Hello ladies
i have been in contact with the Hallwang Clinic in Germany, who have come back to me with immunotherapy treatments for my bone mets.
The treatments recommended are very expensive and I am not sure if they have been approved and tested. It’s all so confusing for me, and the treatments sound scarier than cancer.
Does anyone know anything good or bad about the Hallwang Clinic?
xxxxx
Hello giedre
It’s nice to hear from you and glad u ok. I have no knowledge on this clinic but have looked at their website etc.
I think “downbutnotout” who is a regular here is in Germany at the moment …maybe marirose has more info and a contact e mail address for her …don’t know if its the same clinic.
It’s very much choice but its certainly going to be very expensive and you need to be sure that the treatments are not available in Australia in a private clinic as it would be less travelling!
Anyway whatever you do …please keep in touch with us.
Hugs xx
That sounds a good idea to make a personal treatment of your original tumour as I did read somewhere there are hundred of different sorts of breast cancer types. I think the main thing is to get the right treatment in place.
I think I read on their review they use chemo in heavier doses than conventional hospitals and sounds quite severe.
It’s a pity that you can’t find someone that has been there and has success. There used to be a lady here called FINTY that went but she is no longer active here on this site.
Anyway hugs and hope u make the right decision.
That’s a really good phone call and put your mind at rest that it won’t be chemo. It sounds like August will be a good time for you to go as well. It’s quite a long stay 21 days and so hopefully you will not be alone all that time.
Hugs xc
Giedre.
We all get scared …soon as I go into hosp (even for the bone inj) or dentist …I start shaking and can’t wait to get out!
I just hope it all works well for you but keep visiting us here in the meantime
Hello ladies
Yes Carlolyn, twas I who went to the Hallwang. I’ve just come home after nearly 3 weeks (only planned a 4 day visit to get a fresh biopsy to have the screening done initially). My skin mets had begun to spread rapidly in the days before my trip and by the time I had my consultation they’d spread further than previously so it was decided the best thing was to stay there and have a quick dose of chemo to get it back under control and then go straight into the immunotherapy treatments once the screening results were in.
Giedre, I totally understand your fears, and I asked about adverse reactions because my onc at home was worried in case it sent my immune system into overdrive and caused fresh problems. I was reassured by the clinical director during the initial phone consultation but having met him in person I can’t over state how impressed I am with him. The clinic is a very friendly place, the staff are lovely and helpful and you soon make friend with other patients. I have a quite a few new friends now and we’re going to keep in touch. There was a lady there with her husband - from Australia - but I only met them the morning I was leaving so didn’t get to exchange details.
I felt well throughout the treatments - they give lots of supporting medications, like liver detox and lots of others, which I suspect helps to keep you feeling well.
In the scheme of my finances, it is very expensive (but it depends on what treatments are needed because it’s targeted to the individual) but in terms of my life and what they potentially offer, I didn’t consider it to be such a huge amount for what they’re offering. It came at a time when I’d just got a lump sum from my ill health retirement so that gave me the means to do it, otherwise it just wouldn’t have happened (some people are there via fundraising efforts). You do need to factor in any extras that you may not have thought of at first - such as my bloods are always hopeless when I have chemo so I needed some GCS-F injections which added to the cost. I also need to go back in about 3 months for a top up. The way I see the cost is that many people spend that much on new cars and holidays throughout their lifetime - not something I’ve done. I’ve had sleepless nights worrying about the money and at one point I lost the fear of the cancer as the fear of the costs took over! And, of course, there are no guarantees it will work, but I feel hopeful that I’m going to gain longer. At the moment the chemo has worked so well that a lymph node which has been very large for months is now less than half the size it was. I’ve seen some amazing things at the clinic and heard very inspiring stories. You could have a look at their Facebook page, there’s a recent, inspiring story about a man who has been treated there.
I wish you the best of luck with it all. Anyway, it’s a lovely area and if you’re well enough there are nice walks. It’s right by the Barfusspark (bare foot park), which is a forest with paths where people walk barefoot (though that is optional). Also, there is some Japanese research that suggests spending time in a forest can boost your immune system - so ladies, get out and about and find a forest to walk through.
X
Hiya dbno.
Thank you for taking the trouble to post such a lovely detailed account of your trip to Germany. I know giedre will welcome it as she is booked for August .
I don’t think u should worry about money as what good is the money if u r ill. …health before wealth …
It just seems a shame that people have to travel to Germany for these things and that UK is lagging behind the newer ideas in treatment plans.
Do they use regular chemo or is that a newer one as well? Hair loss?
Anyway hugs and welcome back.
Xxxx
Thanks Carolyn - and hugs to you too!
The chemo I had was just Abraxane (nab Paclitaxel) but I can’t work out if it’s available on the NHS as only the ordinary Paclitaxel was mentioned to me by my onc. I shall found out next week when I see her. My hair has gone, again. I was going to try the cold cap here but I was in such a panic when I started it over there that I forgot to ask if they do that…duh.
I agree that it’s a shame that people have to travel to another country for treatment. There were people from all over the world at the clinic, so it’s not just a UK problem. I really wanted to try immunotherapy but had been unsuccessful at getting onto any Phase II or III clinical trials here and there were so many uncertainties with Phase I trials, even just down to waiting for a slot to become available.
