Update on LU 177 and Journey - Advanced Prostate...

Advanced Prostate Cancer

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Update on LU 177 and Journey

topofthemountain profile image

I had a prostatectomy in January 2017 at age 66 when my PSA was 9.3 but in January 2018 the PSA rose to 18. I commenced eligard and my psa reduced to 1.3 in July 2019 before my PSA increased to 18. I commenced Xandi and my PSA at first reduced to 7.7 before rising to 40. I had a gallium 68 PSMA pet/ct scan that showed intense psma uptake.

I had my first Lu-177 infusion in Febuary 2021 after Enzalutamide (Xtandi) stopped working and PSA increased to 50. My first infusion reduced my PSA to 3.1. My second infusion on 8 April 2021 reduced my PSA to .65. Over the past six months we continued to monitor my PSA which rose to 1 in the first 4 months and to 5.2 after 8 months.

I have agreed with my Oncologist to commence Zytiga now and to monitor on a monthly basis to see if we can buy time. If PSA continues it upward projection than I will probably commence the fourth and fifth infusions of LU 177.

Knowing there is no cure I focus on buying time while living life to the fullest. In the last 12 months I have travelled to Norfolk Island off Austraia twice, driven from Brisbane Australia to Longreach Queensland Australia some 2350 kilometers and driven from Brisbane to Cooktown Queensland Australia some 4100 kilometers. I have attached a photo of a unit at Airlie Beach on the great Barrier Reef that we stayed at on our trip to Cooktown

43 Replies
Grumpyswife profile image
Grumpyswife

Wow that's a gorgeous view.

You are making me jealous. Lately I have been depressed seeing my husband physically failing and knowing that our traveling days may be ending. Great that you are enjoying it while you can.

topofthemountain profile image
topofthemountain in reply to Grumpyswife

Thank you.

Jbooml profile image
Jbooml

We love visiting Oz despite the torrid heat, stingers and other pests, we've immensely enjoyed our camping trips around Queensland. We spent a week in the WhitSundays just as covid was breaking out in 2019 unbeknownst. We deeply miss our biannual visit this year.

Tall Allan mentioned zytiga combination with other heavy hitting Tblockers (perhaps darolutamid) as a potent next gen answer to creeping METs. Just an idea as we’re all so uniquely besieged by our PC.

Enjoy the wonders of your mysterious island continent…I very much enjoyed our mucking about in the Daintree if you’re coming back that way…talk about tropical.

topofthemountain profile image
topofthemountain in reply to Jbooml

I will talk to my Oncologist about adding darolutamid at my next meeting. Thank you.

bellyhappy profile image
bellyhappy

My very best to your next treatment option. With the attitude that you have, I am sure you will overcome whatever is coming your way. Loved the view that you have shared. We must live our life to the fullest. God bless

topofthemountain profile image
topofthemountain in reply to bellyhappy

Thank you.

Cynthgob profile image
Cynthgob

My husband is in a clinical trial in Chicago and the trial is for six treatment of the isotope.

shipoo profile image
shipoo in reply to Cynthgob

What trial are you referring to? Could you tell me where it is being conducted, what it is called, and what is the isotope you are referring to. Most important, how is your husband doing?Shipoo

topofthemountain profile image
topofthemountain in reply to shipoo

I was not on a trial. The isotope is Lu-177 which emits β-rays that have a short range in soft tissue (average 0.23 mm, max. 1.7 mm) and γ-rays. The Lu177 had no side effects for me but it is not a cure but does kill cancer exhibiting PSMA. I had two infusions 8 weeks apart and my PSA reduced from 50 to .56. It had since risen to 5 and my oncologist is trying Zytiga. If it does not hold the PSA down I will have another 2 infusions of LU 177.

TeleGuy profile image
TeleGuy

It sounds like you had a great first response to the Lu-177 but then you stopped the series for some reason. The VISION trial in the US used six treatments, and I did five in Germany until my PSA became undetectable so there wasn't much point in doing more. I wonder if you should get another PSMA scan and see if your cancer is still PSMA avid and whether more of the same treatments would help?

andrew61 profile image
andrew61 in reply to TeleGuy

How long have you remained undetectable?

TeleGuy profile image
TeleGuy in reply to andrew61

My streak ran from June 2020 (time of last treatment) to October 2021. My PSA just became detectable again at 0.03.

andrew61 profile image
andrew61 in reply to TeleGuy

I got almost 2 years from my first 4 x Lu177’s at UCLA. Now I’m doing it again in Munich. 2 down and probably 2 to go.Hopefully FDA approves Lu177 soon.

TeleGuy profile image
TeleGuy in reply to andrew61

Are you visiting TUM in Munich? That's where I got treatment. Counting from the beginning of treatment, I'm almost at two years.

andrew61 profile image
andrew61 in reply to TeleGuy

Yes. TUM.

topofthemountain profile image
topofthemountain in reply to TeleGuy

I had my first two infusion at Brisbane Australia. I commenced in 2021 after Xandi failed.

topofthemountain profile image
topofthemountain in reply to andrew61

Lu-177 is really a good drug to fight the cancer. So far it is the only drug that has made a big difference to my PSA level. I intend to try some other drugs and move back to LU-177 when they fail.

Kodamolagai profile image
Kodamolagai in reply to topofthemountain

Any side effects of Lu 177My oncologist said he will recommend Lu 177 after seeing my response to chemo

topofthemountain profile image
topofthemountain in reply to Kodamolagai

I had no side effects. The infusion took all day and I could not leave the hospital until my Lu-177 reading reached a safe level. I was then required to keep away from children and pregnant women for 5 days.

