Today was reasonably eventful. Further to my thoughts of going to Germany to have TACE with Professor Vogl I had the opportunity to speak with another person who has been treated by him. Patricia peat from cancer Options gave my number to one of her patients. A lovely lady called me and we discussed all about her and her treatment. She has received 8 TACE sessions which is highly unusual as three to four sessions is usually the maximum. However, Nina needed that many because the cancer was quite advanced and already within her breast, chest, spine, liver and lungs. Phew and I think I have it bad. It makes me realise how bloody lucky I have been so far.
Like me Nina didn’t want systemic chemotherapy and opted for Professor Vogl. She said he is great and put my mind at rest and I thought, ‘Right I am definitely going to go and have his treatment. ‘
That was until we met with Professor Dalgliesh this afternoon. Prof D has been on our team since I was first told the canSer was incurable. He was the one that referred us to Doctor Nesselhut and introduced us to immunotherapy and the world of vaccinations.
We decided that it was about time we had a meeting to discuss what could be done and also to sound off about our recent experiences at Doc N’s clinic in the last six months.
We expressed our passion for immunotherapy and that even though in the last six months the tumours have continued to grow despite the vaccinations we do believe that it is keeping me well. My blood tests whilst on chemotherapy never show to be that of someone on chemotherapy! That must have something to do with that treatment.
I explained that TACE with Prof Vogl and Doc Nesselhut and further DC therapy was booked for the beginning of April but were wondering if there was anything in the UK we could be part of instead of having travel to the Fatherland. Prof Dalgliesh is of course the head of the Cancer Vaccine Institute and if anyone knows about vaccinations and trials in the UK it is him. He explained that there were no trials for this kind of canSer but, and this is a BIG but (I like big BUTs and I cannot lie... Ha) he did start thinking out loud. We discussed that radiofrequency ablation could be an option and quite effective in my lungs and despite the fact that blasting tumours would mean sending fragments to settle and grow elsewhere combining it with immunotherapy could actually mop the fragments up!
He said that he would ask the board and tell them my situation and show them my scan and hopefully I could start that in the next few weeks.
I asked how it would work. He said that I would need to go every two weeks to begin with then monthly then two monthly and so on. During which time I would have RFA (radiofrequency ablation)
Well Pete and I were all wide eyed and happy at the thought of having treatment in the UK. Whether we pay for it or not it would be load off. The pressure of travelling and being out of work and away from home is a lot to handle but of course essential if it means I can stay well.
Prof Dalgliesh said that I was looking great... Yes I have heard that a lot... Ha ha.. Let's keep it that way!
I did explain to him that I had been having GcMAF and he knew all about it. He didn’t have much to say on the matter. He did however say that Professor Vogl is well esteemed and highly rated as an academic, not like Doctor Nesselhut who is lovely and is ground breaking but is not as academic as Vogl.
The thought of treatment in the UK left me reeling. What if the board turn me and I have cancelled my trip to Germany? I am obviously very aware that apart from GcMAF I am not having any treatment and technically the treatment I have been having in the past few months have not been working. I am worried that the canSer is growing and that it may spread. I am touching wood as we speak and being ever grateful that thus far it has not got further than my lungs and chest lymph nodes.
I am however secretly excited that I am looking to have another month of non invasive treatment (well except RFA but I can handle that!) Prof D said that if we go ahead with his idea that Prof Vogl would be a great back up. This is it then. The Plan.
Pete seemed really happy and I feel pretty good about it. I have everything crossed that they accept me and I can get started ASAP.
Whilst there we discussed other treatments and the Prof suggested that I ask Professor Harris, my usual oncologist if he can arrange for me to have Zometa infusions and interleukin2 on a regular basis as this would really help.
He also mentioned low dose naltrexone. I am already taking that. And actually received a prescription for the next three months from the UK distributor I mentioned the other day.
So all in all a great result. I now hope that I am not left hang8ing for weeks as, bless the Prof, communicating with him can take time. Something I do have but time is of the essence for me. If I want to stay well and not have any spread then I have to crack on.
I want to add that Nina Joy, who I spoke with this morning, has blown me away. I have been reading her blog and her picture shows a beautifully strong women. Wow, what a gal. She has written a book which has just been published. I am going to buy it. If you are interested in her story then please check out;
The Adventures of a Cancer Maverick by Nina Joy
Her blog is www.ninajoy.com
So once again a lot to think about but it just goes to show that the options are still there. There is still hope too even when the disease has progressed because after speaking with Nina I now realise you can still feel great and symptom free despite having many tumours. It’s living with canSer not dying from it that counts. I intend on doing just that for many years by which time there will be a cure or at least a treatment that will mean I can live until I am old grey with my man by my side.
What a lovely thought.....Night all. X