Zytiga. After docetaxel and Jevtana failed mid cycle, MO decided to put hubby on Zytiga. He started with 1000mg per day. First PSA test showed Zytiga had dropped from 48 to 46. In the meantime, we managed to get hubby on a trial with Actinium 225. Had his first injection end January. We did second PSA test yesterday and PSA down to 38 and bloods fine. The Zytiga made him nauseous for the first few weeks. So far only side effects of ACT 225 has been VERY dry mouth as it affects the salivary glands. No saliva and no tears.. Also weightloss due to drinking alot of water. Next scan is 12 March to see what ACT is doing. The trial has had an 87 percent success rate with diminishing bone mets. I think he has been looking alot better and also not sleeping so much during the day. Still has dull pain in the back. The other patients doing ACT 225 have said their pain is almost gone after only 2 injections. ACT 225 is cheaper than LU-177. Trials in South Africa. Our MO was VERY surprised when we told him we got into the trial. All we did was send an email and were accepted immediately. We do believe God is on our side ! Will update as we go with ACT 225 !
Zytiga and Actinium 225: Zytiga. After... - Advanced Prostate...
Zytiga and Actinium 225
Thanks for posting---Glad to hear it...hope his PSA declines continue....good luck--encouraging news for others in a similar state...
So today we got results of bloods. PSA has declined from 38 to 9 ! Alkaline Phosphates also dropped. Tomorrow is a PET scan but so far this is the best news in a year !
Thanks for the post. ACT 225 is fairly new so I'm really interested to hear how things are going. You were saying it's cheaper than LU-177, I'm hoping that it will also prove to be more effective. It's an alpha emitter vs. LU-177 which is a beta emitter. Alphas are higher energy, shorter range particles which theoretically would cause more damage to the cancer and less damage to surrounding tissues vs. the longer range beta particles. Alpha particles also have a high likelyhood of producing double strand DNA breaks which spells death for the cancer. It's similar to Radium 223, only it goes to more places than just the bone.
Good luck and please keep us posted.
Gregg, you are correct. They also do the treatment in Germany.
radium 223 in trial published in lancet proved half the overall survival time of lu-177?, cant recall subgroup it was administered to.
Can you point me to where you found that?
Currently on Radium 223-Xofigo
The only caviot is that the blood levels have to be at a certain level to receive the once a month injection.
That has been a problem here.
Stay healthy with iron rich foods and build up to a level that will accept 6 treatments of this drug-
MO’s do not suggest that most of the time.
bnl.gov/newsroom/news.php?a...
looks promising.. wonder how long until private availability in Europe. Lu -177 has been available a while and is still being extensively trialed.
Germany is your best bet in Europe. University of Heidleberg do both treatments. There is also a company who arrange your hotel and transport. If you google you will find alot of information on it.
I also am considering University of Heildelberg for LU-177or 225.
I am in a trial since Xtandi failed. New drug is work similar to xtandi with different pathways.
Thereare trials here and if I cant get on one I will havwe to go to Germay.
Please send info for who to contact at Heilberg.
My psa is 325 , no bone mets and desease in the abdomen lymph nodes.
The trial is with Carmanus along with Wayne University ( Detroit ).
Thanks
Thank you, we will definitely do so.
Where is the ACT 225 trial being conducted?
At University of Pretoria with Professor Mike Sathegke. Where are you situated ? I know they have patients from China, Australia, Zimbabwe and Kenya.
Great news so far! I'm surprised that Ac-225-PSMA-617 is cheaper than Lu-177-PSMA-617. How much are they charging in South Africa for each injection?
Tall-Allen they quoted R 5000 per injection plus R 1500 per scan. The Lu-177 is about R 75000 per injection.
Tall_Allen, Can a patient commence lu-177 along with Xtandi if they have been taking Xtandi for a month and are continuing it or do they have to stop the latter if beginning lu-177?
Why would a patient stop Xtandi?
No overlapping toxicities I mean?
You have to ask the treating physician. I've never heard of stopping Xtandi or Zytiga while using it.
My husband had started zytiga two weeks before starting Actinium 225. Professor and Oncologist said there was no harm in taking both. For the first two weeks he experienced nausea when taking the Zytiga but he is fine now. Actually ALOT better than oon chemo. He has more energy
R 5,000 is only about $350 US! Do you know if they accept non-S.African citizens? It's worth the airfare and hotel for medical tourists. Plus, it's one of the most beautiful places in the world, especially this time of year.
Yes SA is great in Feb. i am sure they will consider international patients. Treatment is every 8 weeks. One just has to email their reports to them and request an appointment. They told us immediately via email that ACT 225 would be the correct treatment. The hospital is called Steve Biko Academic Hospital, Nuclear Medicine department. Because it is a University town and our capital city, there is plent of acccommodation.
Who did you contact initially?
We live in the US. From my research, I could not located any trials in the U.S. at this time.
1. "So far only side effects of ACT 225 has been VERY dry mouth as it affects the salivary glands"
What are they doing do ameliorate this effect?
2. Any reason to believe that PMSA LU-177 is less effective than PMSA Actinium 225?
To my knowledge Lu works if you soft tissue that is affected by cancer. My husband has bone mets.