Kodamolagai profile image
Kodamolagai in reply to topofthemountain

Thanks .that was helpful

Ramp7 profile image
Ramp7 in reply to topofthemountain

I have just had my first infusion Jan. 13. At Dana Farber with the trial study. The infusion for me took 30 minutes. I was all set to leave an hour latter. It's only been ten days but no ill effects. They shall take a blood draw each week. The results have not been posted for me. Time shall tell. A total of 6 infusions are planned, 6 weeks apart.

cancervictim profile image
cancervictim in reply to andrew61

wow! That's amazing! I'm wondering if Gleason score is a predictor of efficacy of Lu-177.

topofthemountain profile image
topofthemountain in reply to cancervictim

My Gleason was 9 but I have never heard anyone say that it is a predictor of efficacy of LU-177.

topofthemountain profile image
topofthemountain in reply to TeleGuy

I have attached a copy of PSA chart. I only got short reprieve with Xandi and Lu-177 works the best. But I don't want to use all my Lu - 177 option until I try some other drugs. Also seeing if I can buy time using different drugs.

topofthemountain profile image
topofthemountain in reply to andrew61

I have not being undetectable since late 2017 after my prostatectomy.

topofthemountain profile image
topofthemountain in reply to TeleGuy

As you would be aware LU-177 only kills the cancer exhibiting PSMA so it will never kill all cancers as many of the small cancer will not exhibit PSMA. After two infusions my PSA was .65 and has only risen to 5 after six months. My thought is to try other drugs such as Zytiga to see if I can reduce the PSA or keep the PSA low. I can understand multiple treatments if the PSA remains high but I don't understand the rationale for multiple treatments if the PSA has a significant reduction. There is not a lot of research on how many infusions the body can tolerate. My strategy is to hold back on LU-177 until other drugs fail then try anther 2 infusions.

TeleGuy profile image
TeleGuy in reply to topofthemountain

My feeling is that the reduction to 0.65 proved that it was working, but there was still work to be done. My MO's approach is to stick with a therapy that is working until it ceases to work, and then move on when there is a combination of changes in PSA/scans/symptoms.

andrew61 profile image
andrew61 in reply to topofthemountain

Lu177 kills cells within a couple of mm - so close by non PSMA cancer cells also.

I’m having Lu177 in Munich. They started out thinking 4 treatments max. That’s been increased overtime and now they tell me I can have it as long as there is PSMA cancer and I get good uptake on their scan.

topofthemountain profile image
topofthemountain in reply to andrew61

My oncologist has a research background and is advising me caution because of the lack of research on Lu-177. But I am interested in getting the maximum outcome from the Lu-177 treatment over time while seeing how other drugs can help.

andrew61 profile image
andrew61 in reply to topofthemountain

I agree that the lack of long term data is a major concern. However, in my case, I’m not sure that I have a long term future without it!

topofthemountain profile image
topofthemountain in reply to andrew61

I am hoping that something new comes along that is as good as LU-177 but a more permanent outcome. At this stage I am trying to buy time using both Lu-177 and other drugs. Only time will tell me if this is a good approach.

NWLiving profile image
NWLiving in reply to topofthemountain

Buying time is what we have…

larry_dammit profile image
larry_dammit

Hang in there warrior, things do change over time. But use your time wisely 🙏🙏🙏🙏

topofthemountain profile image
topofthemountain in reply to larry_dammit

Thank you.

dadzone43 profile image
dadzone43

You are fortunate to having your view--and your view of expectations. Also fortunate to have access to advanced therapies like lutetium. We are not yet so blessed here in the USA. Happy trails.

Thank you.

Ausi profile image
Ausi

Where in Brissie are you getting your Lut, Wesley?Genesis?Obviously your Onc thinks Zytiga is worth a go even after Xtandi.

Good luck mate

topofthemountain profile image
topofthemountain in reply to Ausi

I go to the Wesley icon centre. We are going to monitor Zytiga for the next three months and see were it takes me.

j-o-h-n profile image
j-o-h-n

Have fun....... leave the wife home.....

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 10/25/2021 11:33 PM DST

Boywonder56 profile image
Boywonder56

Hope your driving a car you always wanted.....

Ausi profile image
Ausi

Hi Tony,

Im curious to know how things are going, you haven’t posted since this. I’m in a similar situation regarding the previous treatments ie I’m on Zoladex ADT and failed Enzalutamide about 4 yrs ago and having been zapping my bone Mets since. My onc has now made an appointment for me to see Prof McFarlane Re Lu 177. I’m on the Gold Coast, he visits Genesis here.

How many infusions have you done now, how long apart, how did Zytiga go, did you do Daralutamide. PSA still dropping??

Hope everything’s going well for you

Thanks

Ian

topofthemountain profile image
topofthemountain in reply to Ausi

Hi AusiSorry for the delay in responding, it seems like I didn't repond through the wrong email. As previously mentioned I had two infusions of Lu-177 which was very successfully. My Oncologist is always looking for better treatments so we moved to Zytiga which was holding my PSA. We have been talking about a study of my genes to see if anything shows up. About 8 weeks ago i had radiation for 2 tumours on the spine. In the two weeks my PSA started to rise and we concluded that Zytiga had stopped working. At a meeting with my Oncologist, Radiation Oncologist and Nuclear Oncologist it was agreed that I should undertake another 2 infusions on LU-177as I have a lot of PSMA. I am currently arranging the infusions through i-Med at the Wesley.

Ausi profile image
Ausi in reply to topofthemountain

Thanks for your reply, good luck with 3 and 4 Luts. It’s a pity you didn’t get longer from Zytiga. I’ve started the process but am waiting which is very frustrating. Genesis have put me up for a trial, it’s a new version on Lutetium 177, it’s the ProstACT SELECT trial looking at the use of lutetium J591. It’s only 2 infusions 3 weeks apart, expected greater efficacy. Its being run out of the PA in Bris.

All the best

Ian

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