triplenegativecancer_home

A tense journey but we can finally relax....

by Claire27. August 2014 08:53

It's been a busy few days for Bear and I. Friday we took our friends at 5am and drove to the Eurotunnel. We had a little euro tour planned again but not for treatment this time. For the next 3 weeks I am on vacation. I know 3 weeks right?! How lucky am I?

As I couldn't fly due to having had ablation less than two months ago we decided to drive to the south of France stopping en route. France is so beautiful and the changes of scenery are breathtaking.

Sadly our journey down here was more than we bargained for.

I stupidly forgot our passports and left them in the first hotel we stayed in. We stopped in a place called Beaune. It was so traditional and beautiful. We got up nice and early to get to our final destination in plenty of time to be able to settle in then I got a call to say I had left them behind! Doh! That added on a couple of hours to our five hour journey. Oops.... Then the whole of France must have decided to descend onto the motorway we were on. The long and short of it was that throughout the journey the estimated rival time extended to 11 hours and to top it off a large holiday caravan type vehicle decided to drive at us. Yes at us, taking our whole wing mirror off! It made such a loud noise we all thought something must have gone through our windscreen or taken the side of the car off!

Driving on the opposite side of the road is hard enough in a foreign country but driving without the wing mirror you so depend on is well, driving with a death wish! But we had no other choice. We have found a garage and in our broken French spoke to the mechanic who has sourced the mirror but we have to wait five days before it can be fitted. And the cost, well, it's sickening!

We have tried to not get too upset by this and have ploughed on at having fun. 

The weather is changeable but lovely and I have been doing what I love the most-sunbathing.

It has been quite a topsy turvy time for my bear and I. Having people with us means we don't cuddle quite as much and the heat at night has meant we sleep at a distance. We miss each other and tempers have been flaring. I have been told that I am more agressive than normal and even though I don't think I have I can only put it down to feeling under par.

I have continued to struggle with drinking green juice and taking my meds and supplements without the want to vomit. I have had stomach aches and upset tummies. Today though I feel much better. Maybe it's because I am calmer and happier or maybe I have just got over myself and letting my mind dominate.

Where we are staying is very relaxing and yesterday I got to meditate and do a spot of yoga, I hope to get into a routine whilst here. Pete has to return to work so I will be here with my mum and some friends. I have already been losing sleep about driving here! But I am sure I will get myself sorted out eventually. 

Yesterday we spent some time lazing by the pool and I got to read some really interesting documents that kind followers have been sending me.

I am hearing and reading a lot about mebendazole still.  I think I will need to book to go to the clinic in London that uses it. 

Mebendazole disrupts the glycolic pathway while at the same time it can cause the cell membranes of mitochondria to rupture and cytochrome C, which leads to apoptosis.

I read though that not only that but other things like NSAIDS such as Ibuprofen (not sure it is the type you can buy in the chemist) are very helpful for treating cancer.

NSAID's formulated in lipids which would be preferentially taken up by cancer cells, due to elevated levels of LDL receptors on cancer cells. Such a form of ibuprofen exists. The dose would be 400mg three times a day.

Ibuprofen binds COX1 and 2 and PPAR Gamma receptors in cells. Activation of these receptors in cancers cells particularly invokes apoptosis of those cells. 

In addition the benefit of ibuprofen would be to treat inflammation induced by cancer, the ascites that sometimes results and the attends pain.

This seems quite exciting because these things should be easily added to my protocol if they are effective and if they are useful are relatively cheap to take.

I am definitely going to pursue this when I get back and in the mean time book an appointment.

My cough has been pretty bad since I have been away but today, touch wood, it seems to be much better. I hope it is what Pete says, that it is only the lymph nodes effected by the dying tumours. I don't feel ill other than that and the fact it comes and goes is a good thing. I am hoping by the end of this break I will be as good as new.

I have continued to take scorpion venom along with reishi and more. The boot of our car was full of everything I need to do on a daily basis.. Lucky we drove really.

So today I am going to rest by the pool, listen to some music and maybe take a stroll along the beach later. Then I think I will do the same the next day, then the next and well, you see a pattern forming here. 

Au revoir!

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Triple Negative

Side effects again dominating....

by Claire21. August 2014 17:48

 

Last night I had the second il2 injection of round five. I tell you, the side effects get worse. By 8pm I had full shivers and felt rubbish. I gobbled up paracetamol again but they didn’t have the same soothing effect. I went to bed in a pickle.

