Hello there! My husband’s PSA is now on the rise and latest 18F-PSMA-1007 Pet/CT shows disease progression 😔 In summary it says that there’s an increase in tracer avidity, number and size for all FPSMA-avid lymphadenopathies and osseous metastases.
From the start of stage 4 diagnosis in 2018, husband did Zytiga, Docetaxel and then back to Zytiga along with Xgeva and Eligard. PSA went down to as much as 0.34 in Oct 2019 after 6 cycles of Docetaxel which he tolerated fairly well. But January 2020 to present time his PSA continues to rise which means Zytiga isnt working anymore. It is now at 1.9 ng/ml. His PSA may not be that high but his pet scan showed a lot of block spots (PSMA-avid) and he has been having urinary/rectal pains for many months now but colonoscopy didnt show anything unusual.
And, our onco recommended 3 options: Xtandi, Cabazitaxel or Lu-177 (Btw, husband doesnt have any genetic mutations like BRCA1/2 based on germline test done in Singapore last yr. But we havent done any test for somatic mutations)
Since, Zytiga and Xtandi have a similar mechanism, Im not sure if this one will work.
As for Cabazitaxel, just found out that the price here is $34,000 for the 6 cycles and thats just about 4.5 months! I almost fell off my chair!
And lastly for Lu-177, this is fairly new here and only one hospital can offer it here in the Philippines. We had a very long conversation yesterday with the doctor who trained in Germany and she discussed with us that Dondee is a very good candidate for it. However, the price for the minimum 4 treatments is about $36,000 (ouch!). But thats for the whole 8months with treatment every 2months/8weeks.
I am seeking for your expert opinion as to what is the next best possible course of action for us in terms of success rate, side effects, etc.
I dont know how we are going to get the money but we will have to find a way, we have to, because we cannot give up yet! We have to keep fighting just like the rest of the strong warriors here!
TIA.
Vikkie
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Because he already had a Docetaxel treatment I would go for the Lu177 treatment now and maybe take Cabazitaxel at some point after that.
However, I would get two cycles and then do another PSMA PET/CT to see how the Lu177 worked. If your husband does not respond you can save yourself the two additional cycles. My personal opinion is to take longer breaks between the Lu177 cycles. So I would make a break of up to one year before getting the third and fourth cycle. It may well be that Eligard will work again for some time after the second cycle and allow for such a break.
There is a another pet scan scheduled right before start of 2nd cycle of Lu177 as per our doctor who will be conducting the treatments. Although Ive read mostly in this forum that the pet scan normally happens after the 2nd cycle. Ive told the doctor about that but she insists on the pet scan right before 2nd session to see if its working or not i guess? But isnt it too soon to check?
It would be nice to have a break right before 3rd and 4th cycle. So we’ll see what happens after 2nd and hopefully response is good.
It depends how expensive the PSMA PET/CT is, it does make sense to get it. In my case the second cycle could be cancelled because all the mets were gone. But I just had a few very small lymph nodes, this will not happen with your husband.
You have to ask for the break after the second cycle. The doctor makes a living from treating patients. My doctor is rather disappointed because I need no further cycles now.
Wow thats good to hear! I hope my husband will have the same positive response like you did! So, once your mets cleared, did you take any maintenance meds after like Zytiga or Xtandi? How about Xgeva and Eligard/Lupron? Or did you have a full holiday break?
Your husband has osseous metastases which I did not have. So your husband will not have the same response as I did.
In case of osseous metastases I would recommend an Ac225/Lu177 mix because Lu177 has limited effect on osseous metastases. See the post from Rexwaterbury who reports of a Lu177 treatment with osseous metastases present:
I mean, if you invest in this treatment, I would try to get it right from the beginning and not get Lu177 cycles with limited effect. Your doctor will be able to get the Ac225/Lu177 mix for the treatment also.
