Our Appointment With Paul's Oncologist - Advanced Prostate...

Advanced Prostate Cancer

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Our Appointment With Paul's Oncologist

MelaniePaul profile image
14 Replies

Hi everyone. So yesterday we had the appointment with the oncologist here in Dublin. And, while we were waiting to be called into his office, we got an email - the long expected email - from Bad Berka in Germany regarding LU-177. They offered us to go over to Germany next week to get the first treatment done. How would we be able to do that at such short notice? Anyway, Paul's PSA has gone down from 11 to 7 and the oncologist recommended what we had already thought ourselves: that it might be better for the moment to leave things as they are and to keep doing what we are doing. So we will get another PSA testing done next month and in July and then get a good sense of what the PSA is doing. I asked the doctor if we could get another scan done. But he - typically for a conventional doctor and their as I find often very scientifically black and white view - said that, unless Paul had symptoms, it wouldn't be necessary to do another scan because the PSA was dropping. Personally, I disagree with that. I think it would still be better to do a scan as well. But I didn't argue. For now we are happy with the way things are.

Paul has also started, thanks to your advice Alan, to take Aberaterone closer to meal time. He takes it at 6AM now and has breakfast around 8AM. That might help with the intake of the active incredient.

Best wishes to everyone!

Mel and Paul.

14 Replies
Neal-Snyder profile image

Mel, isn't the abiraterone supposed to be taken 1 hour before or 2 hours after meal? So there's no reason to take it farther away, because it becomes less effective. Before abiraterone failed me recently, after almost 3 years, I was taking it closer to a meal than recommended. You have to make sure you're having liver function tests done regularly.

TommyTV profile image
TommyTV in reply to Neal-Snyder

I normally have breakfast at 9 am, so I then take Aberaterone at 11 am, and lunch at 12, which has worked for me for 5.5 years. PSA started at 600+, currently <0.1.

MelaniePaul profile image
MelaniePaul in reply to TommyTV

That is wonderful! I hope it will stay like this for a long time!

rococo profile image
rococo in reply to TommyTV

Good job on your regularity, 2 hr. after and 1 before. For 5.5 yrs might be the best.

TommyTV profile image
TommyTV in reply to rococo

Had a meeting with my Oncologist this morning. There is going to be an announcement in the next couple of weeks about the Abiraterone arm. I got the feeling it's really good. He said to me, "you bought a raffle ticket and won first prize" regarding my selection for the Abiraterone arm, G.

MelaniePaul profile image
MelaniePaul in reply to TommyTV

Yes, it is an amazing drug. And the side-effects are so managable. Yes, weakness, tiredness, a lot of sweating especially after meals, but it is all well managable we think.

MelaniePaul profile image
MelaniePaul in reply to Neal-Snyder

Yes, Paul was always very careful in case of side-effects of the Aberaterone. I have always told him that the closer to a meal the better, as long as it is still at least one hour before mealtime. But it needed the doctor to confirm this until he is now doing it confidently.

westseraph profile image
westseraph in reply to Neal-Snyder

Abiraterone/Zytiga lasted me about three months. I was hoping, in a way, just for a year or two from it at least. Not even that. Back to chemotherapy.

Budvar profile image

Hello, would you be able to give me more information on LU-177 treatment in Germany? I've read of previous studies and reports and it seems very promising. We're in the UK right now and its not available and most of the oncologist here haven't even heard of it. Is the LU-177 treatment at Bad Berka part of a trial or private clinic treatment? How much does it cost? Is it available only for castrate-resistant men or castrate-naive with extensive disease as well? Where can I contact them to find out if my father might be eligible? I would greatly appreciate any information you can share. I look at it as one of the great hopes in beating this disease.

Thanks and best wishes as well!


MelaniePaul profile image
MelaniePaul in reply to Budvar

I am copying here a text that I got from the hospital in Munich a couple of months ago and, because it explained the therapy so well and certainly better than I can, I got it translated into English. See what you think.

