I received several private messages to see how I am faring after my first Lu 177 infusion so I thought I would update. It has been 8 days and to be honest I continue to decline. My mobility has been reduced to being able to limp between the bathroom and bed. My pain in still out of control but the fevers I was getting the week of the infusion have stopped. I do feel a noticeable difference in the size of the lymph nodes located on the left side of my neck but unfortunately this does not correlate to feeling better. The pelvis is now the area where the pain is constant and most severe with a throbbing character. I need pain medications 24/7 but I definitely need palliative care to step up and start making me more comfortable (this is my only goal now). Pain control is NOT Mayo Clinic’s strong suit.
To back up I felt nauseous and had vomiting on the second night after the Lu 177 with fatigue and lack of appetite which is improving. My physical appearance is changing to mirror my weight. I am definitely starting to look cachectic now. Today I weighed in at 137.5 lbs (normal for me is 150)
I’m not sure what my plan is going forward. I still stand by this therapy for those of you that can afford it but I don’t think I could make another transatlantic flight anytime soon. I also urge you to do it when you are well enough with not super high disease burdens. A PSA of 3000 and a PSMA PET CT like mine is likely too much for any real mortality or morbidity benefit but I will give it another couple of weeks. When I figure out how to copy the PSMA PET CT I had 3 days before my infusion I will show you what I mean.
So for now I just want to be more comfortable as I am not doing the greatest with this goal. My wife and I are having open conversations about when and if to start interviewing hospice companies. My greatest fear (is due to my age of 47) this suffering will last for a long time since I am otherwise “healthy”. I have a sort of secret envy for those guys that enter hospice and 1-3 weeks later they are gone. I doubt that will be me. Take care.
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Cleodman
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I've been looking for an update from you but not this one. I am so sorry you are having to go through this. I'm not a religious guy but I will be thinking of you every day and hoping you can pull through this nightmare.
Cheepers Dr. C, You completed round 1, let's keep your chin up and hope the effects of Lu-177 helps to improve your condition especially your pain. Thank you for updating us. Easy does it🙏
Hey Cleodman, I'm sorry to hear of your suffering and not sure how long since your initial diagnosis , details etc... I just wanted to say one year ago I was where you are ( minus the LU 177 infusion) with unbearable pain and rapid weight loss. / In July of 2019 I was diagnosed Stage IV with mets to the bones and lymph, my PSA was 2700+ "not curable". For the 1st six months my weight dropped from 182 to '128' and pain for the first 2-3 months was bone crushing. / I'm on Lupron- Xtandi Combo to slow the spread and now my weight is back up to 160.
-> My point was going to be that Until the docs got the "pain thing" under control I wasn't headed anywhere good, once they were able to make me comfortable my entire mindset changed. So I think you're correct to address the pain as a top priority.
I know the journey for each of us is different and pray that your doctors are able to get you comfortable so you are no longer suffering, and are able to refocus on the next step.
I feel strongly that I need to offer you calming and useful words. I’d rather give you a big hug.
You and your wife are exceptional people and you live with great courage. I don’t know I could have decided to make your recent trip. My age of 71 vs your young age does influence my statement.
I started having severe pain 5 1/2 years ago, which was 6 months before I was diagnosed as stage 4 metastatic prostate cancer. Pain has been a constant victor in this battle.
Like you I sometimes think my pain is cancer driven and at other times I’m convinced it is from the medicines. All I know is a level TEN pain in my thigh through my knee and into the shin is a mother... .
Not receiving consistent and believable reasons from oncologists and other doctors causes me anxiety and perhaps more pain.
I don’t expect these words to be of much help. I do, however, hope someone will make the effort to let me know he/she cares with their words and hugs as I continue along this journey to _____?. I was just trying to have something more to say.
If/when folks in the USA may decide to start a search for some Hospice care service, this tool from Medicare can generate a list of Hospice providers, by Zip Code. (Other tools can generate comparable lists, too, of course.)
Cleodman, thank you for sharing what you are going through, I'm sure just writing is difficult. .I've been following your story, as many others have been, and I think you are amazing and want to say thank you for taking the time to share here. So sorry to hear you are in pain, you should not be in pain and I hope this can be fixed ASAP.