Ohmy! Good thing you told me about this! I didnt get to read this when i searched for Lutetium in this forum. I will have to discuss with our doctor about mixing Ac225 but im fearing there will be some added cost due to additional med. But yes you are right this is a huge investment on our part so we want to get it right as much as possible.
Ive just spoken with our doctor on the phone and she said that unfortunately Act225 is not yet available here. Heidelberg is a bit advanced in that they access to both Lu177 and Act225. It will take about a year before it can be offered here 😢
The clinic in Germany that I corresponded with wants all patients to be on Xtandi (enzalutamide) prior to starting Lutetium 177. They believe Xtandi in conjunction with Lutetium increases the effectiveness of the Lutetium treatments. My advice is to try Xtandi. It does have a different mechanism of action than Zytiga. If Xtandi doesn’t work, then add Lutetium but don’t stop taking Xtandi. I am assuming you are still on Lupron. Hope that helps.
So the finding is that Xtandi will increase the PSMA expression and thus improve the effectiveness of the Lu177 therapy even if the cancer is resistant against Xtandi.
Thanks Ryderlake2/GP24 for the advise! But I wonder if its ok to continue with Zytiga instead of Xtandi because we still have some left. As for Xtandi, we wont be able to afford it along with Lu177. But yes, our doctor said that taking Xtandi makes Lu177 more effective but will be very costly!
Btw, should Xgeva and Lupron/Eligard continue during the entire Lu177 treatment?
The way it was explained to me was that once you have boarded the Lupron/Eligard train you stay on that train. Other treatments may be added or subtracted from your train but you don't get off the train. Remember prostate cancer cells are heterogenous not homogenous. The Eligard is still having an effect on some of your cancer cells. You abandon that and you are right back to square one. Hope that helps!
Also stay on Xgeva/Prolia. A maintenance dose of that drug is building bone strength and preventing a Skeletal Related Event (SRE). I wouldn't give it up. Hope that helps.
Thank you Ryderlake2 for the advise. Our onco said the same thing just now when i texted him. We would have to stay on Xgeva/Eligard while on any treatment protocol.
The small study which is available now has tested Xtandi only. Nobody tested with humans if the same result will be there using Zytiga.
You only need to take Xtandi for about two weeks before and two weeks after the Lu177 injection from what I can say. If the health insurance pays for it you will take it longer.
I took Bicalutamide which works similar to Xtandi but is much cheaper. No study is available for that in combination with Lu177 too. I just gave it a try.
The two replies you have received are good ones.. I did 6 cycles of Lu-177 as part of the "Vision" trial (now closed) and it was the first two treatments that produced the biggest improvement .. The treatments came 6 weeks apart. 8 weeks should work just as well.. Lu-177 is not without it's side-effects... The actual PSA number is not as important as its doubling time..If the LU-177 does not work out, then R-223 might work for you..
Unfortunately, as the disease progresses, so do the costs of treatments. Another option is to do another set of Taxotere infusions. He responded well to them the first time, so he may still respond to it.
It is also a good idea to have an FDG PET/CT - if he is FDG-avid as well as PSMA-avid, it may be a waste of time and money to have PSMA-targeted therapy.
His progression with low PSA may indicate that there is some type of resistant prostate cancer emerging. If possible, consider a biopsy of one or more metastases. The pathologist should look at it under a microscope (histology) and stain it for various proteins (IHC analysis). This may be more informative than a genomic analysis, which is very expensive.
As for Taxotere infusions, i would really prefer that because its more cost-friendly. However, husband is a bit hesitant because the last few cycles he said were a bit rough on him compared to the first few ones. And he just had it 3rd Qtr of 2019, is it ok to do it again?
I have mentioned to the doctor what you wrote about comparing FDG PET and PSMA PET scans before Lu177 treatment and explained about repopulation but she said that in Germany they dont normally compare scans anymore. But I will discuss with her again and talk to her if she can still compare both scans, just to be sure.
