My husband sadly has been taken off the Vision trial after only 2 Lutetium 177 treatments as scans have shown that his cancer has spread. Has anyone else had the same misfortune?
Lutetium failed: My husband sadly has... - Advanced Prostate...
Lutetium failed
Written by
ellyras
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45 Replies
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The trial sponsor usually does a PSMA scan (expensive and sometimes involving travel) to be sure the patient has a strong PSMA expression which usually means the LU-177 will be effective...Did your husband have this scan performed ? But even so, for reasons not fully understood, about 40% of the patients have disappointing results.. I am just starting the trial and travel to Scottsdale for the PSMA scan next week..Wish me luck...
Of course he had a PSMA scan and was a textbook subject for the trial, so it is heartbreaking and disappointing for it to fail after only 2 cycles. Thank you for your thoughts. He is being considered for a phase 1 trial.
Best of luck with the scan and the treatment. The treatment is very well tolerated. I had it in 2016. I had some fatigue lasting less than 24 hours.
• in reply toFairwind
Good Luck! On our way to the airport right now, headed to Germany
detlefsandra• in reply to
hi my dear whre are you going to?
I'm very sorry to hear of the failure of the treatment. Unfortunately, like all the other treatments, Lu-177 works spectacularly for some patients but not at all for some others. I presume that the doctors tested for the presence of PSMA in his tumors before trying the treatment, but I guess he must have had a lot of cancer that didn't express PSMA in addition to the tumors that did.
One purpose of a clinical trial is to learn more about the treatment in the trial. Who benefits from it? Who doesn't? Are there more factors that can distinguish these two outcomes in advance, before the treatment? I wish that your husband's treatment had worked but, since it didn't, I hope that the doctors at least learned from the failure and will be able to do better after the trials are complete. Your experience may still be of benefit to future patients.
Thank you for participating in the trial. I hope that some other treatment will be more effective.
I wish you both all the best.
Alan
I would check for neuroendocrine cancer. Could be an explanation for the treatment failures you had.
Yes, unfortunately there have been several reported failures on this site. In trials so far, some men respond very well, but there are always some who have no response.
We are learning that PSMA expression is highly varied within an individual's tumors, between his tumors, and from individual to individual; so any therapy that depends entirely on PSMA expression is going to work better for some than others. It is not a cure, of course. Sometimes, there is a known effect of cancers that removing some but not all of a given tumor may allow the remaining cancer in the tumor to grow even faster.
For men with only osteoblastic bone mets, Xofigo may be a better choice.
That’s a very interesting observation TA. What’s your understanding of just how monophenotypic blastic forms may be. I asked my Onc on my final visit about it and he maintained no one is completely so....I don’t know where he got that empirical evidence and never thought to question it.
Probably bone mets are blastic in about 95% of men with PC bone mets.
So I take it your research and experience has led you to this conclusion. its a big deal for me as it has tremendous implication in ctc metastasis....imo. hypothetically marrow involvement can become a factory in such and create a time bomb situation in any with marrow mets. In fact taken to a logical conclusion with a 5% risk....should we not all go through marrow ablation on commencement of any treatment and undergo a (purified) transplant after remission. Radical but perhaps a very effective adjunct. whats the point of heavy treating drinking water downstream of a leaking sewer.
Hi Tall Allen
I always watch your posts
All of you actually
I read that you commented on a drug where the lower dose given had better results in some of those trialled
My husband now on enzalutamide after failing cosudex and chemo
Side effects too severe with the full 160mg dose , so recently reduced to 120mg
Maybe we’ll see better results next appointment???
He had PSA done after first three months and it had only dropped two points
The Onco seemed disappointed
So now we go back in August with the reduced dose
Any thoughts ???
It is so hard to wait, but what choice do we have?
My husband was in the Vision Trial -Houston branch. He had 4 treatments with the scans remaining stable. However, his psa continued to rise. Our oncologist recommended he have his psa checked prior to the 6 week mark and 5th infusion...it had gone up over 100 points. He advised quitting the trial and going on Jevtana. Unfortunately, his psa is still rising. What phase 1 trial is your husband now considering. My hubby has tried all standard care offers to no avail.
We are meeting the phase 1 trial team next week but for now we have no idea what they are considering....
You say you were advised to quit the trial. In our case we were not given that option. I remember at the time we discussed Lutetium with our consultant said that Lutetium is not the wonder drug that everyone thinks and that it doesn't work for everyone. I guess we are the unlucky ones.
It's important to have reasonable expectations. Our best medicines extend survival by 3-5 months when taken at the end of all other treatments. Our best medicines extend survival by about 1.5 years when taken by those who are newly diagnosed as metastatic. We are thrilled by any medicine that is effective in that range. Many of those meds are palliative as well.
Sorry to know. My father has been in the same boat too, after 2 cycles his disease showed progression in the comparative PSMA scans. His Platelet counts has been adversely affected ever since and never made it back to anywhere even close to normal.
I hope and wish the doctors can work out the best possible treatment plan for your husband going forward.
Healing prayers and light.... Bless you.
I had my first Lu-177 infusion on the 23rd of April. My PSA before the infusion was 16. Today (21st June) about 2 months later, it is 33.80, more than doubled. The PSMA PET CT scan I took on the 1st of June, indicated disease progression.
I have met with several MO's and the consensus of opinion is to do the second infusion on the 2nd of July. The reason given is that it is too soon to write off Lu-177 as a failure.
I have therefore reluctantly agreed to do the second infusion on the 2nd of July. It will cost me approx US$ 5000/- all told, including the blood tests and the PSMA PET CT scan thereafter.
An important point to note is that 15 days after the Lu-177 infusion, I have begun to get severe pains where the lesions are. In the skull, neck, lungs, back, spine, thighs, etc, etc.
