We are new to this group and joined because several folks have had Lu-177 therapy, something we are interested in -- though we are considering the Ac-225 version instead. My husband -- age 75, mCRPC, PSA 170 -- has exhausted all other options (except for chemo, which he does not want). His oncologist is supportive of his seeking this treatment.
We emailed Dr. Uwe Haberkron in Heidelberg (a week ago) but have not yet heard back. For those of you who have gotten treatment at Heidelberg, was a phone call a better approach?
We are, of course, also interested in any new reports of Ac-225 treatment, either at Heidelberg or other locations.
Thank you in advance.
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When I had the Lu 177 treatment in Munich, the doctors told me that the Ac 225 PSMA is frequently associated with problems in the salivary and lachrymal glands. These complications are less severe or negligible with Lu 177 particularly if one cools the glands with cold packs during and after the infusion of Lu 177 PSMA.
Yes! It's tough to weigh the trade-offs. On the one hand, the alpha particles are supposed to be better at penetrating and destroying the cell nucleus; and the shorter half-life means that there is less "collateral damage." On the other hand, as you point out, there are issues with the salivary and lachrymal glands, which are not inconsequential. The language in the article you reference above about this side effect, ("this finding indicates that further modifications of the treatment regimen with regard to side effects might be necessary to further enhance the therapeutic range") does give one pause.
I mis-spoke (mis-wrote). It's not that alpha particles have a shorter half-life, but rather have a shorter range, hence the lessened likelihood of damage to surrounding cells.
The rate at which a radioactive isotope decays is measured in half-life. The term half-life is defined as the time it takes for one-half of the atoms of a radioactive material to disintegrate
Hi. In my husband's case it did not. He had two cycles of Lu-177 and Ac-225. The first cycle (5 MBq Ac-225; 1.2 GBq Lu-177) had some impact on his salivary glands; the second cycle (4 MBq Ac-225; 4 GBq Lu-177) almost completely wiped them out. Dr. Kratochwil said that it might take upwards of a year to see if they would "come back."
That said, it's probably worth noting that he was not a good candidate for this therapy in the first place and the folks at Heidelberg offered it "reluctantly." His PSMA scan showed that other than the parts of the body that express PSMA normally (such as salivary and lacrymal glands, the small intestine, etc.) the only other places he was expressing PSMA were his thoracic spine and two spots on his ribs. We speculate that because there was not that avid expression of PSMA from prostate cancer that more of the radiation went to his other organs.
In reading articles about successful Lu-177 and/or Ac-225 treatment, the patients' SUV numbers are much higher than his were.
Not necessarily regretting the decision or second-guessing it, however.
Here's a link to an article in which the Heidelberg group discusses their ideas about the combination: jnm.snmjournals.org/content...
Interesting. My impression is that there still is a lot to learn about the different approaches to this treatment. Early users are part of the trial, but someone needs to be "first" and each patient's experience adds to the larger body of knowledge/evidence.
Nesrine, If you are asking me, then the treatment did not work all that well for my husband -- see more extensive explanation above. But if you are asking Tango65, then I believe he had a very different -- and much more positive -- experience. But he should be the one to provide his experience.
One Lu 177 PSMA treatment took care of multiple lymph node metastases in the pelvis and abdomen. Never had chemo. Only ADT and intermittent casodex. My PSA started to increase after stopping casodex and then stabilized around 0.4. It has been 34 months since the diagnosis of the metastases and 32 months since the Lu 177 PSMA treatment.
He was the one who started exploring Lu-177-PSMA in the US. I chatted online with him about it back in 2015, as you can see in the comments section when I wrote this article about his trials:prostatecancerinfolink.net/...
Anyone been through this Alpha treatment? I am being referred to Heidelberg and have no idea how many treatments it entails and how often. Would I need to stay in Germany on an ongoing basis for convenience? (I live in UK). Thanks all. (salivary gland issue sounds scary but on my PSMA scan there was not much uptake of the tracer in that area so hopefully minimal damage}.
Sriyantra, Hi. We've been there twice, so I'd be glad to answer whatever questions you have. The usual pattern is three treatments, each about 8 weeks apart. The exact timing appears to depend on when the nuclear medicine folks can get the radioisotope -- so there actually were seven weeks between treatments one and two for my husband.
For each treatment, you are admitted to the hospital the morning of Day 1; receive the injection about mid-day that day. You are released early the morning of Day 3.
Because we were traveling from the US, we built in a day's cushion on each end, but that may not be necessary for everyone.
My husband has dry mouth with ACT 225. He carries water with him all the time. Also eats juicy foods. Salads, soups, stews, fruit. Just managed a cruise last week and he loved the varities of food on the ship. Asian and Indian foods work well too because of the sauce.
