Scanxiety, treatments and a club I am not sure I want to belong to….

Treatments

I realise that in my blog last time I spent a good deal of time talking about all the ins and outs of chemotherapy, surgery, radiation and hair loss. I don’t really want to do that this time. I feel somehow above all that – been there. I may share a few details – but I will be sharing only happy and vibrant photographs. I want to focus more on my other journey – healing. Taking control and learning about survivorship. The chemotherapy will only manage the symptoms of the cancer but it won’t cure it. In fact chemotherapy can make the cancer stem cells more aggressive. They are clever cells. Five star generals, cleverly hidden from your own immune system so they can stealthily race around your blood and avoid detection. Outside of the more conventional approaches to managing cancer there are so many inspirational stories of survivorship. People taking their healing into their own hands and using a whole array of approaches which help the body manage the cancer itself. Not necessarily rid themselves of it but live with it, keep it under control. The benefits of turmeric, green tea – just to start are, and have been well known (and written about extensively) – but there are more. At some point I will share some of what we (myself and Ella) are doing to take control of my life and to do our damndest to make my body a place which is very inhospitable for cancer, and to make my immune system more able to manage it.

I will not reject more conventional medicine (at least not yet) but will use it to support the process. The regime of diet and supplements, yoga and acupuncture I am already on has had an amazing impact on my side effects. These last two week I have had way more energy than after the first 3 rounds of chemotherapy and my blood count before my 5th session went right up. My daily routine goes a bit like this:

Lemon water, sauerkraut (for enzymes), a fresh juice (all prepared by Ella) and then the following supplements – fish oil; turmeric; milk thistle; chlorella; aloe vera; spirulina and matcha green tea. We have found a supplement called Avemar which I take twice a day (8 tablets a day) – this has been amazing for side effects. Then in the evening I the same supplements plus co enymze Q10 and l-glutamine to help prevent neuropathy. I drink green tea through the day, 3 juices and my diet remains vegan and mainly organic. I do yoga at least twice a week (sometimes before the sun comes up when the night meets the day. This is when the birds start chirping). I also have acupuncture before the chemo.

My dry skin which had been itchy and inflamed for the first 3 weeks of treatment has settled and is clear and soft. I went on a walk on the Downs with Ella about 3 weeks ago and could barely walk up the hill again. I nearly fainted and had to lie down on the ground more than once on my way up – Ella stood over me like a running coach reminding me that getting better was never going to be easy and I had to put so muscle into it. Last week we did the same walk and I stopped only once on the way up. My brain feels alert. I am not without side effects but they are extremely manageable and I feel pretty good – and with my new hair definitely don’t look like I have some life threatening condition. Together this simply confirms that I have the power to influence my health.

New Treatments

I am also trying to get to grips with scientific developments. Trials, immunotherapy, gene mapping, personalised medicine. We are on the cusp of such major breakthroughs in treatment – I simply have to stay alive long enough to benefit from some of these. The United States seems streets ahead. It seems quite normal there (according to my ‘friends’ on the Inspire site – a site for women with advanced breast cancer) for women to have their tumor mapped for genetic mutations for example. There has been no question about testing my biopsy for mutations. I am not even sure you can do it within the UK unless as part of a research trial. In the US you can send your sample to Foundation One and they will examine it. They may identify a number of mutations. That information may simply be inactionable. ie that there is no treatment option indicated as a result of this knowledge. But it may be that that the mutations identify indicate eg DNA repair is the ….

Here are two responses to a question I posted asking about genetic mapping. The first response tests my intellect a bit – but I am working on it. Second one more straight forward.

‘

It might be helpful to stop thinking of cancer in terms of the genetic mutations that drive the cancer. It's nice to know whether the gene is present or absent, but it would be even nicer to know whether the gene is "actually" driving the tumor in your individual cancer cells. While some laboratories use genomic or proteomic testing to detect mutations in certain pathways, some other laboratories use functional testing to measure the end result of pathway activation or deactivation in the individual (not average populations). It can then predict whether the "individual" cancer patient will "actually" respond to a targeted agent, or not. When it comes to drug selection, the molecular investigator can only measure those analytes in paraffin wax that they know to measure. If they are not aware of and capable of measuring a biologically relevant event, they cannot seek to detect it. The premise of functional analytical platforms is that the observation of a biological signal identifies a candidate for therapy whether they understand or recognize the target.'

‘Basically, the way this testing works is that they look for common cancer mutations. The mutations in the Foundation test are not limited to those commonly found in breast cancer. The idea is that you could have a mutation that is common in another type of cancer, and there may be a drug available that is directed at that particular mutation (for example if you had an EGFR mutation, it might suggest that an EGFR inhibitor may be effective for you, even though the drug was developed with lung cancer in mind).’