Having Psa at 3,000 before beginning Lu177 treatment may mean that you have a difficult battle ahead. And when Lu177 does get to work to kill Pca cells it may cause increased trauma because some healthy tissues will be unavoidably affected, and your body tries to fight to heal much damaged tissue, so there is quite a war going on in your body, and you would need rest, and I suggest using a pee bottle to avoid getting out of bed at night. I began Lu177with Psa only 25, Nov 2018, and it took 2 doses to get Psa to begin to go lower, but because Psa was so low, I had no Pca symptoms.
Its over 2 years since I began Lu177, and major benefit of 6 doses was reduction of all mets in lymph nodes. But bone mets which had low PsMa expression began to be seen in scan, so it was pointless to continue with more Lu177 after 4 Nov 2020. But Psa is zooming up and is now about 60, and another PsMa scan showed only bone mets so docs want to give me Ra223, which should work OK because unlike so many other men with high Pca level and high Psa no mets in soft tissues can be seen. They might be there, but cannot be seen, but all I can do is get the treatment most likely to work on what can be seen in scans,
I still don't have any Pca symptoms and I am managing to cycle 200km a week. Last time Psa was highish for me was in 2018 after 5 chemo doses that seemed to do very little and Psa went to 50 max, and yet I was cycling 200km+ a week at good speed.
I suggest you persevere with Lu177, so long as the PsMa Ga68 scans show mets with high PsMa avidity. Lu177 takes time to work.
In Melbourne in 2016, Peter Mac hospital did a first Australian trial on Lu177 with 31 men at end stage Pca, all highly advanced Pca and months to live. You can Google the results of trial done by a Dr Hoffman which includes videos and some of those men are still alive. Some got little if any benefit, others got near remission and in most cases where a good result occurred, it took from 2 to 3 doses before Psa went down to low level.
Before getting Lu177, we expect a miracle, and when I saw Psa go from 25 to 0.32 at 12 months after first Lu177 dose, I suspected a miracle had occurred, but then the effects of Lu177 had ceased, and any Pca remaining alive grew up again. So I had 2 more Lu177 doses in 2020, Psa went from 0.32 to 30 then down to 7, but then it was thought more Lu177 would not work, so I was forced to quit Lu177 treatment after 6 doses.
But Psa has zoomed up to 60, and now I can have Ra223. It may be my last kind of treatment that is not considered to be palliative care. More chemo is possible, but unlikely to work.
At 73yo, I realize I have had a fairly good life. I repaired a bicycle last week because I know I have a few more km to ride.
Patrick. I suggest you talk to Noxopharm for compassionate access to their new late stage PCa drug called Veyonda. I arranged for it to be available to my late brother who died on the 22 January last year after his MO refused to allow him to have there then 8 day dosage as it was 'not approved' yet.Their DAART Ph 2 trial will start in OZ and overseas in coming months. Dr Graham Kelly is himself a Late Stage PCa survivor. Contact them at their Turramurra office in Sydney.
I discuss Veyonda in my book An ABC of Prostate Cancer Today - 3rd Edition available from Amazon. I am very confident of Veyonda becoming a critical mainstream anti-cancer drug by 2022.
Hi Alan,Plans for getting Ra223 from Canberra Imaging fell through when doctor there said they don't now have facility for calibrating something or other that I don't understand, so now am relying Theranostics Australia to give me Ra223. I should get a schedule of scans and times and places for treatments, maybe in Sydney, or Brisbane, depending on Covid 19 border controls. It does seem that because we are an island nation, we have done well to keep C19 deaths to < 1,000. And we have governments who listen to medical experts and not to economists who are only pro big business.
I had Veyonda for compassionate reasons sent to my pharmacy for pick up and for 2 days before, and 8 days after last year's July and October doses of Lu177. It made me feel "a bit off" and its prime purpose was to increase PsMa expression at bone tumors. I have been kept on Xtandi for same reason. I doubt these drugs had any effect at all. I had my 6th Lu177 in Oct 20, then had follow-up PsMa scan and I had new bone mets with very low SUV only 1.6, but also had some bone mets with SUV 10. Doc giving Lu177 would not give me more Lu177, without saying why, and I suspect it is because more Lu177is a risk to bone marrow and other things I don't know about, and his experience probably suggests that more Lu177 would not have zapped all remaining bone mets. So I was placed back into care of my local oncologist at Canberra Hospital. Meanwhile last year's Lu177 brought Psa down from 30 in July to 7 at November 2020, but since then its gone back up to 60. I have a lot of little new mets in bones, all making Psa. So since I don't have any soft tissue mets then Ra223 seems like good idea, and I asked for it. Onco phoned Theranostics Australia, and doc who treated me with Lu177 agreed Ra223 seems like a good idea now.
