Hi all, I have been diagnosed with MBC HER2 negative (mets to bones and lymph nodes). I am awaiting a brain CT scan and also another lymph node biopsy.
Can anyone advise if they have heard of the below treatments or have had these treatments ( Chemoembolization and Dendritic cell therapy LANEX-DC treatments with Prof. Dr. med. Thomas Vog in Germany?)
Have you heard of Booking Health GMBH which arranges these treatments in Germany?
TIA
So sorry you have to deal with this lousy cancer! I was diagnosed with E+ P+ BC with bone mets in March, 2004, yes 19 + years ago! Before targeted drugs like Ibrance were around. My way of coping was to learn all I could. I actually stopped at the book store on my way home from the appt when I was given the diagnosis! I attended BC and MBC conferences-NBCC, MBCN, and got training as a MBC advocate. I never could have guessed I would still be here for sooo long. One of the things I have learned is that "survival statistics" are very misleading! They are brought way down by those with very aggressive fast growing cancer, those who aren't diagnosed until the cancer is very wide spread, and those who don't/won't/can't follow treatment plans. Getting a second opinion from a bc specialist onc, who sees only BC patients, is one of the best things to do. If you are in the US, the best places to do that are the Comprehensive Cancer Centers (listed on the website of the National Cancer Institute) I hate to have to say this, but just like with everything else these days, there are alot of phony baloney scammers out there, including actual doctors who have website that site all kinds of great results for very non-standard treatments! The sites you mention scream SCAM to me. Sorry! At conferences I've attended, the long term survivors I have met, 10, 20 even 30 years, all have been on standard treatment. I had only bone mets for over 10 years, then cancer cells showed up in tissue removed from my left ureter (tube between kidney and bladder). It was removed and now I get a stent replaced every 3 months. Later a met on the right cerebellum was found and treated with radiation. A bunch of cancer cells in lymph nodes put pressure on the nerves into my right arm and those were treated with rads, too. 14 months ago, cancer cells in my abdomen created an intestinal blockage and required very specialized surgery, and put me in the hospital for 23 days. A few months later, the cancer changed from E + to triple negative, so treatment options are now more limited. I've done well but it's not easy, but so worthwhile! I got 5 years from first med, Letrozole, and over 9 years from the next, another standard med that I can't think of the name of at the moment. My memory isn't what it was, but the neurologist I saw said that's standard at my age, 77. The rad onc I saw about a month ago reviewed my records like no other doc I've seen, spent a long time talking with me and the most excitingly hopeful thing he told me was that I'm more likely to die from a fall than from this cancer! So, my advise to you is to skip the pllace you mention, ask your onc to refer you for a second opinion, and take standard treatment, stay physically active, and enjoy life!
Wow amazing and inspiring story. It is hard and great to hear stories like yours
I jusr went to the Booking site. It screams scam to me! May actually refer to good docs but will cost you more, take longer, etc. You can do that with your own onc!
Hi PJBinMi, thanks for responding. My cancer is grade 3 so they originally they thought it wasn't in lymph nodes and it's in lot of places with my recent pet scan. How do you manage your bone mets?my onc told me it's bad but small in many places. In jun/jul, this year I was complaining of back and pelvis pains and mri showed nothing. I didn't have a lump around that time until it became very noticeable and seems to be growing quite quick. The problem with ireland is that the health system is overwhelmed. I've asked my oncologist for an opinion on this treatment. Also problem is they keep sending me for more scans. Bit background on my health, I was knocked down by a car 5 years ago which resulted in injuries and possible could have undiagnosed rheumatologist disease as I had psoriasis.
Waiting on brain scan as I've already had bone scan breast mri, CT scan of neck to pelvis, bone scan, pet scan and full mri of spine.
