In my last blog I was just about to pick up the phone to Dr Nicola Hembry. She is a lovely lady and makes me feel very calm. We discussed the results of the RGCC test in detail. The first thing she noticed was the circulating canSer cell levels. Mine were (14.2/7.5ml, SD+/-0.3 cells). Apparently the level should be below 5 and mine is 14.2 indicating the canSer is active and progressive. My aim is to get it below 5. This alarmed me somewhat and I felt my heart sink.
The tests showed the sensitivity to different chemotherapies. Anything above 80% was worth using and classed as more effective. Unsurprisingly Vinorelbine, that I have been on for the last three months only came in at 65%. Capecitabine, the drug I was on for almost a year and was actually quite successful shows to be 75% effective.
The drugs that showed up as most effective are; Gemcetibine 82%, Cisplatin 80%, Carboplatin 82%, Ixabepilone 83% and Eribulin 82%. This information pleased me as I haven’t yet tried these drugs and Eribulin, one I had never heard of until I was recommended by the oncologist at my last scan results appointment. This gives me some hope that there are other effective treatments available to me. Avastin showed only a very small benefit. Two others that I am not sure are available for breast canSer are Erlotinib and Everolimus.
Ixabepilone brand name is called Ixempra and researching seems is the last line of chemotherapies offered for advanced breast canSer.
The results also showed genes that were up regulated and down regulated. The EGF (epidermal growth factor) gene is shown to be 45% over control. This is common in triple negative breast cancer.
Interestingly the genetic profile genes related to heat shock proteins all showed that they were between 30 and 45% below control. This is a good thing as this means this shows it responds well to heat treatments such as radiofrequency ablation, radiotherapy and hyperthermia treatments.
There were other genes such as the metastases regulators that are out of control which increases the risk of the canSer moving around.
Moving onto the complementary test results.
Most surprisingly enough to Dr Hembry was the lack of sensitivity to Ascorbic acid (Vitamin C) She said in nearly ten years there has been only one other person who cannot have vitamin C in order to help reduce the tumours. Why am I not surprised?
However the results showed that the following things do have greater sensitivity;
Lycopene (present in tomatoes)
Ukrain (whatever this is?)
Bio D Mulsion NuMEdica Micellized D3(vitamind3),
PME (Polymannan Extract)
Quercetin ( found in onions and apples)
And less sensitive in;
Fermented Soy extract
Indol 3 carbinol
and many others that I have no idea what they are!
Well this is a turn up for the books. I am surprised at Curcumin. In fact that didn't come back as a complete loss like the others but isn’t sufficiently effective against canSer. This doesn’t mean I will stop taking it. It is still an anti inflammatory and really good for the system.
Mistletoe also was only tested on specific form and I was advised there are many others that could be beneficial still.
As well as this I had a test called Immunostat that shows immunity activation/suppression.
Strangely enough it showed that there is a deactivation of immunity. Of course this is not great considering I have had immunotherapy. Unfortunately Dr Hembry couldn’t really give me advice on this as she didn’t really understand it as she hadn’t done this test before so I have sent it to Doc Nesselhut to give me a heads up. I hope it doesn’t mean that the immunotherapy hasn’t been working. I await his reply.
Also today I received a test that I did when I was with Doc Nesselhut last, to establish if I had any viruses. This is on the thoughts that maybe there is an underlying virus and that could be stopping my body from repairing itself. Our Australian friend had said that he thought people with TNBC carried the Epstein Barr Virus.
Doc Nesselhut thought breast canSers were caused initially by bacterial infections through the nipple. Well... the results showed that I do have the Epstein Barr Virus! On researching it is something that can be underlying in many people for years with no symptoms. Nothing to be worried about massively but Doc Nesselhut has said he can treat me for it with an infusion. I would like to know more information on it in due course.
Epstein-Barr virus is in the herpes family of viruses and most people will become infected with EBV sometimes during their lives.
What causes Epstein Barr Virus?
Infectious mononucleosis, or "mono," is a contagious viral illness that initially attacks the lymph nodes in the neck and throat. When these tissues become less effective in fighting infection, sore throats, swelling of the nodes and fever may result.
Mono is caused by the Epstein-Barr virus, which is named after the scientists who first identified it in the mid-1960s. The virus enters the lymph nodes and attacks the lymphocytes (the white blood cells manufactured there). As the white blood cells come into contact with the virus, they change shape and multiply. At first, there are no symptoms because it takes several weeks before enough of the altered cells can accumulate to generate infection.
If the virus lasts more than six months, it is frequently called chronic EBV infection. Some doctors think EBV is the cause of a chronic condition called Chronic Fatigue Syndrome (CFS), although this has not been definitively proven.
Mononucleosis spreads by contact with moisture from the mouth and throat of a person who is infected with the virus. Kissing, sharing drinking glasses, eating utensils, and toothbrushes, or touching anything that has been near the mouth of an infected person, may result in transmission of the disease.
All in all a real eye opener and I can’t decide if it actually made me feel worse or better?
Bearing in mind this test was done the week after chemo and before my last immunotherapy visit and GcMAF visit.
With regards to GcMAF I have now had a report, as such, and have been advised how to take it at home. I require a nebuliser and syringes to treat myself. So I have ordered them from the internet and will start treating myself as soon as they arrive.
It is difficult to tell if GcMAF is working and will have to wait until I have a CT scan. Even though I had the treatment last week and have more to have at home I still feel worried, especially now I have the blood test results. I am hugely aware that the canSer has been growing especially since I haven’t really had any effective chemotherapy in the last three months. I feel like I am against time and sometimes that I don’t have many options.
I have to admit yesterday was a bad day. I felt very down and worried about all this. I have no idea what is working and speaking to Dr Hembry, she will send me a list of treatments and supplements that I could do with the complementary options but this isn’t going to stop the canSer. It will probably just support my system. She said, ‘If I was advising a family member I would suggest getting some form of treatment perhaps using the chemotherapies that looked promising on the results. We then discussed visiting Professor Vogl in Frankfurt.... So that is where I am now... emailing Professor Vogl and getting something started before the end of April when I have booked to start chemo on the NHS. Of course I am reluctant to do this but will if it means it stops this from progressing. I am feeling better today and more positive about it all.
More on the treatment offered with Professor Vogl next time....