Prof. Dr. med. Axel Rominger

Klinik und Poliklinik für Nuklearmedizin

Klinikum der Universität München - Großhadern


D-81377 München

Tel.: 0049 89 4400 7 4650

Fax: 0049 89 4400 7 7646

This course of treatment is for patients with metastastic prostate cancer where, despite hormone therapy or chemotherapy, the disease continues to advance. By comparison to Xofigo therapy (Ra-223), patients can also be treated who have metastases outside the skeletal system (e.g. soft tissue or lymph node metastases).

Efficacy of the therapy

Cancer cells, which originate in the prostate, generally carry the prostate-specific membrane antigen (PSMA) on the cell surface. This membrane antigen acts like a magnet as a docking site for specific peptides, so-called PSMA ligands (PSMA-DKFZ-617), which are radioactively marked (Lu-177-PSMA-DKFZ-617) with a therapeutically effective beta emitter (Lu-177). A schematic diagram of a PSMA ligand, radioactively marked with Lu-177, is shown in Fig. 1.

Since the protein molecule specifically binds to the PSMA of the tumour cells, the substance accumulates in the tumour after injection. The substance migrates via the bloodstream directly to the tumour tissue which leads to targeted radiation of the malignant cells (see Fig. 2). In this, the radioactive radiation only extends by just a few millimetres into the human tissue. With this RLT, a higher and more effective dosage of radiation can be aimed directly at the malignant cells than by external radiation therapy.

Diverse clinical studies have shown that with the aid of RLT, the tumour growth can be inhibited or strongly reduced. By means of this treatment, pain can be reduced, the PSA decreased and thus the quality of life considerably improved.

Fig. 3 shows a patient with a good response after 4 cycles of Lu 177 PSMA therapy.

Preconditions for therapy feasibility

Lu-177 PSMA therapy can be used for patients with tumours with an adequate manifestation of the PSMA on the cell surface which no longer responds to other forms of treatment (hormone therapy, external radiation therapy or chemotherapy). Before Lu-177-PSMA-DKFZ-617 therapy can be carried out, the PSMA status and the indication for carrying out this therapy must initially be checked by means of a Ga-68-PSMA ligand PET/CT (standard at the Clinic of Munich University). Apart from further preconditions, which the physicians in charge must check individually before therapy with a Lu-177 PSMA, the patient must, in particular, still have a well functioning renal and bone marrow function. Further investigations (e.g. renal scintigraphy, laboratory tests and others) are generally required, all of which can be carried out at the Clinic for Nuclear Medicine at the LMU Munich.

Therapy implementation and procedure

Treatment takes place at our Therapy Department K0 and takes about 15 minutes (infusion of the radioactive material). Due to an accumulation of Lu-177 PSMA in the salivary glands, patients should be provided with cooling packs 30 minutes before and up to 4 hours after treatment, with which the salivary glands can be cooled and thus the blood circulation reduced. It is expected that this will achieve a reduced accumulation of radioactivity in the salivary glands. To reduce damage to the kidneys, intravenous infusions are administered directly before, during and in the days after this treatment. In addition, an adequate supply of liquids is recommended on the day of treatment and on the following days, since this can reduce the radiation exposure to the kidneys and the rest of the body.

Scintigraphic whole body radiographs and blood are taken in the days after this treatment so as to check on the storage of Lu-177 in the tumour cells and the degradation of the substance. After treatment, the patient must not leave the Therapy Department for 48 hours. After an observation time of around 3 days, the patient can be discharged from the hospital. After being discharged from in-patient treatment, the blood, hepatic and renal data must be checked in the laboratory after about 2 and 6 weeks. These tests can be carried out locally by a GP, urologist or oncologist.

At least three courses of treatment are generally required at 8 week intervals. To check the response to treatment, as well as for side effects and complications, follow-up reviews need to be carried out at specific intervals (e.g. PET/CT, scintigraphy). Further cycles of treatment can be frequently carried out with good response, respectively stabilization of the disease and continuing good storage in Ga-68-PSMA ligand PET/CT, insofar as the blood count and renal function permit.

Complications and side effects of the treatment

Past results indicate that there is no reason to fear serious, acute complications. Despite the greatest care, side effects and complications can however occur with Lu-177 PSMA therapy. Since this therapy involves an individual attempt to heal with a drug that is not approved, the occurrence of as yet unknown risks, side effects and complications cannot be excluded.