I may need as much Ra223 as anyone can have, and maybe there will still be live mets which may go on to kill me and I may end up back on chemo with Cabazataxel maybe with Carboplatin. These are both available at Canberra Hospital.
Ra223 works by replacing calcium at bone mets where calcium is coming and going from bones during the fight between the body and cancer.
There is no reliance on PsMa expression forRa223 to work.
So I doubt my doc at TA will arrange to have Veyonda given to me.
Can you summarize just how Veyonda might become a mainstream drug against Pca? Is it going to work like Cosadex, Xtandi, or Zytiga? These hormone manipulating drugs just don't work for very long. They sure have not for me, I got Psa reductions from these drugs while I saw in scans that met numbers increased as well as their size.
Dr Hoffman at Peter Mac once told me in an email that treatment for Pca is not about just getting Psa low, its about killing all Psa at PG, and killing the the mets regardless of their size.
As time goes on, met cells die and new met cells form, often with DNA that makes them resist any known treatments. It seems Lu177 is good for zapping big mets with high PsMa SUV, but it can't touch what may be thousands of little mets with low PsMa SUV. These are what kill a man. We can easily have say 20 bone mets appear in PsMa scans and think that's all we need to worry about, but there may be thousands of mets that PsMa scan cannot yet see because they don't attract much Ga68 to form an image, and they are very small.
From little things, big things grow!
What are your thoughts?
BTW, below, Danish-patient says he had 9 doses Lu177 over 5 years and before he got bone mets and he's doing OK. But my first two mets appeared in first PsMa Ga68 scan in 2016, and a year later, bone mets appeared, so probably these all came from original Pca tumor at PG before any treatment began in 2010, and ADT kept mets small, out of sight, out of mind, until 2016 when plain old ADT failed. ADT does not seem to kill mets. it slows their growth down, and while they sleep, they mutate to be able to grow fast because they can make their own Testosterone. I wanted Lu177 as soon as I could after hearing - seeing what Dr Hoffman was doing at Peter Mac. But I had to fail chemo to get unapproved Lu177 from TA. And so 18 months were lost, dithering around with Cosadex, salvation IMRT at Epworth, then Zytiga, then Docetaxel. But maybe tiny mets in bones before 2016 were all there, but not able to be zapped by Lu177, maybe because of size, and maybe because they didn't express PsMa. Dr Hoffman has some understanding now about how fickle PsMa expression can be; its there, or not there, depending on some variable conditions that are just not well understood.
I second what Patrick mentioned about Lu-177 taking time to show its effect. I spoke to a nuclear medicine doc about Lu-177 treatment for my Dad. The doc advised to go for at least 4 infusions before seeing any visible progress on the mets.
Thank you for taking the time to update us. As someone who lives relatively near Windsor, it was particularly interesting to read your story. This is a very cruel disease that hasn't been taken seriously by the medical profession and general public for far too long. I wish you all the best. We are all rooting for you. Tom
I just wanted to shed some more light on PSMA lutetium treatment, having received nine cycles of that treatment myself over a period of appr five years. I can recognize the nausea during the first and second day following infusion of the treatment. Medicine is available to remove that feeling, so its just like a mild flu. My saliva glands are somewhat dry for some months following the treatment. But apart from that: no side effects at all.My situation is much different than yours, having PSA levels below 3.0 down to unmeasurable.
So my point to those of you who consider PSMA lutetium treatment is: it will help you the most if you get it early, especially before having bone metastasis, and with very few side effects. Certainly a treatment that is tolerated much better than i.e. chemo.
I feel sad for your dire situation and wish you the very best. But I think it is important to add this other part of the picture for men who might be considering PSMA lutetium as a way to treat their PCa.
I thought I went to get Lu177 early enough, not realizing my Pca is now about 17 years old, and showing signs it is mutating to not all be treatable by Lu177. I began Lu177 with Psa 25, it went to 0.32 after 4 doses, while taking Xtandi, then Psa went to 30 in 7months, then I had 2 more doses, Psa went to 7, I suspect Xtandi does nothing now, and at 26 months after beginning Lu177, Psa is 60 and docs won't let me have more Lu177 because of mutant Pca. Now they plan Ra223, which works on calcium traffic, not dependent on PsMa expression.
