I hope that we can help, even just a little….

It’s been a busy few days…Bear and I had another first. We watched the All Blacks play rugby against Argentina in the Rugby World Cup at Wembley Stadium. Wow! Anyone that knows us knows how important rugby is in our life. To Pete it’s everything. To me, it’s the legs and bums! Ha ha! It was so much fun and they didn’t disappoint. Feeling tired doesn’t matter when you compile the mixture of work and play that we have in our life. And that’s key to living life to full.

Right now, I’m sitting here feeling a little jaded. We returned back from Germany last night at about midnight. Sleep was heavy but mainly due to feeling over tired and also from the effects of having treatment at Dr Nesselhuts. I had the same treatment as I had at the end of July; an infusion of nivolumab, hyperthermia, infusion of B17, a shot of DMSO (which bloody kills my thigh!) Newcastle disease virus, then onto my vaccination using dendritic cells primed with Newcastle disease virus and a shot of ipilimumab. Sounds a lot, probably is and is obviously why I feel a bit hot, have a swollen arm (a great response again according to Thomas) and a dead leg. My ribs are still hurting from the apparent fluid that is contained in that area as Vogl told me but it isn’t helping much when I sneeze or cough! It also hinders my sleeping ability. I’m sure Pete is a bit tired of hearing, ‘Ow’ every time I turn over in bed.

I felt all warm and fuzzy speaking with Thomas Nesselhut yesterday. He is such a great doctor and has really had to fight his way over the years to those who don’t believe and who are trying to stop his practice from succeeding and helping the likes of me. It is so great to hear how he has helped many people and that nivolumab is really giving great results. However there are a few stories of very severe side effects, such as kidney failure and paralysis. La la la la! I didn’t hear that bit.

It’s still remains the fact though, and listen loudly everyone. Immunotherapy, such as what I am receiving; i.e. dendritic cells and nivolumab etc, shows amazing results for those who start having it early doors. So if you have been diagnosed with stage one or two canSer then do as my friend does and visit Nesselhut and ensure your future is bright and healthy. He can almost ensure there will be no reoccurrence. Unfortunately most cases he receives are like me; stage four; where it has metastasised to other organs and remains incurable with limited life expectancy. This makes it a real challenge and sadly he also has cases whereby he literally is saving them from immediate death.

Now money can be an issue; but this year I have seen so much compassion from the general public helping complete strangers out by donating to their cause. It infuriates me that we are in this position that I and we cannot get this treatment here in the UK. All is not lost though.

I may not be able to give you direction on having dendritic cells here in the UK for triple negative breast cancer right now but I can point you in the direction of clinical trials for nivolumab and ipilimumab.

http://www.cancerresearchuk.org/about-cancer/find-a-clinical-trial/a-trial-nivolumab-ipilimumab-people-with-solid-tumours-that-have-spread#undefined

Make sure you read the information under ‘Who can enter’. Then approach your doctor and ask them to refer you. I am cheeky as you know and also tried contacting them myself but as I had immunotherapy already they will not accept me. You must be forceful and if you haven’t heard anything for a while once the referral has been sent, then do chase it up. Be a dog with a bone! Ha ha….

I hope that helps a little and please do let me know if you are successful or would like to share any other trials that may be useful for triple negative girls.

I will be returning to Nesselhut in about 6 weeks to continue treatment. Next though is Frankfurt next week for TACE. It’s not my favourite treatment but if Professor Vogl tells me good news again then I more than happy to go through the pain.

Going back to the subject of money, it disgusts me that there are people like Martin Shkreli, the CEO of Turing Pharmaceuticals, are raising the price of a drug from $13.50 to $750! This is outrageous and there should be laws against it. This is why people are dying all over the world. It’s all about the money…… What a horrible world we live in.

I long for the day that we can have all treatments in the UK and it’s not classed as illegal or experimental. Let’s face it, all treatments are experimental as none of them are 100% guaranteed to work. They all have side effects and everyone is different. If only Dr Nesselhut could set up over here. But as long as he can’t then I will help anyone that wants to see him for treatments. Please email me or message me on my Face book page; www.facebook.com/TripleNegativeBreastCancer

I hope to God that Dr Nesselhuts clinic remains open. I get shivers down my spine when I think of what would be if the clinic closed. He has to fight to do such good work and research and help people like me. Despite doing everything ‘by the book’ and above the law there are still ‘people’ who are trying to find ways to stop the good work.

For now we soldier on and hope the results continue to improve and if this disease, especially triple negative breast cancer can be cured, if not cured, then classed as a ‘chronic disease’ that can be staved off with treatments or drugs such as diabetes.

Bear and I feel so passionate about this, more now than ever. We hope we can help as many of you as possible.

Light and Love. X

 

 

 

 

 

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