Thankfully though I did kind of sleep. I slept on my back all night so I know I didn’t properly sleep but at least I felt rested this morning.

The cat was very happy though. She snuck in before we shut our bedroom door and she slept on or right up close to me all night. At one point I heard her drinking from my glass of water on my bed side table! Lucky I didn’t need any then! It must have been a cold night, that’s all I can say, because the temperature I was kicking out must have been up there. I got out of bed this morning very red faced and felt urgh...

It took me hours to sort myself out this morning. I have also been struggling taking my supplements and medications. I am not sure if it is a mental block but I really am off green juice and supps combined. It’s so weird how things change. Only a few weeks ago I really felt that taking my supplements whilst drinking my juice was a great combination. I felt energised and at ease. Now I regurgitate every time I try to take them. Even my reishi powder and oil made me vomit. It’s so unlike me. Thinking about it now is making me get all watery in my mouth. That’s a bit of a pain as its time to have my evening round of meds and juice.

Today I have been organising for going away. I have been trying to get last bits of washing done and cleaning the house so it’s nice for our return. I have also been emailing doctors and organising appointments for when I get back.

I emailed Prof D regarding getting a prescription for mebendazole. He has referred me to another clinic that uses it and says they should be able to sort me out. I contacted them and they say they would be able to help. Yay! But I need to have a consultation and then a follow up appointment costing £400 and £200... Boo!

I feel quite excited about being away. I want to spend some time thinking about the next quarter of our year. I am nearly finished with the health coaching course and I have plans to get in order. I want to have some new goals and feel fired up and ready to go.

One of the lads that did the Colour Run with me at the weekend has made a video. This really cheered me up today... I hope you like it...

https://www.youtube.com/watch?v=q4LlqMYazr0&feature=youtu.be

 

 

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Triple Negative

Side effects of il2.. where's the paracetamol?

by Claire20. August 2014 14:09

 

It was the first day of the injection yesterday. I collected my il2 injections as usual from St George’s. This time it was different. The lady that was giving them to me happened to ask a research nurse for some alcoholic wipes for me. The nurse objected to the lady giving me the injections as they had to be handed over by a qualified nurse. That led us to trekking across the hospital to the oncology ward to an unsuspecting nurse there that had no idea what to do. I asserted myself and said all you need to do is ensure I am that person stating on the package. Luckily I blagged it and get out of the sharpish. I am sure the research nurse meant well but come on... I have done it five times already!

I did the injection earlier than normal and started to feel the effects at about 8pm. I tanked up on paracetamol and then hoped I would sleep. I awoke about midnight and felt a bit iffy and waited a while before taking more paracetamol. I slept quite well and woke surrounded by fur; the cat and teddy bears that Pete had put in his place. It was lovely.

I dragged myself from bed and got on with my day as usual. I have a busy one today as we leave on Friday for a little road trip. We will be away a while on vacation in France. I am sort of looking forward to it but I find preparing everything a strain on my brain! And I am starting to worry about leaving the kitty behind.

I read up again on the side effects of il2 and why I feel like I do. It says that whilst taking it I could have lower blood cells than normal making me susceptible to infection. The ailments I feel such as aching, fever and generally crappy, are all perfectly normal. I also had a racing heart and on reading, notice that is also a side effect. I think like everything it is accumulating and the side effects come quicker and last longer. Prof D did say that I could reduce the dose myself but part of me thinks it must be working so stick with it.

What I would really like to do over the next few days is...nothing. I want to lie down and watch TV and then read some magazines. I know I will be able to do that soon but I don’t want to spend my holiday lying down the whole time. I like to be active and sight see.

I have been using the nebuliser today again with a combination of distilled water and bicarbonate of soda. It kind of tastes odd and sometimes takes my breath away but I want to keep going with it. In fact I am going to have another hit of it now to finish of today’s dose.

After Thursday I won’t be having any further injections for about a month, due to being away and timings. I feel a bit apprehensive but hope that some time away with family and friends will be enough medicine for me.

As we are driving I am taking everything that will benefit me such as my juicer, nebuliser, yoga mat and more. I hope it all fits in the car!

I can’t wait to spend time with my Bear... Happy thoughts. X

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Triple Negative

I haven't been able to walk since the Colour Run!

by Claire18. August 2014 15:10

 It actually hurt getting up at 5.30am on Saturday morning. But we had arranged to meet everyone from Pete’s business in Witney where the coach would pick us up at 7am.

It was extremely early to be going to the Colour Run in Birmingham but we wanted to ensure that we would be one of the first ones there so we wouldn’t be held up in the huge numbers of people running.

