Breast Cancer Now Forum

Jaybee makes a very good point about the isolation of private treatment as my chemo unit was fairly quiet, but on the other hand I can see my onc whenever I want, and often for up to an hour at a time. I send her research and she will go away and read it and evaluate it for me. She has also given me her mobile number so I can text her if I need to. The same applies to any other consultants I have been referred on to by her - radiologist, liver specialist etc. I have also been able to access treatments and drugs that were not at the time available on the NHS (Avastin, cyberknife, denosumab) - as I have secondaries I feel this has made a big difference to my prognosis. ... View more

Thanks Magda - I will. ... View more

Bertie the funding changes at the end of this year - there is a lot of uncertainty about what will replace it: http://www.bbc.co.uk/news/health-21030986 ... View more

I had a bone and CT scan after my WLE after so many nodes were found to be cancerous. ... View more

Jenanne you raise a very good point about aggressive treatment of isolated bone mets - or any other mets for that matter. I had to fight a little to get this - but am very glad I did as I'm still here 4 years on doing really well. Those with minimal mets are classified as having oligometastases, and there is research that shows if treated aggressively the outcome is significantly better than the standard NHS wait and see approach. Interestingly the MD Andersen Centre in Texas, which has the best cancer survival rates in the world, takes this more aggressive approach - they also promote an integrated approach including diet and lifestyle issues - they are light years ahead of us. ... View more

A wonderful, thoughtful article - thank you. ... View more

Yes - do check. It could be that your dentist isn't fully aware of the risks. I have been lucky not to have any dental problems but I know my dentists considers any work a risk. ... View more

Yes there are numerous trials of slightly different systems, so it's quite confusing. I'm hoping that it will become standardised eventually, but as most of the work is being done in the private sector that may not happen. ... View more

I've had to do quite long breath holding for cyberknife preparation (inserting the gold seeds)- I don't know how it compares to the procedure for conventional rads. One thing I would say is make sure they give you time to adjust your breathing between each go - the radiologist was rushing me so that I had only just released the breath when he was asking me to hold it again. I asked him to allow me 3 or 4 breaths between each hold and that made it a lot easier. ... View more

Oh no, this is just terrible news. Sarah and I were diagnosed stage 4 at the same time, and had planned to go to Penny Brohn together after we finished chemo. I went but she wasn't able to come as her prognosis worsened and she seemed on perpetual chemo, so we never met in person. Sarah was a lovely presence here - so creative and whimsical. I'm so very sad to hear she has gone - my condolences to her family and all her knew her. finty xxx ... View more

Furry Jen - yes of course. PM me and if you want to chat on the phone I can give you my number. Sorry for the delay in replying - I saw in Active Topics that you had commented on the thread, but when I went to the thread I couldn't see your comment until today - really strange. Has anyone else had this prolem? ... View more

Furry jen - I forgot to reply to your question about the green stuff - it's made from spirulina, which seems to be a form of algae. Many people take it in its pure form as a health supplement, but to be used for PDT it has been chemically engineered - but I have no idea what the changes are. It does however seem to be completely harmless to healthy cells - neither I nor anyone else that I've met who has had the treatment has had any damage to healthy cells. ... View more

Julesie - I took the decision not to start capacetibine after my liver met dx, and instead had an innovative treatment called whole body photodynamic therapy. I made a long post about it a couple days ago explaining what it is and how it works- " The future of cancer treatment - no more chemo and rads?" ... View more