I shall let you know how it goes. It’s all a bit experimental but I figured I didn’t have much to lose as I’ve experienced the speed of growth of my mets before and it’s quite scary when you can see how far it’s spreading day on day.
Love and hugs to all ((((((((((xxxxxxxx)))))))))))))))
Hiya. It must b quite scary being abroad and having treatment but hope u had someone with you to support you.
I thought they might have offered one of the newer treatments like ibrance rather than an existing one but maybe they chose the right one for your cancer type and it will be a great help .
Shame about the hair loss though …but it will grow quickly with the warmer weather …it’s a bit like grass …seems to speed up!!
Well no place like home and you will be glad to be back in your own bed and own comforts again.
Take care xxx
Bringing this up the list for deb hummingbird.
It might help.
Bringing this back up for Momo that posted on private forum.
Hi ladies I want to go to the German clinic but when I asked my Oncologist she said it’s not good for me with my Mets being in my liver and it being breast cancer??? Help please xx confused .com
Hiya debs
There are several ladies here that have been and hopefully will reply to you.
My friend in Australia has had treatment there but she has bone Mets and is her2+ so everyone is an individual .
I hope you get some good advice here as its very expensive if its not going to work for you.
Hugs xxc
DebHummingbird - I’ve been to the Hallwang. If you want to PM me I’ll discuss it with you.
Vikkio - I can understand your worries for vulnerable people but I think you’ll find the people who have been there for treatment are very pleased with the way they’ve been looked after and the outcomes. I know my own oncologist is skeptical and worried about me going there. Not everyone is going to have a positive outcome, however, I have met people while there who were desperately ill and a number of them are currently NED since their targeted treatments. The cost is a big downer but some people have enough to cover it. The 19% German VAT makes up a significant part of the expense.
I just found this!!! I actually saw her at the clinic-how amazing!!
mirror.co.uk/news/uk-news/cancer-patient-sent-home-die-9544493
Hello there!
I read this thread with great interest, I am also reading other blogs/threads and there is always sth about Hallwang, too. I already posted it elsewhere, but I also had immunotherapy at Hallwang, now more than two years ago. I had breast cancer and i am Male. That is very rare but just as bad. I have been in complete renission for 2 years now, so I can only speak highly about their treatments, they are indivual and unique for every patient.They performed a tumor-associated antigen test and Next Generation Sequencing on my tumor tissue in order to find the best targeted treatment for me, as these tests show genetic modifications or expression of certain surface markers found on cells. So, in your case a totally different expression pattern could show up, which means there is a different medication or vaccine for you. That is what I like about their approach-it is not one drug for all, but really individual-based.
I also Love that they Know what they do and keep up with research. The doctors there have a profound research background and knows their stuff. I have been to clinics that offer you some Kind of vaccine or so-called immunotherapy without understanding the rationale behind it. I also recommend getting Information from Hallwang Facebook site, they are actually the only clinic i Know that posts real scientific data from ongoing trials and not some opinions or weird data of unkown origin. Good luck! to you all!!
Susan, Diane and Matt,
thanks for posting this information. I have been in contact with the Hallwang but havent pursued anything yet. I have the ‘cost’ dilemma…do i have the initial tests knowing i may not be able to afford more than one round of treatment (if that)…it seems it costs into the tns and hundreds of thousands…have you experienced this? I know you cant put a price on life but you can either afford it or you cant. I am currently waiting to see if i am eligible for a trial involving liquid biopsies so maybe this is linked to immunotherapy??
I dont want to wait until i’m too ill to travel to the clinic but dont want to rush into things. Do you mind me asking where your mets are/were , what treatment you had and how long it goes on for??
I have been in touch with a couple of people who have been and its great to hear from some more, especially Matt as you are the first male sufferer i’ve come across on this site.
Any further info you could share would be great. best wishes. x
Hi PoshPoodle
I’m sorry to hear of your sister’s situation. It must be particularly disappointing for her after reaching 5.5 years.
I have metastatic triple negative breast cancer and went to the Hallwang Clinic last year. Amongs other things, I had some peptide vaccinations and anti EpCam immunotherapy. I’m happy to chat about it with you if you would like. Have you been on the Forum for a while? I noticed, below, that the Bonita - a BCC moderator - said you need to have posted 5 posts before they allow private messaging (PMs).
X
Hello from Australia
I really have to agree that Hallwang is good and most certainly the kindest and most caring place you could go to for cancer treatment.
I have lobular cancer bone mets and went to Hallwang last August for the first time. They sourced and tested my tumour for what I would respond to, I had immune infusions and two different vaccines. They tested for HLA positivity and so recommended GP2 vaccine which I had in December. My December visit was only for five days, after my two weeks stay in August. Now I will go back in May for a booster, for maybe a day. It is costly in the beginning, but the cost has got less and less.
The trip to Germany from here is the worst part as it’s so long, but hopefully it is worth it.
I have to say too, that I tested negative for Epcam treatment, it’s good that I was tested for it, as if they would have given it to me just like they do everything in sequence here for everyone without looking at a persons response, I would have spent lots more money, had side effects for no useful purpose.
I think Hallwang is very good, and the most caring lovely people.
Giedre
hi feejay, sorry if i’m being thick but what is GCMaf? x