We were actually the first people there! Haha! Right on the starting line, there we all were. We had such great banter all day and mostly stuck together throughout the race. It is no secret that i am rubbish at running at even a 5k race was too much for me! I walked a few times but I still cracked through it in about 40 minutes. It was such fun having powder paint thrown all over you. We all looked a state but had so much fun. After the race there was a mini festival where we all danced and threw paint over each other. We were like a bunch of big kids.

All the while I thought of Leanne....

Donations have been coming in and we would like to thank everyone that has donated so far... We are creeping up to the £20,000 mark. It has been steadily going up over the past two years and we aim to keep going. It all helps, we hope.

I have to admit I haven’t been able to walk properly since the run. Despite exercising daily these muscles are crying out, ‘what have you one?’ Pete thinks it might be time to take up running...Gulp.

The rest of the weekend I felt under par. I had the feeling I was coming down with a cold. You know that sore feeling in the throat and the twitchy feeling in the nose. I must have felt poorly as I left my friends birthday bash early to get home to bed. Even when I woke yesterday Pete said I think you better have an afternoon nap. I looked in the mirror and the state of my under eye bags, i had to agree with hm. He tried to snuffle me up with rugs on the sofa but I just wasn’t having it. I had FOMO; Fear Of Missing Out. Whilst Pete mowed the lawn I wanted to do something too.

I had a lovely weekend and I have to say I feel a lot better. The cold hasn’t taken hold (I’m a poet and I don’t know it! Haha!) and I’m back working today and feeling great.

My vaccination site on my arm erupted quite a bit over the weekend, but at the moment seems to be ok. I am sure it be oozing by tomorrow.

Tomorrow I am back to St George’s for my next round of interleukin 2 injections; round five. I’m not overly looking forward to going through that again but needs must.

Here are some pictures of the Colour Run...

I am so very grateful for the guys taking time out of their weekend to support such great causes and for us. I'm very touched.

 

                                       

                                                     

                                          

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Tomorrow we run in memory of Leanne....

by Claire15. August 2014 12:38

 I went down to London yesterday to the London Clinic to have the next IMM101 injection. I am getting used to hopping on the train and underground and have it timed to perfection. Yesterday however despite my fine tuned plans I arrived to find that all the trains to London were cancelled.

Oh no... This was due to someone throwing themselves into the path of an oncoming train. How awful. My initial thoughts were how am I going to get to there in time so I hopped on a train to Reading. Once there I noticed a train just about to pull away and it said it was going to Paddington even though it passed through Slough where the poor soul had taken his life. With everything crossed I hoped that I wouldn’t be stood on that train with hundreds of others for hours on end. Thankfully the Universe was listening and we got there with not much delay.

Whilst travelling I spent time thinking about how confused I felt. I felt obviously put out by the disruption this one individual had caused to thousands of people that day. I felt so very sad that he decided that his life wasn’t worth living and what an awful way to end his life. I felt absolutely gutted for the train driver (whom I was told was his birthday yesterday) who had to witness the horrible mess made by a speeding train and then I thought how life is so crazy. Here I am trying desperately to stay alive and well, doing everything in my powers to find a cure or at least something to extend my life.  Then there are those who simply cannot cope with their life and want to end it all in an instant.

I have never understood depression and it has been bought into the spotlight this week with the death of Robin Williams. I don’t think I will ever understand it. I didn’t understand it when my ex boyfriend decided to hang himself and I lived with him for over 6 years.

That’s life I guess.....

Since the injection my arm has as usual gone into an explosive mess. It has reinfected one of the old sites and I currently have huge blisters which will open up and become all pusy again. The price to pay in the quest for wellness.

 

Tomorrow Pete and I along with his colleagues and about 150 other people will be doing the Colour Run in Birmingham in memory of our friend Leanne Muir who passed in June. We are also raising much need funds for our chosen charities; Breakthrough Breast Cancer and The Cancer Vaccine Institute. 5 kilometres may not be that much a challenge and having paint thrown over us does seem fun but every step of the way we will be thinking of a wonderful women whom we miss every day.

If you would like to support us by donating please go to the link below and leave message when you donate.

http://uk.virginmoneygiving.com/fundraiser-web/fundraiser/showFundraiserProfilePage.action?userUrl=makingtriplenegativeapositive

 

Thank you in advance and I will post photos of our antics after the weekend.

Happy Friday everyone!