Usually, an ULTRACET eases the pain for 6/8 hours, then pain again and another ULTRACET. So, on and on. At least, the ultracet works, for now.
Its been not even 16 months since I began treatment and at this stage, quite frankly, it appears I do not have too much time left to live (if this is called living).
Cheers everyone !! Que Sera Sera !!
Indeed, Whatsin. I admire your quality of coupling unerring and logical reality with an immense tenacity. I am pulling for you, friend.
• in reply toSeosamhM
Me too! Thanks for keeping us updated during this very difficult time.
whatsinaname• in reply to
Thank you, 8knots. Yes, things are very difficult, to say the least. I will handle this as best I can. Thanks again.
Adding my thoughts and positive energy to what Seosamh said!
-Sunlight
Don't lose hope quite yet Whatsin your MO's will keep you alive as long as you still have the money to pay their fees. In all honesty I feel that the only thing I am currently capable of doing is generating fees for my doctors to collect, and as you said, not really what one would call "living".
As far as your pain you might want to try a 12 hour extended release twice daily as an alternative, given the right dose it does make things easier taking less pills daily, and break-through pain medication can be taken if needed. And if I may add, it sounds like your pain might be associated with the dying of cancer cells in your lesions, it was explained to me that one will experience pain as the lesions die from treatment as well as experience pain as the bones heal themselves... just my 2 cents but something for you to consider.
Realizing that we only have so many bullets to fight this beast with have you considered Xtandi, Cabazitaxel, Carboplatin, Xofigo, etc, etc?, it seems way too early for you to be thinking about how much time you may have left, and rather you should be looking to see what is still possible, after all the future's not ours to see. Again just my 2 cents. Best S.
Thank you, SsamO.
I am beginning to doubt the capability of my "doctors" to keep me alive although it benefits them enormously to do so. They just don't seem to have adequate knowledge though all/most of them are US degree holders with 5/10/15 years of work experience in the US behind them.
Yes, I too was told that the pain I am experiencing is because the lesions are being killed. Its been two months now since my first infusion on the 23rd of April.
Thank you for your advice on pain medication. I am considering doing just that.
Yes, I know that Xtandi and Cabazitaxel are still weapons that can be used. But, I have doubts as to their efficacy on me. I will definitely go for them, if there is no choice.
Thank you, SsamO, for your concern, empathy and advice. I am truly obliged.
The Vision trial researcher told us that as long as the scans do not show progression, we should continue the LU 177 infusions. Scans were the first criteria and PSA the second. And that it can take 2-3 infusions before it shows improvement. I met one woman whose husband's psa went down big time and scans improved after the 3rd treatment. My husband's PSA increased by smaller amounts at first - but then jumped 100 points. He was in the trial so was not paying out of pocket for the infusion. It is so hard to know what to do....
Ellyras,
Sorry to hear about the LU177 failure, I know a number of patients had limited or no response unfortunately. I would look at other trials that are out as they give you positive results.
This is terrible disease that seems to mutate around treatments I believe in continuing to hit it hard and often to see if we can knock it back.
I've had nearly all the SOC, including RP, salvage radiation, casodex, zytiga, xtandi, docetaxel, keytruda, provenge and surgery to remove 110 lymph nodes that were detected using the C-11 Acetate scan two years ago. I had my first Lu-177 treatment at Honor Health in Scottsdale, AZ on 3-7-19. My PSA prior to the infusion was 68.5. Prior to the second infusion 6 weeks later the PSA was 21 and prior to the third on 5-31-19 PSA was 6.4. I've had one set of bone and ct scans since the first infusion and the disease progression was stable. My next scans are scheduled for Friday, June 28th. The staff at Honor Health are fantastic. I am fortunate that the majority of my cancer had the PSMA expression. For those who have tried practically everything else, the Vision Trial is one more opportunity to beat back the disease for a few months or maybe a couple of years. Unfortunately, only about 85% of men have the PSMA expression and then the trial randomizes only 2 of 3 to actually receive the treatment. In this particular trial that is a stupid requirement since this can't be done double blind since the treatment is radio active and the person administering it is required to measure the dose and therefore it could never be double blind. Also, according to my information and notes on this site, most of the men who are randomized to the SOC side of the trial just drop out and seek other options. Sad for them.
Good luck to all on whatever treatment you decide.
cwu1974
It can't be blinded, but it can be and is randomized. We all better hope they are able to get enough men randomized to SOC, otherwise the drug will not get approved.
I am strongly considering trying to enlist in the LU-177 vision trial. For those who are randomized into the SOC and there are few if any options left to stop the spread of the cancer, what do they do for "best standard treatment' in this trial?
It depends what's been tried and how well it worked in the past:"Best supportive/best standard of care will be determined by the treating physician/investigator but will exclude investigational agents, cytotoxic chemotherapy, other systemic radioisotopes, and hemi-body radiotherapy. Novel androgen axis drugs [NAADs] (such as abiraterone or enzalutamide) are allowed."
With those restrictions, SoC is pretty much just ADT, abiraterone, or enzalutamide.
I found out yesterday that I'm accepted into the Vision trial. I haven't been randomized yet. Get to sweat it out over the weekend.
My SoC treatment will be enzalutamide. As I have already progressed on Zytiga, I'm not expecting too much from it.
Thanks for the information. I've had most of the standard treatments now which have all failed. So it will be interesting what they come up with if I do the trial and get the standard treatment option.
If you have health insurance, you may be better off in the long run than Frank. He didn't have any. It's hard to believe such a talent lived life without a net. There's been no one like him. Thanks for name checking him today. He's an inspiration for a lot of us fans.
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