Is it ok to do the IHC analysis on existing tissue sample from the first biopsy upon diagnosis or should we get new sample?
Our MO said it may be a bit hard to do biopsy now due to the location of the bone mets and the lymph nodes.
It is common for Taxotere treatments to get progressively harder. But if it worked without any signs of failure, why not try it again? It's less expensive than Jevtana.
She probably doesn't understand the effect. In Germany, they never did compare FDG and PSMA. This is new info coming out of Australia. Send her the link from Michael Hofman.
You have to get a new biopsy for histology and IHC (and genomics) because some effects are treatment-emergent. If lesions are not accessible,it can wait.
The only issue i have with docetaxel is that it decreased some of the lymph nodes but not all and it didnt have any effect at all on the bone mets. Now both lymph nodes and bone mets all increase in size and number. Which one to address first? One option is we do docetaxel again and then xofigo but i havent checked yet if xofigo is even available here or how much. So many things to consider. My mind is already spinning! 😔
The cancer does become docetaxel-resistant. That's what Jevtana is for. But if you can't afford Jevtana, you have to use a therapy that is available and that you can afford.
The FDG PET will help you decide between Xofigo and Lu-177-PSMA, If his cancer is highly heterogeneous, PSMA-based therapy may decrease rather than increase survival. Unfortunately, Xofigo does nothing for the lymph nodes, but it will attack most bone metastases, whether or not they express PSMA.
I just found out that we dont have Xofigo here 😢 and yes we are looking for FDG pet here and if in case we proceed with PSMA based therapy and it doesnt work, we have no other choice but do cabazitaxel next, which is also equally expensive *sigh* to the nth power...
Dr kratochwil at Heidelberg told me that they do not believe that xtandi increases the effectiveness of lu177, and do not prescribe or recommend it. They do recommend that you continue if you are already on it.
Hi Rex, Ive read all your experience with Lu177 after GP24 sent me a link to your previous post and they are very informative esp that we are considering Lu177 treatment for my husband. Btw, my husband has a lot of bone mets too apart from lymph nodes involvement and there are some constant pains in the chest and back area but still tolerable.
May I know what was the dosage of both Lu177 and Ac225 when you mentioned the doctor increased the Ac225 and lowered the Lu177 in your 3rd session. I saw you started off with 7.4/2.0 Mbq in your very first treatment. I know dosages is diff for all but just wanted to have an idea. Btw, i remember our doctor mentioning 7-7.5Gbq for my husband and not Mbq, ohmy i will have to doublecheck!
I would recommend Lu177 treatment just on the basis of your PSMA avidity with PET PSMA, and past treatment classes. Yes FDG PET will give you more info for those lesions that are not Lu177 responsive but it given that your man has had a blast of chemo already I probably wouldn't bother and save a few thousand $. Speaking of which, your Lu177 treatment (4) is cheap by global standards!!
Prior enzalutamide probably of little value if your PSMA avidity is high and I would keep it in store for one of your later treatments, as I will.
All the best, I am going for my own 5th Lu177 Wednesday; I finished my docetaxel (7 cycles) 2 months ago. Rob.
Actually, the $9k for the first session includes the Lu177 med, 2night hospital stay, premeds, doctor’s fee, post therapy scan but it doesnt include yet the 18F-PSMA-1007 Pet/CT which we already have and thats roughly about $1,600 so total of about $10,600 or $11k. Succeeding sessions will be about $9k.
Wow! I would love to hear more of your Lu177 experience in terms of side effects, effectivity, etc, Do you have lymph and bone mets too? Whats the effect so far? How many weeks interval per session? And 2months only after docetaxel? Anyway, I hope you are tolerating and responding to it very well.
Your price is still good by international standards. Look up my profile on this site for my history of previous Lu177, treatments in 2017 etc. To your Qs: no real side effects of Lu177 over 4 cycles (approx 7 Gigabecquerels per shot), but some asymptomatic liver damage (AST ALT enzymes increased to 3-7x upper normal range), no dry mouth that I remember. Efficacy - treatment probably delayed PC progression 1-2y but that's a guess. Treatment had an interval of 2mo - don't think that is critical. I do have bone mets now 4 years later, not then.
