My last post was a bit of a cliff hanger. I haven't written since. I was awaiting the results of scan and my appointment with my consultant had been bought forward. Did this mean something or not?
I am still not sure, but subsequent events would suggest that it was bought forward because the scan results required discussion. Since the date of the scan results I have had a bit of a roller coaster of a time, and as happens with scans and tests, life can about turn on the basis of what they say. I had been feeling really well since my last Germany treatment and had considered not having a scan at all knowing how psychologically hard the process is. But I did have the scan and the result on the scan report was ‘disease progression’. I did not look at the actual scan, I think i would find it hard keeping the image out of my head. Perhaps it would help with my visualisation (which is pretty poor)? There was one line on the scan report apart from the conclusion. This read ‘increase in number and size of lesions’. That sounds pretty scary, and scared I was. I turned from a confident warrior to a defeated victim in just a few seconds. I listened, staring at my oncologist as he told me that since they had seen progression they should act on it and he would propose that I start a new round of chemotherapy, Xeloda, which is ‘quite tolerable’ and is taken in pill form so has far less impact on your life. He assured me it was so common that they even kept stocks with them in the hospital and I could start the next day. But I want to explore immunotherapy, before chemotherapy - I said. It does not make sense to me to start a therapy with so many toxic effects and which starts me on the ladder of treatments oncology has mastered for advanced breast cancer, which ends in one place only as far as I can tell. Why could I not try a therapy which focuses on the body’s own defence system, rather than one set to destroy it. Well - simple - they are not available to people like me at this time. Not even as a trial. My oncologist did look for an immunotherapy trial I might be eligible for but they are only open to people with triple negative breast cancer.
I left the clinic, simply unbelieving - after all I have done. It did not make sense. My liver bloods were fine. I had not had inflammation or tumour marker bloods taken so we had no picture from that. For a day I rather crumpled and retreated to my bedroom, which is where I like to go when things feel too much. I missed my office party, lying under my duvet. I asked for a second opinion and booked to see Prof. D. in London. I also sent my scan to Dr Martin in Gottingen and emailed him directly after my meeting with my oncologist. Later the following day Dr Martin got back and said he was not sure it was definitely progression as it could be a immunological reaction as part of the immunotherapy and he needed to see by bloods. The moment I read Dr Martin’s email my mood totally reversed - I was a fighter again. That made sense to me. Two weeks before the scan I had had dendritic cell therapy and my vaccine had had 11.5 million dendritic cells - more than any previous of my vaccines. I did some more research on immunotherapy and it is clear that while with chemotherapy success can be judged by a change in tumour size (as the intention is to kill rapidly dividing cells), with immunotherapy the response is less clear cut. This is a quote from one paper I found about immunotherapy: ‘…the appearance of new lesions or growth of existing lesions, as immune cell infiltration following immunotherapy may be mistaken for tumour progression. In addition, the unconventional nature of some responses…..have made it necessary to introduce new criteria to characterise anti-tumour activity’. Basically, there is a chance that what looks like progression could be part of the immunological response. I just wanted to enjoy Xmas and have no doctors or hospital appointments so I was happy with the possibility that this was not progression. I then met with Prof D who confirmedthat withthat PET scans light up with cancer activity but also inflammation and abcessess and that immunotherapies can result in what looks like progression. He then went to another room to look at my scans and came back and said yes he could see 3 bright areas. But then he stared at my blood results and the trend from my first treatment in Germany and he was confused. I liked that - something I am doing is not delivering standard responses. He did though agree that Xeloda was something I should consider in January - which made me think that he thinks it is progression. It was not until I spoke again to Dr Martin, once he had seen my scan and heard results of additional blood tests I had after meeting Prof D, that I decided definitely what to do. These showed good white / red bloods, good liver, low inflammation markers but a rise in one of my cancer markers (the only one they measured - CA 15-3). Dr Martin told me to enjoy Xmas and do the bloods again in January as what matters is trends - both these readings are a cross section of time and to work out what is going on it is better to have established trends - certainly in this case it is. It matters to me enormously as I have invested so heavily in an immunotherapy - if this is part of the response to that then I certainly do not want to knock things off course with a chemotherapy. If it turns out to be progression - as I cannot get immunotherapies here - I will move to another combination immunotherapy, dendritic cell in combination with another with Dr Martin.