The following side effects and complications are currently known:

General side effects and complications:

• Fever following the therapy

• Allergic reactions and even an allergic shock can theoretically occur whilst the substance is being administered (up to now, this has not been observed as yet for this treatment)

• Nausea, vomiting and loss of appetite

• Occasional slight loss of hair in the weeks after treatment

• In a few cases, changes to the sense of taste after the RLT have been noted

• Drowsiness and fatigue (can last for a few weeks after the RLT)

• Special side effects and complications:

• The number of red blood cells (erythrocytes), platelets (thrombocytes) and white blood cells (leucocytes) can decline after treatment. For this reason, the blood count must be checked 2 and 6 weeks after treatment. In individual cases, after repeated treatment, a long-term, in rare cases also a potentially fatal reduction to the bone marrow function with the need for a blood transfusion may arise.

• With repeated treatment, a restricted renal function may arise, which is why this must be investigated before any treatment. In individual cases, after repeated treatment, a permanent loss of renal function can arise which will necessitate dialysis.

• With repeated treatment, a reduction in the production of saliva with a dry mouth may occur. This may result in an increase in the occurrence of caries. Changes to the sense of taste may consequently occur.

• In rare cases (despite treatment with cortisone), in the initial 72 hours after treatment pinching effects may arise in the spinal region due to a temporary swelling of large, extensive metastases.

• In principle, exposure to radiation includes a risk of secondary malignancies, although these might arise, if at all, many years or decades later.

• Since long-term experience is not available, side effects may arise that are unknown at present.

• Important conditions for patients:

• On the day of treatment, several litres of liquids should be drunk so as to keep the stress on the kidneys and the radiation exposure on the rest of the body to a minimum (accelerated excretion).

• About 30 minutes before and up to 4 hours after treatment, the salivary glands should be cooled by means of cooling packs so as to reduce the circulation of blood. It is expected that this will achieve a reduced accumulation of radioactivity in the salivary glands.

• Unfortunately, when staying as an in-patient in Therapy Department K0, you are not permitted to receive any visits. Only in exceptional circumstances and after prior consultation with your physician, may you leave the department during the initial 48 hours after treatment.

• After you have been discharged, your relatives will not be exposed to any dangerous radiation risk from you.

• If you experience problems after treatment, irrespective of type and severity, you must immediately notify your physician.


MelaniePaul profile image
MelaniePaul in reply to Budvar

And here is another link you may find interesting, where patients talk about their experience with LU:


Budvar profile image
Budvar in reply to MelaniePaul

Thank you so much MelaniePaul. Very useful information. From the information provided it looks like my father would not be eligible just yet. I will try contacting them anyway and see what they say. Keep us updated if you guys do decide at some point to go get the treatment in Germany. It looks very promising. Again thank you for taking your time to share. Good luck!

MelaniePaul profile image

Hi again.

Oh yes, I would definitely contact them. Probably they will ask you if you could provide them with your dad's medical history, they will actually send you a long form which partly can be filled in by yourselves but which in some part has to be filled in by the oncologist as well. It helps them to find out many things about your father before your appointment. If where you are you can get a PET scan done, it may lower the costs significantly. There is no such thing provided here in Ireland, so we would have to go over to Germany to do the PET first which would show whether my husband is eligible or not, and the PET alone is I think 5,000 Euro or something like that.

Good luck with everything!

And we will keep you posted.

Budvar profile image
Budvar in reply to MelaniePaul


Hes almost finished with his chemo treatment. The oncologist mentioned something about getting a CT scan afterwards and the hospital where he has his chemo has a PET/CT scanner so maybe he meant both. Anyway Ill ask them as well next week when he has his last infusion. That would save a lot of money. Wow it's a shame they dont have PET scans available in Ireland yet. It would be very dissapointing to travel all the way to Germany pay 5k and then be told you're not eligible. Im really dissapointed how slowly new treatments are developed. I think so far Lu-177 PSMA is only available in Germany, Australia and a new trial starting in the States. It might be quite a while before it comes to the UK/Ireland. Did they mention how much one treatment would cost?

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