, the physicians were very confident of a cure factor for a number of reasons. Not so with this stuff....Blue Sky
You are 100% correct. Everyone should make any treatment decisions at their own risk.
Of course you should have a doctor. This forum should prepare you to ask him questions.
But ultimately you are responsible for your health and you should know what could go wrong and find out the answers from your doctor.
I also remember you. Good luck with your treatment decisions.
Could you try to use heat against your Mets? I would in your situation limit lutetium psma treatment and deploy heat and SBRT.
You will be surprised with the effect on your PSA.
You should avoid not just toxicity but also save up the lutetium for later if you can.
The number of lutetium infusions are more less limited in your lifetime to 6 because of the cumulative side effects on your kidneys. Your glomerular filtration rate could drop and you may require hemodialysis machine. That will be much more expensive.
It is great that you had 2 infusions. Try to combine it with high precision sbrt and heat plus cabazytaxel in order to avoid possible repopulation with PSMA negative cancer. The scans don't always pick up everything. Better to be safe.
SBRT isn't an option because too many mets and I have already had that treatment on two previous mets on the spine. That was the advice of a radiation expert. If heat was recommended by studies I would consider that.
You are doing well just keep the brakes on. It is a dangerous journey.
You can always ask for second opinion from professor Hofman at PeterMac.
I wish you luck.
Thanks for your comments.
I am happy to give you.
What is sbrt and heat and what if you already did too much chemo ( ten months every three weeks stage one trial ?)
Did your Dad do well on that chemo. I’m just asking you personally how you think it helped your Dad or did not? You are such a caring daughter, always trying your best to do the right thing for your Dad.
I had six cycles of LU-177 last year. PSA went from 65 in August '21 to 1.79 after the last treatment in March '22. For the next three months, it went down to .064. Then, in July last year, it started rising. In October it had reach 4.8, and now, as of 1/27/23, it is at 38.56.
I would not stop taking it--I'd do all 6 treatments asap. Get that PSA under 1!
Now, I'm trying to get another regimen of Pluvicto, rather than chemo. My entire LU-177 experience is documented in the healingwell forum under Steve55777. Best of luck, brother. Steve
I'm not a big fan of saving therapies for later. The astounding survival increases we've seen for earlier use convinced me that diminishing the tumor load as early as possible has the greatest effect. However, Pluvicto may cause excess toxicity when the tumor load is low.
Thank you for this comment. I'm guided by a nuclear specialist.
Pluvicto is the same as lu177? If not how do they choose which one . Tysm
No. Lu177 is just the radioactive part of the molecule - it's the part that kills the cancer cell with beta radiation. The other part of the molecule is the part (called the ligand) that finds and latches onto PSMA on the cancer cell. For Pluvicto, the ligand is called PSMA-617. But there are other ligands in clinical trials for PCa that use Lu177 (e.g., PSMA-I&T, J591, PNT2002).
Lu177 is used for other cancers; e.g., Lu177-DOTATATE or Lutathera is approved for GI neuroendocrine cancers.
Some experimental radiopharmaceuticals do not use Lu177 at all. Some use Ac225 or Cu64, for example.
To avoid confusion about what it is you're referring to, it's best to call it Pluvicto.
A great explanation.
Very interesting. Thanks
TA - much better answer than I had given!!!