Furry Jen - the trials are in Melbourne, and are just on prostate and bladder cancer. I don't know when the treatment will be available generally in Australia. At the moment it's just China - but it was very straightforward. I went on my own (leaving my husband with the kids and dogs) and was very well looked after - met at the airport and had a driver to take me to and from the clinic everyday, and a translator on call 24/7. Everyone at the clinic is very kind and helpful. It was a bit like a holiday - stayed in a 5* hotel at a fraction of the cost you would pay in Europe, and met up with some of the more mobile patients to do some sightseeing. BlueFox - please see my comment above explaining the difference between the generic and specific terms NGPDT. I've seen these comments on wiki and other mainstream websites, but they don't link to anything specific to NGPDT in Guangzhou. I've searched extensively and been unable to find any dissatified patients. Other less scrupulous clinics are trying to associate themselves with the Guangzhou clinic by using the same or similar name. The treatment is new - it will take some time for the wider medical community to accept it. For instance the stage 4 lung cancer trial showing 94% survivall at 1 year and 56% complete remission has only just been released. Further trials are expected to report soon. The comment on NHS Choices is odd considering the NHS is itself trialling NGPDT, see links in post above, so they clearly believe the treatment has potential. Other completed trials by the NHS on pancreatic cancer have been positive. ... View more

I dipped my fingernails in ice during chemo - including Tax - and had very little problems. It works in the same way that the cold cap can save your hair. It's not very pleasant but it seemed to work. ... View more

Just spend a few minutes googling to see if my guess about the new clinic in Dubai was correct - and found this: http://zilingyuying.files.wordpress.com/2013/04/ngpdt_mrfan.pdf It's a very interesting testimonial that mentions that the new clinic is in fact in the Lebanon! Oh well! ... View more

iswhiz - this is where I had my treatment: http://www.nextgenerationpdt.com/ The clinic is in Guangzhou (2 hrs from Hong Kong), but they have since opened another clinic in Beijing and I believe are about to open another one in the middle east - I'm guessing Dubai. You have to be a little careful because the clinic has TM'd the name Next Generation PDT (NGPDT), but it is also being used as the generic term for this type of treatment by other clinics with less advanced technology. I did a lot of research before I went as it's a pretty big step, and it does sounds almost too good to be true. But they've been open 7 or 8 years, have treated several thousand people, and I was unable to find anything negative about this clinic on the internet. I also spoke to people on other forums who had been there. Interestingly they dont advertise, other than having a website and a few patient testimonials on Youtube. Most of their patients are there from word of mouth, knowing people who have been treated successfully. Lynn - I was diagnosed stage 4 from the outset, nearly 4 years ago. As far as I know I am in remission, my next scans are in Sept so I will know more then. I certainly feel really well - I've made a lot of lifestyle changes and feel better than I did before dx. I'm not relying on this though, I'm very careful about my diet (vegan) and have also done quite a bit of research into cannabidiols, which show great promise in treating breast cancer. See here for an intro: http://www.prnewswire.com/news-releases/can-cannabidiol-cbd-fight-metastatic-cancer-according-to-the-latest-research-the-answer-is-yes-170681736.html. I use CBDs on and off for about 6 months a year. For those that want to speak to their oncs - be warned that they are unlikely to have heard about whole body PDT. Most will have heard about the localised treatment for skin cancer, and will tell you that it isn't suitable for BC. Several people I met in China were there against the advice of their oncs - but they are still alive when their oncs had nothing more to offer them. I'm lucky that mine has been very supportive throughout and has been open to several new things that I've pushed to do - and as she runs one of the biggest BC units in the UK at a major teaching hospital, maybe word will start to get out. Lizcat, saffronseed - thank you. Mosiecat - let's hope so! finty xx ... View more

More details of NHS early stage PDT trials at UCH - these trials are using a less advanced PDT system than that available at NGPDT in China: http://www.uclh.nhs.uk/OURSERVICES/SERVICEA-Z/CANCER/CANCERTREATMENTS/PDT/Pages/OtherPDTworkatUCLH.aspx ... View more

jojo that link is misinformed and conflates NGPDT with sonodynamic therapy which doesn't work. There is also some confusion with the term NGPDT which is used both in a generic sense and is also the name of a specific clinic. There are clinics offering old versions of PDT (one in Hampshire specifically), but there is wide variation in the effectiveness of the PAs used. It's odd that a NHS website would get it so wrong - the NHS has itself trialled NGPDT with success on pancreatic cancer patients, and has been in negotiations to import the Chinese system. Edited to add a link to the NHS study: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1773165/ ... View more