Ground breaking vaccine using immunotherapy… Is this the answer to our prayers?

Since last Wednesday I have felt much better. In fact Thursday I felt completely different. I had a new outlook on everything and had a really productive and fulfilling day. Weird how sometimes you just need to get it out, get over the wallowing and feel cathartic, refreshed, renewed. I am sorry if I upset anyone but it was really good therapy for me.

So the week has been quite eventful for me, visiting my dad and brother whom I haven’t seen for years. No reason really why u haven’t seen them sooner but I figured I needed to make the effort and it was well worth it.

Then I went on to see my mum and spent the evening there snuggled under a blanket together watching TV with her cat on her lap. For dinner we ate my favourite meal from when I was a child; Cornish pasty, jacket potato and baked beans! Yum!

Today I have been to my personal training session. She has already increased the walks that she has prescribed me and has got me using muscles I didn’t even know I had! I feel great maybe a little tired and shaky, with arms that represent a Tyrannosaurus rex (very small and inadequate!)

But that’s not all that has been going on this week. There has been ground breaking news of the immunotherapy trial that has had 94% success rate with complete remissions. I want to shout out ‘wow, how exciting’, but I have to admit as much as this is brilliant news especially for those with blood canSers at this stage Peter and I are not surprised. We have always supported that immunotherapy is the answer to stopping canSer in its tracks using T-cells otherwise known as dendritic cells.

What was really exciting about the news released this week is that the vaccine that the patients were given will now actually detect and stop that canSer from returning. So in the true sense of the word, it really is a vaccine against blood canSer! Genetically modified cells to search and stop. This really is awesome! Now they need to develop a vaccine like that for every canSer, solid tumour canSers, triple negative breast cancer.

I am certain that when I see Dr Nesselhut next he will not be surprised by this news as he has been providing vaccines for many years. Not identical to the one reported this week but still. I currently have vaccinations using my cells that have been primed and worked on in a lab as well as using other solutions such as nivolumab.

If you haven’t had the opportunity of seeing this research/news here are some links to our newspaper reports;

https://www.theguardian.com/science/2016/feb/15/cancer-extraordinary-results-t-cell-therapy-research-clinical-trials

 

Obviously there is a long way to go before there are treatments like this used for the likes of you and I. Years still. The trial did have some devastating side effects on a few, mainly two, who died from a severe immune reaction. So it’s not all cut and dried but very hopeful.

This is today’s news mentioning nivolumab and ipilimumab. Nivolumab is being is expected to be licensed for use this summer in Europe.

http://www.telegraph.co.uk/news/health/news/11641771/Cure-for-terminal-cancer-found-in-game-changing-drugs.html

Peter always said, right from the day I was diagnosed with incurable (apparently) canSer in 2012 that in five years there will be cure or a treatment that can keep me alive until I am old and grey. We are almost four years in and he is absolutely right. It feels like that there is a race on to find a cure, a vaccine, for this deadly disease.

With this positive thought in mind I am going to continue living, being, and loving. It’s a bright, cold afternoon here and I have much to live for. Plus it’s almost the weekend again when I get to spend it with my One, my Bear.

Love and Light All……

XXX

 

 

 

 

 

I’m having a weird Wednesday

I’m having a weird Wednesday. In fact I am having a weird week so far. After the good news last week I had big plans for this week as it was predominantly free. I planned on doing lots of work updating my website and writing the survey, and exercising more and chatting with my builder friend (hoping to plan doing our kitchen) and doing all sorts but no pressure. Then I went and broke our car. A moment of distraction and I drove into a kerb damaging the alloy and tyre. Argh the cost and the inconvenience!

That one act has left me feeling gutted to be honest. I keep making mistakes. I keep making my life difficult. I keep putting obstructions in the way. Then Sunday night I awoke feeling sick. That has now meant almost three days of a stomach bug. And not just me. But Pete as well. We spent most of the day in bed on Monday. The problem is with this is that it means that we couldn’t consume anything. Again weight loss and trying to remind myself of what foods I like.