Siryantra, the cost was about $10,000 per treatment (the hospital cost; that figure does not include transportation or, for us, hotel costs). We had the PSMA scan pre-treatment here in the US.
My husband is not on Lupron. He is, though, using estrogen patches to keep the testosterone low.
Hi, where did you have the PSMA pre screening. University of Michugan refused it since I still have a prostate. would not give even if I paid 5K .Had to do it at University of Heidelberg for 900 Euros. I may need it done before my third treat at U of H. Thanks
Hi. We went to Sloan Kettering in New York City -- this was September a year ago (2018). At the time they had a trial that my husband was able to participate in. I don't know what the status of that trial is now.
Others on this forum have gone to the University of California San Francisco.
We also could have gone to Excel Diagnostics in Houston, Texas -- but again, this was a year ago. I do not know what the situation is now.
I was turned down the test in I think in March 2019 because I have a prostate still. If they do not know you still have a prostate do not tell them. If they know then they must have changed their way of doing things. Indiana University did it for me in December 2019 under research and was paid for by medicare.
I need to know more about the approval at U of M. What is the doctors name . My doctor there was a Dr Alva. Also, are they going to give you the LU-177 and perhaps the AC-225 that I paid for in Germany.
University of Heidelberg I understand developed the procedure.Heidelberg was not bombed. Interesting place. Does U of M know you still have a prostate? They were to schedule my test than a week later they turned me down when the discovered I had a prostate. Are you in Michigan?
Was it hard to get the treatment initiated - who did you deal with? I'm waiting to hear from Heidelberg and there's a hold-up with Marburg where they did the PSMAs scan. I'm just not sure how to hasten this procedure - need help to get this moving because my health is in a difficult situation and I don't know how much time i have to play with.
Sriyantra, Hi. You can start the process now, while waiting for the PSMA results.
The University of Heidelberg hospital is very well organized and has some established procedures. Begin by filling out the information on the "contact form" -- link on the International Patients page (heidelberg-university-hospi.... After completing that form, you'll receive a link to a portal for uploading data (blood test results, scan reports, doctor's notes/reports).
Once the data are uploaded, you'll get an email from a patient case manager. That person forwards your information to the Nuclear Medicine department for a treatment decision and appointment time and then gets back to you. Initially all your communication is through the International Office. Even if you speak with a doctor, you will be requested to start with the International Office.
We found the case managers to be helpful and understanding and quick to reply to questions. Because of the large number of international patients, they do have this process and things work better when following it, at least in our experience.
The Ac-225 treatment schedule and appointment availability depends on when they can get the actinium.
Best of luck and let me know if you have other questions.
Hi there., I arrive on Jan 24 at 9am for treatment. Having a large blast of radiotherapy to my pelvis and hip before I leave)... as I ended up on crutches this past two weeks and can barely walk..also a bit concerned they won’t admit me for low blood work. (Platelets and haemaglogin etc). but we’ll see. Hope I prove to be a good responder to this treatment!
Best of luck! We will be thinking about you and sending good thoughts your way. I do think that they are accustomed to dealing with patients who are not "in the best of shape," especially since some of the early work was with patients who had exhausted every other avenue. Still, one of the first things they will do is to draw blood and run some tests.
Sriyantra, have you had your treatment yet ? My husband is in the ACT 225 programme in South Africa. One of the patients in his group told us when he arrived for the programme, he was in a wheelchair. He is now walking and says he dances everyday.
I have had the Lu-177 four times and am soon to return for a fifth... My understanding is that the Alpha (AC 225) was best for tissue and that the Beta (Lu-177) was best for bone. I just heard a lecture Richard Baum did at MSU:
This is the best overall discussion on the subject I have watched and he also is discussing tandem therapy where they have used both the materials in the same patient at once at his clinic in Bad Berka Germany to good result. And, yes, I too have heard of pretty bad parotid gland response to the AC 225 whereas w/Lu-177 it is 2.3% (according to Dr. Baum).
I need to know info about yr case. My husband exhausted all available therapies. Now we hv two advices one is taking lutiteum and another to opt for actinium. The cancer is in both soft tissues and bones
my husband had treatment with Lu177 and Ac225, so called tandem therapy in May for the first time. Before he had only Lutetium 5 cycles.
After the 1st cycle of Lu he became much better, after 2nd was still in a good condition. Bone metastasis almost disappeared. After 3rd cycle, the doctor decided to remove Zytiga from the treatment (my husband had only ADT therapy, no chemo). After this, he started to be worse, he took 4th and 5th cycle of Lutetium, but without improvement. Then the doctor decided for the Lutetium 177 with Actinium225 which he had in May, but no improvement, dry mouth.... And one week ago, my husband died. He died since he had metastasis in the skull which scan also showed before, but we were not informed that these metastasis can be deadly since it influences the brain (not like metastasis in the hip, or pelvis...). They did not tell us to make external radiotherapy for the skull until my husband started to feel the pain in his head 1 month ago, but there was no help for this. This is my bad experience.