There is another piece to this puzzle which I am taking into account and which has complicated my plans - that is my teeth. In so many of the integrative health literature for cancer I have read about the connection between teeth and in particular, breast cancer. Many practitioners believe that if you have infections in your teeth or toxic mercury, these drain your immune system and threaten cell health etc. Infections from teeth drain into the lymph system that feeds breast area (my basic biology!). Ages ago I booked an appointment with a skilled biological dentist who has written about toxic teeth - and my appointment fell between the scans and blood tests and doctor meetings. I thought my teeth were pretty healthy but it turns out my mouth has mercury levels of 98 (a factory is closed if levels reach 20) and I have a chronic infection under my root canal and two wisdom teeth, plus infection in my jaw. I was rather stunned - I could see the results of the tests and the X-rays - I really do have a toxic mouth. If you believe in the body’s ability to heal then having a toxic mouth will waste or strain my immune strengthening efforts. There are testimonials of people who claim their health only turned around once they had sorted their teeth. Now that I know what is going on in my mouth, and hence my body, I cannot ignore this information. The treatment plan would be relatively drastic with 3 teeth being removed. I was not certainwhat to do although my gut said I should get on and do it. Then, that very evening, at my brothers xmas party I met a friend of his who has a brain tumour and has had some cutting edge immunotherapy (as part of a trial) and who is doing an amazing array of things also to fight his cancer. He said that before he had the immunotherapy his oncologist told him he had to sort out any abscesses in his mouth. I also told Dr Martin about the outcome of my dentist appointment and he also agreed that much stems from the teeth and I should sort out any infectionsetc. So among all of the decision making I am still in the midst of making, Ineed to factor in having some serious dentistry. I need to do this away from my next immunotherapy so I have a chance to heal. I am thinking of the second week of January if I an secure that date. I feel I have to cover every base which has a strong enough case and to me this makes lots of sense.
I still do not know if it is progression or an immunological reaction. I feel well and with Ella back I have so much help with my diet, juices, relaxation etc and fighting plan. I need to remind myself that I am the only person who can take responsibility for my health. I must trust my gut and I must always believe. I feel well.
A lovely friend who lost her husband a couple of years ago, sent me a book which had comforted her. Victor Frankl Man’s Search for Meaning. He spent a long time in concentration camps in the war and his short book, which he wrote soon after liberation and which has been reprinted so many times, uses reflections of his time there to consider life and how to manage the most difficult of circumstances. It is very powerful and I wanted to copy out some of the paragraphs that have really inspired me. Essentially he reminds us that we have the freedom to choose our attitude. He quotes Nietzche ‘He who has a why to live for can bear with almost any how’. It was also, shock - horror, I learned it was Nietzche who first said ‘What doesn't kill you makes you stronger’. All in all it has been a brilliant book to read to help me steal myself for what lies ahead. Such a strong message comes from this brilliant narrative and that is - hope is everything and the moment you lose your mind your body will quickly follow.
What alone remains is the last of human freedoms - the ability to choose one’s attitude in a given set of circumstances.
Those who know how close the connection is between the state of mind of a man - his courage and hope, or lack of them - and the state of immunity of his body will understand that the sudden loss of hope and courage can have a deadly effect. Victor Frankl Man’s Search for Meaning.
I continue with IV Vit C twice a week to help my immune system and my normal regime of juicing and supplements. I need to work on meditation(Ella gave me a great book for xmas to help me with this). Blood tests in first week of Jan. Teeth perhaps soon after that. Germany - depends on bloods. Keeping the faith....
Had a lovely family Xmas. We had a gathering for Xmas just after my birthday and the kids had bought me a nice black sparkly dress - so out came the wig for a brief outing. If the hair doesn't work change it.