Thanks immunity1 for some useful info. Yes looks like its a bit cheaper here but i think its cheapest in India. Its nice if it was helpful for u 1-2yrs. We have limited options here unlike in the US, Europe or Australia so we have to be careful with our decisions. All the best on your 5th Lu177!
Actually to be fair you probably have the same usual SOC stuff where you are. But expense differs among country. The recent findings such as Lu are still being proven if not experimental. The best sequence of treatments is almost anybody's guess and for those of us who have been at it for a few years we are probably going about it arse about face, as it were!
My PSA was 2400 when I had my first Lu-177 infusion in Oct 2019. Six weeks later, just before my 2ed infusion it was 700.. Six more weeks, down to 350.. Then 200, then 135.. And that was as low as it went.Now, in May 2020, it's 600.. Side effects have been major dry-mouth. Loss of sense of taste and smell.."Chemo-Brain", heavy fatigue, a feeling of general malaise, loss of appetite...I have no pain and never have..
During my 12 year journey, I've done surgery, salvage radiation, ADT including Zytiga and Xtandi. Chemo including Dose and Caba..Then last September started the "Vision" (Lu-177) trial...I'm 79 years old...So at the moment it's impossible to say why I don't feel like I did when I was 20.... But I'm still here, can still drive a car and ride a bike...
Thank you for sharing your experience! You have gone thru a lot but still here you are, still strong and wow riding a bike. My husband miss that so much! He cant ride anymore due to the pains when walking or sitting for long. Hopefully his nxt treatment will help ease those pains. 🙏
Hi There, I had two treatments of LU-177 & it worked really well. PSA was 18 down to 11 then 1 & that was two years ago. Now it is rising again, so i can say it gave me two years of life but if i dont keep going with it now the future is unknown. The oncologist wants me to start ADT Firmagon, but i can not tollerate the side effects.
Price here in Australia is $10,000 each time but what price life?
I will add the side effects for me were none the first treatment then coughing blood from an old ulcer the day after & pains in the knees on the second treatment.
Thank you Aries29 for the info. My husband will start with his Lu-177 treatment tomorrow July 2. Praying for tolerable side effects and that he will respond well to it. 🙏🙏🙏
All the best on the treatment which probably has already happened given your side of the world! I thought I would be the poster child and have two treatments and be done for a year, but instead we hammered away at it and my PSA is undetectable after treatment #5. So I'd say that your choice of number of treatments should be based on the data for your case, not an automatic year off. @GP24, I wish that I had your fast response!
I have mostly LN disease, and my side effects are mild nausea and fatigue that lasts around a week, and it's hard to tease out what is from the treatment and what is the jet lag from hopping the Atlantic to Germany and back in less than a week. After my first treatment it was a week before I got back on skis (winter), and after the last couple of treatments I've been back on my bike as soon as I get home. The dry mouth was minor after each treatment and improved before the next one, however after #4 it's been worse and more persistent. Hopefully that will heal before I have to go at it again.
All in all, I think these are really minor impairments and I've been able to really live my life fully going down the 177Lu road.
Thank you TeleGuy for sharing your experience on Lu177. I hope my husband will also have the same positive result just like you did. May I ask if you have continued other medications such as Zytiga/Xtandi while you are having Lu177? How long did it work for you before it comes to a point where it no longer works? TIA.
I was asked to stop abiraterone (Zytiga) during the treatment time due to a small study that showed something adverse-- I haven't seen the study but that's what my docs in Munich preferred. I'm continuing with ADT.
I'm just at the point where I can coast on what the treatment has given me, so I don't know yet how long it will work! My understanding is that when it comes back after my current break it will likely respond to a rechallenge.
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