This is the problem with Lu177; it depends on uncertain production of PsMa, and what is really wanted is for Lu177 and chemo and woteva else is used to be able to led to Pca mets with a ligand chemical that recognizes Pca in some other way. And we don't want Lu177 to gather in saliva glands.
Docs say I only have Pca in bones. Thus Ra223 might be good. Its worth a try for me.
You could be right, but during first 4 doses, some bone mets were completely zapped and later scans showed the lesions were healing up. Bones have slower blood supply, so I can see the Lu177 is harder to deliver. Patrick Turner.
I agree with you re the importance of using Lu177 early in the disease. Indeed I would recommnend its use early, following primary treatment (surgery or IMRT) t mop any remaining PET PSMA avid micrometastases. GenesisCare were aware of that fact in the 2017s.My best wishes to you Cleodman and thank you for your clear and succinct description.
Are any clinical trials looking at this? I've had RP, IMRT and now on 2yrs of ADT with zytiga. If and when I recur, I was thinking that my next treatment would be ADT and docetaxel but now I'm not so sure.
I like this site because of the varying opinions and experiences of men on different protocols.
I am lazy and not able to dig out German (Baum and others) and Australian (Michael Hofman) data. But there is so much more anecdotal data with over 1000 patients eg with genesiscare by last year. The issue is that they do not have large numbers of control patients (who wants to be the control?? wehn it seems to be useful). 6/7 of my soft tissue lesions dissappeared. No a cure, but maybe an extra year or two of life (which I am loving!). R
You are in the hearts of many people you have never met. You were so brave to make the trip and so kind to share your experience. It is appalling that they haven’t been able to control your pain.
My husband and I are praying that the treatment will start to give relief soon and make you feel more comfortable. Thank you for sharing your experience.
May your pain dissapate very soon. Hang in there Tiger we all are on your side. Thank you for bringing us up to date with your battle against this fucking disease. Give your wife hugs and kisses for just being your wife.....
I am so sorry, such a devastating situation to be in. Like others, I hope that the treatments become effective.
You say your greatest fear is a long suffering end, and I hear this fear loud and clear. My husband is a bit older than you, but also otherwise very "healthy" and failing treatment. We have discussed end of life options before, and we both understand that prolonging suffering is not what our life together is about.
A recent story, from a wife who helped her husband find a peaceful end through voluntarily stopping eating and drinking. It is an option that can end life rather rapidly, with minimal suffering. She also details how she managed his pain control and comfort.
If this is too difficult for you or your wife to read, perhaps a close friend or family member, or spiritual counselor can read it and help you both explore this option.
May you and your wife both find comfort and peace. 🙏
You're right about Palliative @ Mayo. Even with the Fentanyl, Dialautid, Gabapentin, pain has not been successfully managed. We have cut out the Dialautid and Gaba and cut Fentanyl back to 25 mg instead of 50. Actually feeling the same amount of pain, and hoping to receive palliative radiation treatments very soon. don't give up on yourself - we're all rooting for you!
Hoping you can get through this difficult time to see some benefit of your treatment. Please let us know - you have a brigade of warriors , here at Male Care, think about you.
Thanks for your report and goes without saying we here are hoping for a miracle for you. But it pisses me off that pain management is not what it should be. Also remember hospice is not giving up ,it is a method to get together with folks who understand pain and help you and the family through transitions.
Hoping and praying that Lu177 will help ease your pains soon. Fyi, before my husband’s first Lu177 infusion, he was having pains urinating and walks with knees bent. After the 1st infusion, the pain in the groin area subsided and we were so happy that we were able to bike together. Although it didnt help with his bone mets after 3rd infusion, we’re still thankful that his pains subsided. So please hang in there and keep your head above water.
So sorry to hear about your pain , I can echo that pain control is not Mayo strong suit. You need palliative care, I just started 5 months ago and they have done wonders on my pain control.
I hope the LU177 gives you relief, I know it did wonders for me.
You are a fighter and we are all in your corner!!!
Thank you for sharing your story Cleodman, I felt I was reading my story in parts, you described it so well. I did Lu177 without success as well as the chemos, side effects from any treatment ive been on (and ive been on them all) were rough to say the least. I'm at the end of my tether. You aren't alone........that's how your post made me feel so I hope you also feel it.
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LU-177
One week & a day after first Lu-177 Injection. Life in the Prairie.
Lu-177 waiting for treatment...
Blood Test - 3 weeks after 3rd LU 177 infusion
Lu-177 Second time around