What is going on with us? I wrote on our kitchen black board that 2016 is going to be better. So far it is but isn’t. We seriously have had the most eventful start to the year. What is all about?

So today I had to make changes again because I woke up in the middle of the night bloody coughing… That bloody cough! Then my mind started whirring and I laid worrying about things; stupid things really. Things not worth worrying about. My head is a mess.

So things haven’t been a complete waste. I did meet a lovely lady who is going to help train me. Keep me on my toes and give me guidance. Sounds exciting? It is. My own personal trainer. She’s going to hold my hand and with the information I have provided help me become fitter and brighter.

She must have boosted me because the next person that saw me was my window cleaner, who said I looked much better than the last time I saw him. I must have looked awful!

You know, I have just had a little call from my bear. Who despite feeling under the weather has been going to work. He knew somehow that my head hasn’t been right today. It hasn’t been helped by a migraine.

I decided that I need to meditate and do some stretches. That helped me clear my head somewhat and I decided to write how I feel.

I am lost. I think. I am working hard at staying well but I think I have lost who I am. I like helping everyone and I love everyone’s support on Facebook and those that follow my blog but I do feel trapped by canSer. I know it’s not going to disappear that easy and that despite my good results I have to be well aware that the battle isn’t over. But I do feel like something is missing.

Go back to work then? Well I don’t want to let people down by cancelling. And at the moment that would’ve happened a lot. I have defo lost my drive to work. I am that lucky not to have to right now.

I don’t want to clean the house. I don’t want to sort my overfilled cupboards out. I have no idea why the house smells so bad of cat! And the weather is keeping us internalised. Bloody rain and wind and for goodness sake, do away with all these storms. Goodbye Storm Imogen. Who’s next Storm Jethro?

Weird things are happening. The storm has taken our metal watering can, all except the rose on the end! It’s nowhere to be seen. And my friend told me that his neighbour has lost three fence panels. They are nowhere to be found. I mean what a weird week so far.

It’s good to think. It’s good to write things down. And I have mulled on things all day. My stomach aches probably a mixture of bug and anxiety. We put ourselves through so much stress for nothing. Doing is better than not doing sometimes.

Do I feel better for having put this on paper so to speak? I thought I would. But I am no further forward with what I should do.

I need bloody therapy! But what kind I don’t know. I need solid sleep. I need calmness. laughter, happiness and the freedom of my mind. I guess that’s what we all need. This world is so complicated now. I like simplicity. I am a simple person. In more ways than one!

Not long till Bear is home to take me for another walk and through exercise and love I will get better…… That’s where I am going to leave it. Simply.

A Bear’s Blog for Friday….

I was sitting in the University Klinikum hospital in Frankfurt 4 weeks ago waiting for Claire to recover (a little bit) from her lung surgery and the German medical pamphlets caught my eye. 

Whereas I am used to the leaflets explaining the mechanic’s of treatment and the processes of chemotherapy, surgery and “palliative’ care (I hate that phrase). These seemed different. They weren’t generically talking about what would be “done” to the patient in accordance with a generally accepted roadmap, but were actually about “The Patient”.

 It was entitled “TUN SIE ETWAS FUR SICH” – Do something for yourself.

 Claire and I have learnt very early on that canSer is not just a disease of the body but also of the soul.We have met and spoken to the most incredible women over the last 4 year (yes that’s you I’m talking about – all of you) but 1 thing really resonates with us both. You guys don’t think enough about yourselves.

 We have spoken to ladies, who have not told any of their loved ones that they are even sick, for fear of upsetting them, who feel that their anger when first diagnosed is unfair to their family. This has led them to isolation and ultimately to depression.

 So let me just give a friends and family perspective.