There are other treatment routes - again including drugs licensed in the US but not here yet and an approach I am exploring – dendritic cell therapy (immunotherapy)which is only possible in Germany and Mexico but for which I have read some very powerful evidence and testimonials. I will talk more about these – but as you can see – staying alive is going to require military planning, research, tenacity, determination and probably a good bit of fund raising at some point – as the treatments of the future can only be had now if you are willing and able to pay.

Scanxiety

In two days I will have my 6th chemotherapy. Six out of 12, assuming that it is doing what it is supposed to do. I will know that about a week or so after this session as I will have a CT scan. I have had only a couple of meetings with my oncologist so far, and these have been a bit of a blur. It was all so new I more or less just listened, asked some very basic questions and followed instructions (doesn’t sound like me!). I was scared too, scared to ask questions for which I did not really want to know the answer. I have avoided too many probing questions. There are questions I have not asked but for which an answer exits (as opposed to crystal ball type questions for which the answer is almost certainly ‘… well it depends, everyone is different’, for example about the extent of the cancer on the liver. It was described by the cancer radiologist at my first scan as ‘salt and peppered’ through my liver and in my written first CT scan report as ‘extensive metastasis’ . I gleaned there must be tumours of sufficient size to take a biopsy (so a bit larger than salt and pepper) or I would not have had one. Other than that I have not asked directly anymore detail about the state of my liver. I know my liver bloods are OK – so it is not actually affecting the functioning of the liver at this point. It does feel swollen and hard which does not feel right. But with my scan coming up I am thinking that these questions will soon inevitably be answered as the meeting to discuss the scan results will specifically look at how responsive the cancer is to the current chemo. To determine that there will need to be a comparison between the first scan and the one I am soon to have. So one way or another I will soon have a better idea of the state of my liver, before treatment and around now.

There are a couple of websites I spend time on (mainly Inspire – which I mentioned above) and I search these for insights into the stories of other women and I join in saddo conversations about all things advanced breast cancer. There are often stories of great responses, and then set backs, but there are examples of women with liver mets who do have good responses to treatments and tumours can be pushed right back and there are even people who have periods of NED.

Oh the acronyms I am becoming au fait with! NED = No Evidence of Disease – and this is really the outcome you want after your scan. This is the A* of scan results. Other outcomes can be ‘reduction’ (A-/B+)….not sure that is the proper term but the tumours are getting smaller, ‘progression’….ie the tumours are still growing (C/D), ‘significant progression’….growing lots, (E/U) ‘ no progression’ (…no change) and ‘stable’ ie no or little change after a period of no progression or reduction (B-/C). I am trying to work out what would be top marks at this stage in the game given I like to be an A type student – but don’t want to get myself too hopeful as I am not even sure really what my baseline was – so could I even hope for NED by the end of my 12 weeks? For the moment I will be very disappointed with progression and reckon this would result in me stopping this treatment and starting something else. No progression would be a bit of a nothing result. Reduction is the one I am going for (not sure if ‘significant reduction’ possible after 6 sessions). I realise that I have a future of what a new facebook group of friends (very exclusive, private invitation only – you just need to have advanced breast cancer to join) call ‘Scanxiety’. And I am experiencing it for the first time. First but definitely not the last time.

Who are my New Friends?

Through the Inspire website, I posted a question and someone from the UK messaged me and asked if I would like to join a chat group of women in the south of the UK. A support group of women in the same position. I joined and within a day I had 76 messages of hello and support from this group of strangers. I felt rather overwhelmed. Lots of ‘Hello Louise!’ ‘Sorry you had to join us but we are here for you!’ type messages. I have since received a constant stream of posts from members of the group chatting to each other. I don’t really understand facebook at the best of time, but it has been non stop and all posts seem to land in my email inbox. I worked out today how to stop this happening. I am not sure I want to be part of that group anymore. The last post I read before going to bed last night was ‘Help. It’s in my brain! What am I going to do? Scared’. This morning it was a depressing one from a women saying what a terrible mother she was and how could she have done this to her children. I couldn’t help myself and spent some good time scanning the posts – all quite depressing stuff ‘Buying a wheelchair – any ideas?’; ‘liver resection – worse than childbirth’ ‘Running out of options’. Not surprisingly I felt low yesterday – it’s like being invited to an exclusive group you really don’t want to be part of, yet these women are all managing a whole range of physical and emotional and social issues just like you – but somehow I need to feel apart from this. Slightly exclusive. I am going to be different. I am sure they all think the same.

Scan tomorrow. Will I be an A*student or will it be more of a B-/C….?

Writing two days later....Had my sixth chemo today (19th March). Imagined my scan would be about a week afterwards but no – it is tomorrow morning at 9am. Gulp. My white cell count and neutrophils were good today – better than last week and best so far on chemo – which is testament to my diet, supplement and moxa regime. This means I will avoid white cell boosting injections if we can keep it up. We have the power…