Lu177/Act225 Heidelberg

[Miguelnumerouno]

Apologies for late reply on this to you all and I'll do so as a block/ bullet point on the logistics of getting the above and what actually happens when you do.......there is a wealth of information on the net regarding the treatment which I have now had and I hope some simple points below will assist those following :

Contacted University Hospital Heidelberg Tuesday 5th March on their International Page and started uploading documents, scan reports, blood results etc. to a personal page . You will be issued an IO (International Office) number for all communication. DO NOT WASTE TIME trying to phone.....follow their procedure to the letter....the page is in English and easy to follow and you will NOT further matters unless you do.

Couldn't get my last scan sent from London Clinic so did a Royal Mail signed/tracked job received by them 8.40am Monday 11th. E mail to me one hour later that I would have plan , price and appointment within 7 days. This was received next day on 12th for treatment 18th March.

TRAVEL

UK to Frankfurt by plane about £370 . Train direct from airport to Mannheim, change required for Heidelberg....there are a number of stations depending upon where you are staying.....I travelled Sunday 17th March and alighted at Hauptbahnhof Heidelberg, main, and as walking through exit concourse could see Ibis Hotel on right . Rooms there more than adequate and breakfast very good for 12 euros.

TAXIS

Directly outside hotel...11 euros to Kopf Klinic ( well known to the drivers) ....ten , eleven minutes at 9am.

REGISTRATION

Told to go to 4th Floor Nuclear Medicin. REGISTER FIRST : Main door ....ahead and 50 metres on your left ...glass block with lots of shrubbery around it above main door of which exhibits a clear numerical sign for a ticket which you collect and wait for that number to be displayed . 15 minutes documentation .

CAFE

It's on the ground floor if you wish to top up some foodstuffs, fruit drinks.

STATION (ward)

4th floor....you will be allocated your room with wash basin and WC ....shower is some 20 metres away. Bed, desk, chair, TV limited English. Fill in dietary requirement sheet .

FRIDGE ......No.

WINDOWS

These are ' tilt and turn', ie you can open them fully inwards and you will need to ....rooms are in full sun all day so I moved a chair up to the open window and got a tan!

EXCERCISE

You will be in the room a long time.....I actually paced the room and ensured that the fresh air flow as above was there.....minor point but important I feel. You will not be let out of the room for walking nor anything else.

CANNULA

Following arrival at 10am cannula inserted and drip. Meet Doctor in charge of you.

INFUSION

About 1pm of Lu177/act225.... Takes 20 seconds....two phials by same Dr.

MONITORING

Frequently for first 24 hours....blood pressure in particular.

FOOD and WATER

Food supplied....it's ok....bore no resemblance to the diet sheet I had filled in but I had additional with me. You will be encouraged to drink plenty of water which they will bring you....still or gassed.

DRIP

You will stay on that until late evening first day.

SCAN

Following 7am breakfast Tuesday and radioactivity sweep , downstairs to where you will be left with radiologist's for full body CT ......you will be given an image of same to indicate treatment distribution.

Back to ward meeting with Dr discuss scan etc and further drips / monitored through day.

THIRD DAY

They will want you to leave early ( no later than 9am) and will issue a report for the airport ( security.... I had no problem) together with synopsis of treatment given and test schedule.

HOME TESTS

Full bloods and PSA after 10/14 days then 4/8/12 weeks after treatment.As with others there will possibly be a rise in PSA initially but others may indicate stability in one or indeed even response. These results are to be e mailed ( info . on sheet) back to them for:

FURTHER TREATMENT

If it works there should be a fair indication at 4 weeks with PSA decline.....continue monitoring and send results. Decision made for further rounds and if appropriate, revisit about twelve weeks for PSMA / Pet scan additional infusion. Maybe 3/4 visits but this is very individual.

COST

Without PSMA/ Pet scan 13150 euros, about £11500. I have not been quoted for the 12 weeks scan.

LANGUAGE

Certainly the Doctors have very good English command and some of the other staff too. I speak a little German and you will find that those who can't speak English will have a translation app on their phones......put one on yours too and you will not have a problem.

VISITORS

I travelled by choice alone : your visitors ....and staff ....will be behind a radio protective screen built like a high breakfast bar within the room . I found myself very tired first 36 hours but that could be travel, the occasion coupled of course with the treatment I am already on so very happy with my phone, iPad and a book ( free good quality wifi in the room) and a comfortable bed !

RELEASED

" Bailed" at 9am Wednesday after leaving my case there on the ward for collection later and into the fresh crisp air rolling along the banks of the Neckar along which I walked and sat for an hour at exactly the same spot where I had been as a young boy learning German nearly 50 years ago with all ahead of me......you can only imagine the thoughts but then off for coffee with a very positive step knowing that Mission One had been accomplished!

FEELING:

lower back consideration....nothing startling and the " feeling " is dissipating. no nausea etc and just going out into the sun in Tenerife when I send this.

As said to one gent....this is NOT AS DAUNTING as it may appear. The simple key is research....know where you are going.....physically that is.....Google maps, images etc, what the treatment plan is and how you are likely to feel....you will find the staff are all particularly helpful and what's 72 hours in this lot anyway.