 We love you, we love you so much and the one thing that we probably can’t cope with is seeing you alone. We actually can help and in so doing you will help us. Together is the only way to come to terms with this disease and ultimately with death. We are after all not immortal, no matter how hard we are pushed to believe that we are by everyone around us. I think Claire would kill if anyone says, “You will be OK” to her again! 

 Of course pain and passing will leave all your loved ones upset and leaving behind everything that we work so hard through life for is painful in itself, but together this can be diminished and hopefully a good end can be achieved, or even better, an inspiring middle.

 Do something for yourself and you will be doing the best you possibly can for everyone who so dearly loves and respects you.

 In the 10 point plan we have dedicated a lot to how a structured coping mechanism for the soul can help both mentally and above all physically (nothing destroys the immune system like stress) but its definitely not all encompassing and I always says to Claire, every time she says “I would really like to …..”, go on do it Kitty.

 Exercise is a huge stress buster and gets the immunity fired up. You can only do what you can do, but if you saw Claire wincing, with her broken ribs bandaged and wearing a support for her spine, whilst coughing up bits of tumor, you would have to say to yourself, there is no excuse not to exercise.

 Meditation and Yoga balance the thinking and relax the body and you tube is all you need to be guided by the worlds experts. Deepak Chopra and Oprah Winfrey have even generously combined to offer free guided meditations via an app several times a year; just google it.

 Claire practiced visualization for several months and really felt that this helped control her body systems. One of the more bizarre parts of this was that she refused to subscribe to “battling canSer” and felt that the tumors were also just trying to make their way in the Universe, but that she would like them to go away now. Surely that’s taking ‘love your enemy’ to the extreme.

 Now to be a bit radical – diet. We have been so strict with supplements and foods but Claire has said that the value of having “a bit of what she fancies” spiritually far out ways the penance of adherence to the diet. Our conclusion is that 80/20 is just fine and good or the soul.

 I have always been a big believer in sayings and phrases (there is no saying “it always rains on a Wednesday), because they are true. There is a saying that “laughter is the best medicine” and above all the science we have uncovered, this is true.

 Immunology combined with Chemotherapy will be the silver bullet for canSer and especially hard to treat variants such Triple Negative Breast Cancer. We know from research conducted at Reading University that nothing diminishes the immune system like stress. Have you ever fallen ill on the first day of your holidays? That’s how badly the stress of tidying up work, packing and travelling effects you, imagine how hard canSer can knock you for 6!

 So laugh, live, love and share and you will have the best possible chance and if not, then you have had the best possible ending, which in the end, is all we all hope for.

 “TUN SIE ETWAS FUR SICH” and do it today, because we love you.

 

 

 

 

Goodbye January, Hello February!

It’s February already.. Blow me down with a feather. January was one testing month and after my last blog we have been keeping busy as always. Madly we have been away again to Austria, skiing. I know, we are mad based on my physical health from my last blog, but the holiday had been booked for some months.

The day before we left I was in an awful state. The coughing had made my ribs become really inflamed again to the point of not being able to move without being in complete agony. I have been foxed by this debilitating inflammation over the years of having canSer. Once again it was destined to cause me problems. I really thought, how am I going to walk or sleep as lying down hurt just as much as sitting or walking? I didn’t want to upset Pete but I was very afraid. He was carrying all our luggage and being brilliant. It’s mainly due to him being calm and supportive that overnight the pains really suppressed and I could at least sit without feeling in complete agony on the flight.

I was of course doubtful that I would be able to ski. But with the best will in the world Pete had me out on the pistes the very first day. It was a bit of a disaster though. The weather was awful. I was petrified of hurting myself and we actually couldn’t see the piste! Not ideal at all. We decided that day wasn’t the day to be brave and came home early. It did knock our confidence but the next day and the one after that was beautiful and the conditions improved over the week, as did my condition. I was skiing very rigidly and the air was very thin but I just felt so grateful to be able to get out and be sort of healthy and really enjoy being alone with my Bear yet again.

