By way of thanks for all well wishes received, to add a little further information and to answer questions from initial post :
DIAGNOSIS
I will update my profile shortly.
WHY HEIDELBERG?
London Clinic , Devonshire Place , were firmly stating in February that Lu177 treatment (no Act225 ....they will not be doing that even when they do get set up ) , would be available there mid March 2019 .......they backtracked on that rather promptly stating that the procedure would not be available for the "foreseeable future " ...no other information forthcoming.
VISION trial is certainly not up and running at Guy's and of course is randomised in any event. I haven't researched other UK hospitals re VISION.
Heidelberg pioneered this lot I believe and from first contact their efficiency impressed me so did not delve into the other clinics. You will have read how quickly matters progressed once I supplied the information.
DOSAGE
2 MBq Actinium225
6 GBq Lutetium 177
RADIATION LEVELS
On morning of second day ahead of leaving Floor 4 for scan on ground floor ( so you are out with general populous of the hospital) you will be scanned for radiation levels. I was told then .....approximately 18 hours after the infusion .....that my levels were below legal limit for release at that time. The 48 hour German law is just what it says ....law ...... and is perhaps over cautionary but so be it . That said when I asked on the afternoon of the second day if I could leave the building for an excercise walk it was flatly refused the nurse stating that I may need to use toilet facilities outside of the unit. That suggests (TA) that the Nuclear Medicine Unit would indeed have to have holding tanks for waste disposal .
One gent asked on visitors in connection with the above. By the evening of the first day.....8 hours or so after infusion ....the staff mainly disregarded the use of the radiation screen that I have described and indeed had to have direct contact for checking blood pressure, replenishing of drips, removal of cannula etc. I cannot see a problem having a visitor within the room.......use the screen for its given purpose and I am sure the staff will guide you if there are time restraints.
DRIP INFUSION
3 litres over first day of " Sterofundin "
ANTI SICKNESS
I was given a five day supply when I left the hospital : I had no nausea nor consideration of it but I completed the course and have had no problem since.
TOILETRIES
Take your own together with towel. Cleansing gels are supplied as is tissue and wipes which you are requested to use on your possessions....phone, iPad etc ahead of leaving.....again cautionary conduct.
ELECTRIC SOCKETS
EU 2 pin round......same as one would use in Spain, France etc.
ADDITIONAL BEDDING
Will be supplied as requested....I needed a couple of pillows and they were brought two minutes later.
RAIL
Connection Frankfurt / Mannheim / Heidelberg.....about one hour......it's all on the net and tickets if purchased at the red liveried DB ( Deutche Bahn) offices are A4 page size with what looks like a big bankers draft on the bottom...being the ticket. The top part details everything clearly .....times , platform, lettered sub sections of the platform....just follow the detail.....very easy. Cost 27 euros each way.....you can buy a cheaper fixed train time ticket for about 21 euros but I'm not sure what happens if you miss the one you've paid for,....ie do you lose the lot. I paid the 27 euros and had complete flexibility of travel.
AND ON A "LITE" NOTE
I made a joke about all I needed further with my supper was a lager : 2 minutes later a glass and a bottle of very chilled " lite" lager arrived !
Hope the above answers the raised points.
Michael UK
Written by
Miguelnumerouno
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Sure....it was an off the cuff..".that's all I need now " comment and hey presto !
I just need this to work now and I will update in due course.
FYI the Dr informed me that they expect " some " response now in 80% of men having the treatment .
The images summary is a front and back of each treatment..lu/act so 4 pics. Not a diagnostic tool but an indication of where the treatment has landed.....mine looked pretty good.
Cheers.
Michael.
Thanks Michael. I think I’m running a couple of months behind you. Could I please ask why you wanted the Actium in addition to the Lu? Also, are you having dry mouth/saliva gland issues? If I don’t get on the Vision trial I’m thinking London Clinic or Germany. Thanks again for the very helpful posts. D.
Hi Michael nice job on he beer! we are looking at Heidelberg and are in process of sending scans... hard disc is way forward the docium medical images don't upload easily. Did you go straight to lu-177 without chemo . I heard some of the german tumour boards that meet in the hospitals can be funny about this?
The general guideline/recommendation is to apply Lu177 after a chemo. I have read that Heidelberg follows that recommendation while many other hospitals do not. You can get around that if your MO writes that your husband is "unfit for chemo". I think nobody thinks there is an oncological benefit for a chemo before Lu177. They just want all SOC therapies to be applied before the use of Lu177.
The general recommendation says chemo is required provided the patient is not "unfit for chemo". So if you have a letter that declares you "unfit for chemo" I see no reason why they should refuse to treat you.
Many patients present this since they want to avoid the side effects of chemo and rather get a Lu177 therapy instead. Which has less side effects than the chemo.
Thanks for writing these reports Michael, they are so informative. I am considering treatment in Germany and Heidelberg sounds like a good place to go.
My PSA is currently 298, up from 61 in Jan and 198 in Feb, currently on Cabazitaxel and waiting to see is there is progress on 17th April after 3 cycles of Cabazitaxel. There was talk of another Bone Scan if PSA is still rising.
I am currently at UCLH and I believe my oncologist also works at the London clinic Dr Mark Linch.
Were you NHS and did they provide any support/advice in you having treatment in Germany?
Did they ask for a form from Your MO for full medical discharge? This is what they have asked us for , kinda worried us coming back to uk and not being actually with a hospital or consultant!?
My NHS team were fully aware of what I was embarking upon in Germany and I was informed that any I would not be excluded from further treatments of any sort in the UK .
Hello Michael i'm now in Köln (Cologne) Germany treating my lymph nodes for 23 sessions i wonder how much it cost your treatment in heidelbegs hospital ,the reason i asked because always the financial trial is not approved in sweden.
HI Michael. I have advanced (Stage 3b primary) PC with 3 bone mets and lymph node involvement. I'm just finishing course of 3 SBRT and 35 salvage radiotherapy treatments after docetaxel, ADT, RP and radical Lymphadenectomy (16 pelvic nodes removed - 7 active). I'm still hormone sensitive with PSA below measurable levels. I now stop ADT and if PSA rises with T normalisation and there is G-PET evidence of avid disease process I have an agreement that I can receive the same Lu177/Ac225 PSMA 617 treatment you have just undergone. Here in Australia this will cost me around AUD 20k so much the same price you paid. I am greatly interested in your progress, which I will follow on this site and wish you all the very best. Harry
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