If we have metastatic cancer, bones are the best place! Not likely to die from bone mets! And all those scans are a good idea, usually done soon after diagnosis. It's important to have all that info so the best plan of treatment can be created for your individual needs . When I was first diagnosed, I was told that I had "extensive" bone mets in spine, pelvis, shoulder blade and a rib. I was put on the IV med Zometa, monthly at first and then every 3 months because new research showed that was the best. After a few years, I was switched to a newer drug, given by injection. After over 18 years on these meds, I developed the rare side effect, osteonecrosis of the jaw, so had to stop the bone meds. The ONJ was discovered early, only in one small spot at the back of my lower jaw. It appeared as tiny bit of bone peeking out of the pink tissue. I am able to see the dentist every 6 months and she spotted this. The specialist I saw for it was able to get it under control enough that I don't have more appts but oof course I will call if my jaw gets thoose again. I don't think Ireland is the only place where medical care is suffering! I live in a rural area in the midwest of the US, 50 miles to the cancer center in a medium sized town. The health care system here has been taken over by one big corporation that values profits over patients and the number of front line workers, the people we actually have contact with (doctors, nurses, techs, social workers, etc) have become fewer and fewer. Takes longer to reach them by phone and if urgent care is needed we have to go to the emergency room rather than see our own doctor! Crazy! Makes me very angry! My bones have done well. Only fractures ever were ankle bones when I fell in the ice and snow and all my weight came down on that ankle, so not cancer related at all. I've only had bone pain recently, in my lower back and am able to manage it with lidocaine patches. I hope your oncologist will come up with a great treatment plan for you soon and that you'll be doing well soon. Side note: I'm 1/4 Irish with Irish ancestry on both sides of my family. My paternal grandfather was half Irish with ancestors who arrived in North America in the 1700s. My mother was half Irish and her mother was born and raised in Toronto, Canada. My travel days are mostly over so I'm not going to visit Ireland, something that makes me sad! I hope you can stay active enough to do things that bring you joy and satisfaction!
Hello
Sorry for your recent diagnosis.
Your story sounds similar to mine...I was diagnosed about 2 and a half years ago when a large lump showed up on my mammogram at 50yrs old. Originally from the first localized scans and ultra sound they said I was stage 3 and that I'd have routine surgery/mastectomy and go down that route....but then the investigative following scans showed extensive bone nets. I had an mri for whole body head to toe and bone scans also to get the full picture.
At this time I also got second and 3rd opinions by sending my info to Germany and Israel.
I'm in Cyprus which is a very small island but it has a surprisingly good oncology system. I had part of the original tumor sent off for genetic/ molecular testing...it has a name that I can't remember....this was arranged by my oncologist...and this helps to find the make up of your specific cancer and how to best target the treatment.
Turns out that the recommendations and procedures that I was given were the exact same that both of the institutes in Germany and Israel recommended.
My bone mets are from skull to pelvis through all of my torso bones excluding arms and legs.
Currently all mets have remained bone only and I've responded well to the targeted therapies.
I take ibrance together with two hormone blockers...Letrozole and Zoladex as I needed to have an instant menopause.
I also have Zometa infusions to strengthen bone density and to make a more hostile environment for spreading...and calcium tablets daily.
If you'd like to personal message me I'd be happy to offer any advice or assistance that I can.
Wishing you all the best.
Zoe
xx
Hi AmK, really sorry to hear you have found yourself here.
It is good to hear you are having extensive scans and that your onc is being thorough. I also live in Ireland and 20 months ago was diagnosed with mbc in my right lung, (several tumours). I am Er+ pg- hercept neg. (I had a lumpectomy and node excision, chemo and rad in 2010. ). I take letrozole and palbo (having failed on ribo)
Honestly I have found my treatment managed very well so far here in Dublin (in fact my onc was one of the first in the world to use palbo the drug I am on now).
We DO have some really good people here and are lucky to have access to an array of meds through our public health system, that other countries can only dream of. Saying that the system is indeed under pressure and advocating for yourself, as you are doing, is the best way to ensure your treatment is on track
I sought a 2nd opinion when I was diagnosed and it did lead to a change in my treatment plan, and hospital. I would say that if you feel in anyway worried about the advice you are getting , seek a second opinion. I know this is a stressful time for us all and having to deal with a second opinion doesn't help that but in my case it was well worth it. Also second opinions are also available online or through visits in Germany or the States, if that was a way you chose to go.
Wishing you best of luck with your journey
Kahe
Messaged 😄
There are some groups on Facebook where people have been discussing Dr Vogl in Germany and they speak highly of him. One lady from UK had visited for a course of treatment for the tumours in her liver with a 10% reduction each treatment. Another lady from USA was visiting him to have spinal mets treated.
I don't think it is a scam, but is a private treatment that is not covered by insurance. Whether it is worth paying for, probably remains to be seen.
I have made a note of him and put it in my list of 'Treatments to Pursue if all else Fails'
I need advise 
Can someone answer this question 
Breast surgery for de novo Stage 4
Invasive Breast Cancer her 2 P+ E+1 lymph node Metastatic spread after chemo & Mastectomy 
Is anyone on abraxane. Please share your experience 