The apartment we stayed in was lovely, however, and this is a big however, it was up quite a steep hill which in the morning we had to climb stairs to get to the pistes and in the evening had to battle the incline to get home. I actually liked the challenge and was grateful for the extra exercise. That’s what I said after having completed the climb. But before the climb I didn’t have the same sentiment!

We skied about 25km a day and tried to really take it easy and take it all in. Because we were self-catering we were really careful with food and It was the best time to really nourish ourselves. I felt in control and then I got my mojo back.

Pete could tell I was afraid still so bought me a back/rib support. It was amazing. It really helped me get over my fear of skiing and I could relax and follow Pete closely on the pistes like I usually do. Perhaps a little too close on occasions!

I felt so grateful that Pete convinced me to ski. I feel so grateful to the weather turning out amazing and the conditions being fantastic. And now I am home I feel motivated to get healthy and fit again despite the nagging cough and sore ribs.

 

Whilst away I received voicemails and emails from Prof Harris secretary asking me to contact her. Gulp… oh God. I called and there was nothing to worry about. She gave me my brain scan results that I had the week before we went away. All good in the hood! No new lesions and the tiny one that was treated with gamma knife still remains. But as Prof says it could be a blood vessel or scar tissue. Yay! That cheered me up. I was told by the secretary my CT scan results would be given the following week at an appointment with the Prof. Ok…. Good.

So yesterday Pete and I met at the hospital nice and early and the Prof breezed in the room and said everything was looking good. In detail, no new lesions. None in the liver or peritoneum. Spinal lesions still predominantly sclerotic. The Right lung that has been treated with ablation has got a big hole in it. Basically things are changing in there and it will take time to see what occurs. Any other lesions that were remaining are stable and unchanged. Lymph nodes are all subcentrimetre therefore classed as normal. So yay! Although I always walk away feeling a little bemused. It would be lovely to be told that everywhere is clear. It’s never that simple though.

Whilst there I explained the pain I am suffering so Prof examined me and feels that the broken rib I had has calcified and formed a small lump. Under ribs are nerves that sit in a groove or channel. He thinks that the lump is causing the nerve to be unable to sit flat and is getting aggravated causing pain. He has suggested that I see someone to get an injection to stop that nerve pathway. He is writing to the relevant people for me.

Pete is lovely. He says ignore the report stating there are stable lesions. It basically means I have no evidence of disease as they never specify where they are or the size of them. I asked Prof Vogl about the other lesions and he says there aren’t any?! I am at a loss. But the main thing to think is they haven’t changed, they cause no problem so ignore them.

Right now I need the right lung to recover and get rid of the biggest tumour, which I am confident was done during the ablation. I am trying not to cough caused by the ablation. I now know it isn’t a lymph node causing that issue but the damage/healing of the ablation in the lung that is.  It drives me mad…..

I emailed Prof Vogl with the reports and he was really pleased. I think. His emails are so short and sweet and a little hard to understand. But I think the gist was him being pleased.

 

So now we are back we are not going for treatment this month, which is nice to be at home and have us to focus on. I feel motivated to exercise and began my rituals on Monday. Tuesday I couldn’t walk from such stiff legs! Haha! You wouldn’t think I would feel that way after a week of skiing and climbing hills! Yet I cannot walk… Stretches are killing me! Imagine someone walking like they have been riding a horse! Yep, that’s me.

 

So that’s us all up to date. My mind is a whirlwind and the thoughts and emotions change so regularly. I wish I could bottle my motivation and stay in this frame of mind. CanSer confuses me so much and it’s hard for me and Pete and everyone else to have a normal life. What is normal? That’s something I haven’t got the energy to think about right now… I need lunch!

I just want to say a huge thank you once again to all my followers on facebook who have been so supportive through my mad January triple negative breast cancer traumas… I love you all!

XXX