So sorry to hear this. I can totally empathize with you as I too have tumors in the skull and they were considered to be benign. Only much later, was I told that they were cancerous. Even then several MO's whom I consulted, did not ask me to do radiation. After I started getting severe pain in the skull, I consulted with two radiation oncologists and had my skull radiated. The pain has now gone. Thankfully.
HI, I am in process for the combined therapy at the university of Heidelberg.Finished 2nd treatment a week ago. So far great results. Psa is now 80. was told I have a high reception of the PSMA and a doctor said they will melt my cancer like butter in a hot sun. To early to get results of 2nd treatment . Doing tests soon.Edema is much better and urine folow is markedly improved. So far so good.
Did you get fatigued? My hubby is 4 weeks out from first treatment and super fatigued. He is exhausted to even walk much so wondering if it's a side effect.
Also did you have edema from first treatment. My hubby has that too.
I do have fatigue. Need 10 plus hours of sleep. Psa is now 8 after 3 weeks after 3rd treatment. Was 265. Have to do PSMA scan in the US and send to University of Heidelberg assessment of 4th treatment is necessary. Looks like I have to go to Germany have scan since I cannot find any place in the US that will do it. U of M turned me down .
My PSA is at the lowest it has been in almost 20 years.After 3 weeks of 3rd treatment it is 8. Should go lower. 6 weeks is a better test result. My PSA was as high as 740 when I was on the trial ESK981 at Karmanos cancer in Detroit. Failed trial and was refused the LU-177 trial after I was promised it if I did the ESK981 trial.Much to be desired in US. UCLA and U of I will do the PSMA scan and the U of M will not. ??
5 weeks ago my Psa was ONE. Was to do fourth treatment but Lufthansa stopped flight to Heidelberg 3 days before going. Re-scheduled for May 7 but does not look good.
Hello, I was just reading all the post learning about everyone experience. Im trying to see which Hospital to go to in Germany. It is all so confusing. We contacted Book health and she gave us a very high price of 25.779 euros and the web site for most of the treating hospital was less than 20.000 euros. My question is it better to contact hospital directly or go with a company ? We were expecting around 20.000 euros from personal research that was done.
RobLee just went to University of Heidelberg. He is on this also. I advised him. I think he is back and says all is locked down in Germany. Contact him as he may be able to help with recent changes. I will still get back to you with more.
ToniTbird, I can tell you what my husband's experience was; lewicki can provide his experience, which may have been quite different.
If you've read the earlier posts, you'll know that my husband was not a good candidate for the treatment, which is probably why it impacted him the way it did. And, yes, there was considerable fatigue. It seems like any treatment takes its toll on the body. The significant damage to the salivary glands made it so that he did not want to eat, which exacerbated the fatigue.
He did not, however, have any edema that was new to the Lu-177/Ac-225 treatment. He always had some around his left ankle, but nothing really significant.
Thank you for your response. My hubby's fatigue is from low red blood cells so tomorrow he's getting a blood transfusion. Hopefully that will help. Also he found out yesterday that he has bronchitis so that has added to the fatigue. Poor guy....
My husband's numbers started to climb first of January and needed treatment every 6 weeks and not 8 but they wouldn't do it so cancelled travels and treatment. It was devastating! The treatment worked but needed to be sooner. Most cancer was in the liver now so we needed to address quickly. We started 5FU at Tulane and it wreaked my husband! Mouth sores and couldn't eat at all. Miserable! It worked for about 3 weeks and PSA started climbing out of control. He passed away February 26th. Hard and long battle fought to the last minute! I miss him him terribly! 56 is too young! God bless.
ToniTbird, I am so sorry to read about your husband's death. I can relate ... it's been a year since mine died, and I still sometime expect that he'll just walk in the door, as if he'd been on a very long vacation by himself somewhere. That may not make sense, but the point is to be kind with yourself and expect the sense of loss to stay with you for a long time. Know that you -- and he -- did everything you could. Hold on to the love.
Thank you for your kind words. It is a journey I wish on no one. I miss him terribly. I also keep thinking he will come home from work at lunch time. My little dog runs and looking for him. We didn't have children so it's been very lonely. One day at a time. Sorry for your lost too.... 😪
ToniTbird, thank you. One of our dogs did the same thing for the longest time. I'd come in from work and he would sit and look for one more person to come through the door. We also had no kids; the dogs have been a good comfort. And, yes, one day at a time.
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