Very best regards took one and all!

Michael.UK

[NPfisherman]

Thanks for your informative post... Hope the treatment works extremely well for you...

All the best,

Fish

[Hidden]

Very informative and helpful. I appreciate having a better insight into the logistics of the treatment. It makes it feel less daunting.

[Tall_Allen]

Thanks for your thorough report - do you know if they have a system for processing/holding waste or does it flush into the sewer system?

[GP24 in reply to Tall_Allen]

"..... - do you know if they have a system for processing/holding waste or does it flush into the sewer system?"

The Lu177 treatment is done in nuclear medicine departments and they have to collect all waste water and wait until it is save to put it into the sewer system. Therefore they have signs in the shower to please use as little water as possible. They will also scan all your clothes and shoes when you leave the hospital at the end of the treatment and keep the ones that are still radiating.

[footballwestham]

Miguelnumeruno

I am getting my PSMA scan tomorrow at the London Clinic

Then my journey starts getting all the right paperwork in order to send to Heidelberg and hopefully to go out there in June and do the same process as yourself

Very very informative

Peter

[Miguelnumerouno in reply to footballwestham]

Very good.

I will be putting a little more on that thread....basic stuff so check in on that.....in the meantime my advice to you :

1)Ensure that you leave The London Clinic with two copies of the CD of the scan.....you will have to wait 40 minutes longer but they will give them at no additional charge. One copy you will supply to your consultant here I suggest.

2) Register on The International Page that I have previously mentioned....( before going) see then whilst you are at the Clinic in London if you can get them to directly upload it to Heidelberg.....if you try to do it afterwards you will be dealing with too many departments = nightmare.

3) Para 2 may need a line in the report from your referring consultant : please exchange scan details to etc ( under international ref etc). .......you could do same with the reports but you will have them 24/48 hours after London.

4) I didnt do the above ....as you have seen...I sent a copy of the CD by Royal Mail but thankfully it was duly received.

Best regards.

Michael

[The_Don5 in reply to Miguelnumerouno]

I notice you travelled alone , Can others accompany you i.e. have you sufficiently flushed the radiation out of your system in the 3 days you are at the hospital being treated?

[Sriyantra in reply to footballwestham]

Can you tell me the cost of this in London? I live in the UK but had my scan in Marburg in Germany (before going to Heidelberg months later). I paid £1800 in Germany for the PSMA scan.

[blet]

Thank you for the information. And wishing you luck with your treatments.

[j-o-h-n]

To Michael U.K.

Wow.... It was like I was there with you taking the scenic route. Thank you, you're a Gem.

I almost cried thinking about you "along the banks of the Neckar which I walked and sat for an hour at exactly the same spot where I had been as a young boy learning German nearly 50 years ago with all ahead of me......you can only imagine the thoughts".

Life is so weird.... Sometimes when I go to Memorial Sloan Kettering Cancer Hospital, I think about the many times I drove past it and never ever thought that one day I would be a patient there. So with that, I wish you -

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 03/31/2019 3:11 PM DST

[NWLiving in reply to j-o-h-n]

We did the same with driving past Seattle Cancer Care Alliance for many years. I remember thinking that there must be a lot of money in cancer treatments for such a nice new building. I had no idea....

[j-o-h-n in reply to NWLiving]

Life is so weird.. If we only knew.... but maybe, as they say "ignorance is bliss"...

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 04/01/2019 1:34 PM DST

[Miguelnumerouno]

👍🏻😉

[PhilipSZacarias]

Excellent summary and guidance. Much appreciated. Phil

[Engraver68]

Hi Michael

Great report! Can you pass on info re what stage you were at and treatments so far before the L177. I

am considering this line of treatment when current treatment starts to fail (Zytiga & Zolodex). I had made contact with Heidelberg a few months ago but my consultant in UK was reluctant to refer me as current treatment is working he said to wait until this fails

[bobdc6]

Excellent post, I'll file this for future reference.

Thanks,

Bob, G9

[Sriyantra]

I just had the same experience. Although my Lufthansa flight from Heathrow to Frankfurt was £180 (no check in bag). I stayed in a wonderful hotel right in the center of town (between old town across river and newer shopping districts) overlooking the river - it’s called the Panorama. It includes the best breakfast buffet I ever had for 120Euros a night. Wonderful staff. Great coffee. 😜

Did your side effects ramp up after you got home.. mine did both times. I am utterly wiped out - intermittent nausea, crazy weakness and fatigue and generally zombie-like.

[Sriyantra]

Also, maybe you missed the post I made a day or two ago? I showed my scan results after first treatment in January: healthunlocked.com/advanced...

[Hidden]

Big help. Best wishes for your next treatment!

[RyderLake2]

Hello,

Like so many others I found your postings very helpful. I have booked an appointment with the Department of Nuclear Medicine at the Universitatsklinikum des Saarlandes in Homburg, Germany. It has been five months since your two posts. I do have a couple of questions. First, how are you doing? Second, how many subsequent visits did you make to Heidelberg? Did they offer Actinium on subsequent visits? For all of us following in your footsteps, we really appreciate any information you can provide. Many thanks!