Lu-177 goes to cells that express PSMA, those include a large number of prostate cancer cells including bone, but also some others such as salivary glands. Xofigo is a silmilar radioisotope, but only goes to the bone.
That's such good news. How did you get in the trial? Do you contact information?
The email address is sbahtherapy@gmail.com
I believe the salivary issue has been addressed in other trials of this theranostic with application of chill packs on neck/lower jaw. Similar to treatment with chill packs on hands and feet during chemo to reduce neuropathy.
It is time to do your hair and nails! Hope you get fantastic results. Why can't U.S. get it together and do what other countries are doing? Thank you so much for the post. I know you have started a lot of people doing a lot of hard thinking.
Monte1111 I really really hope it works so that alot more people can benefit. I told one of the Professors at the University that we need to make more people aware of this treatment. I am not a doctor but these people are so positive about the treatment. We were a bit nervous going to a government hospital at first but we were treated so well by this team. The positive attitude amongst the patients was quite something to see, especially compared to the chemo rooms.
Your post is (drum rollllllllllllllllll) *****POST OF THE MONTH!!!!***** (hail to the chief playing in the background). A reward is on it's way. A year's supply of personalized paper cups, all you have to do is change your name to "DIXIE".
Good Luck, Good Health and Good Humor.
j-o-h-n Sunday 02/17/2019 7:24 PM EST
Thanks for the info. I've been looking at Lu177 and my specialist is already hinting that Actinium may be a better option. The destruction of salivary and tear ducts is a worry. I wonder if anything could be done to reduce the damage and whether it gets better over time?
Researchers in Vancouver are considering testing of MSG (yes the food additive) to reduce the effect of radio pharmaceuticals on salivary glands. Have not started using MSG in clinical trials yet. They are discussing this with researchers in Australia. Please don’t experiment with MSG without discussing with your doctors. There are food safe limits for MSG.
LDB,
Praying for a positive outcome for you with this trial.
Keep us posted.
BOOGEE
I'm 3-4 weeks into first treatment of Lu177-617.. flew to Heidelberg from the UK. I'm not sure about the Actinium..I thought that was included too. They injected two things into me that day. Felt fine for first few days then really had a rough time with nausea and fatigue and generally feeling unwell. Better now but haven't noticed any clinical improvement yet. Do have dry mouth... Only notice upon waking. Might consider cold packs next time to minimise extra damage.
Had a blood test last week and Alkaline Phosphatase was spiked to 3100 which was scary.. up by 1000. PSA not sure but they said it can be spiked within 3 weeks and then settles down usually if a patients responds... pSA bloodest at 6 weeks determine if therapy is working and a second and third session is worth doing. Expensive.. something like £9000 each time.
I'm 51 and suffering with dense widespread skeleton Mets..spine hips and pelvis and shoulders. Xandi didn't work (hates that drug anyway) and so perhaps no treatment options other than maybe Zytiga if the Lu doesn't work.
why Was zytiga not exhausted first and if your mets are predominantly bone why did you not go for radium 223 over lu-177
congrats on trial can you participate in a trial if you live in different country? via proxy?
Hi There, my Dad is starting Actinium 225 within the next few weeks, and I just wanted to reach out to you for some advice. Can you please let me know if you would be open to this?
Hi there, yes I can share our experience with you. I am however not a medical professional, just a supportive wife.
Hi There, my apologies for only responding now...Hope all is well. My Dad went for the first round of Actinium 225 in September and is due for another round now. We just received results of his new PET/ CT Scan, and it does not look as though there has been much of a change as yet, in fact possibly a bit more disease progression based on the scan results. Can I ask how long it took your husband to see improvement in his condition from the Actinium treatment? Also, is there any possible preventative measures we can take for the dry-mouth side-effects?
Hi there NLA0, well the my husband had excellent results after the second injection. We were able to go on holiday and his psadropped to 2. Bear in mind he had also started Zytiga at the same time. Two months later the psa rose to 14. Oncologist stopped Zytiga. He was off it for two months but continued the ACT 225. Scan 4 was terrible, the disease had progressed so much that even the Professor was shocked. In discussion with the Professor and Oncologist, they agreed that putting hubby back on Zytiga was better which they did. The very next PSA test was better, dropped from 48 to 35. Disease progression had improved. He just had injection no. 6 yesterday and most mets have again improved except for one in his back. It is not the response we were hoping for. On 1 November, Oncologist gave hubby zoledronic acid which strengthens the bones. A week later we travelled to USA to do a cruise. My husband became completely immobile and was extremely sick the whole trip. We are very very confused.
The professor explained to us that the treatment works differently on everybody so try not to lose hope. Definitely recommend the treatment along with hormone inhibuitors like Zytiga. Also discuss any use of Zoledronate or Zoledronic acid ivs while on ACT 225. We feel that this combination ruined our vacation as we discovered last night that my husband has had some of the more serious side effects of Zoledronic acid which will be discussed with Oncologist on Thursday.
With regards to the dry mouth, we found a product while in USA called XYLIMELTS. They are a tablet that sticks between the gum and the inside of the cheek. One tablet lasts 4 hours. Hubby was able to have a conversation without reaching for his water bottle !!! I highly recommend these and am sorry I did not buy earlier. You can buy them on Amazon.com if you do not live in America. They also have Biotene mouth spray which works better than any other product we bought here in South Africa.
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