                                               

                                                       

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I want to have a little rant....

by Claire12. August 2014 17:37

 I feel like having a little rant...

I received an email from a lady at GcMAF asking me for some feedback on how I was and if I had received any scan results lately.

I waited until I got my results and replied and explained that I had stopped having the goleic acid injections at the end of May and that I have since been having the bravo probiotic yoghurt. I explained the whole situation that I have had ablation and immunotherapy and also reintroduced naltrexone (because they say it stops the GcMAF from working)

Sunday I open up my emails and find one from GcMAF again. The email address is only ever info@ but I assumed it would be from the same lady who had emailed me before.

Nope. It was from the man in charge who runs the company; David Noakes.

His email was quite short and blunt. He stated that I hadn’t divulged the whole treatment protocol, that in fact I had only given a quarter of what is expected and that if I expected to be cancer free that I would need to do all aspects of the treatment protocol  for 6 months to a year after leaving the clinic. If I am not clear on what the treatment protocol is that I should go to the website and take a read.

I have to admit, he really pissed me off. I met him briefly when I went to Switzerland this year and he was slumped on the sofa with his big messy eyebrows and said,’ Who are you?’ when I came out of treatment. I extended my hand and told him my name. I instantly took a dislike to him.

My friend Leanne, who sadly passed in June, also had some experience with David Noakes. He spoke to her at length on the telephone (when she could finally get through!) and basically sold to her that GcMAF would definitely cure her -100%. I don’t know about you but my tail tingles when these sorts of claims are made. If it was that easy everyone would be doing it.

Luckily, I overlooked him and have continued with injections for some time and am now using the bravo probiotic yoghurt. It seems such a shame that one individual can cast such a shadow over a potential aid in living with canSer.

I have today read the website once again. They have thankfully updated it and it doesn’t seem quite as unprofessional as it did and gives a lot more advice on it than before. I do find it quite amateur to suggest such basic things however I guess not every canSer patient is as researched as some.

Here is an excerpt of the four areas that you should cover to become canSer free;

If you have a cancer with tumours, for the Home Protocol you need:
1. For stage one, a standard dose of 0.25ml Goleic a week, for stage 2 two doses a week, late stage 4 up to a full 1ml a day. The more the better. 2ml a day has been taken without side effects.
2. 10,000 IU of vitamin D a day,
3. Eat white meat, fish and vegetables,
4. No sugar or carbohydrates (so no cereals or bread etc) which feed cancer.
5. If your weight drops below your perfect weight for your height, take Branch Chain Amino Acids (BCAA) from a vitamin shop, or Master Amino Acid Pattern (MAP) from Dr Reinwald Healthcare.

If you add drugs to this, the more you add the more you will reduce your chances of success. More is less.

Don’t stop the Goleic until 8 weeks after you have scans proving you are cancer free, or 8 weeks after your nagalase drops below 0.65.

We are just as successful with pancreatic cancer, and with our two multiple myeloma cases, but it takes doses of two ml a day initially. We’ve done laboratory experiments on leukaemia which indicate we should get good results, that too will need 2 ml doses, but intense chemotherapy does make leukaemia treatment fail.

Avoid the five main causes of cancer
1. Too much sugar
2. Lack of vitamin D3
2. Poor nutrition lacking in amino acids and trace metals,
4. Lack of oxygen and exercise,
5. Severe shock stress.


Now I was advised to take 2.2nl every other day. That came to about 2000 Euros a month. That’s a lot of money but I guess when you want to live you will pay any sum.

I have now seen that they have opened more clinics across Europe including Germany. The cost for one week in the clinic is 6000 Euros. Wow. It’s doubled in price. They recommend you have about two or three weeks to see a reduction of approximately 25% in your tumours. This still astounds me as they can’t possibly record the size of the tumours that are in the lungs, like mine.

It says on their website that if you take medication at the same time as the GcMAF protocol that you will not get a good result.

‘If you add drugs to this, the more you add the more you will reduce your chances of success. More is less.’

WHAT?

I don’t know who wrote the content on their website but things like that really do make you doubt the efficacy of the product and treatments provided.

I find this really difficult. I think that for me, GcMAF may have helped kick start my body into fighting canSer. That combined with everything else I have done since March; ablation, immunotherapy, dendritic cell therapy and more. It has worked for some people and their testimonials are on the site. I personally know one of them. But it really gets up my nose when someone like ‘him’ bleats at me in an email. He has no people skills and isn’t a scientist or oncologist. He is a salesman who wants people like us to pay thousands to him. I personally think they should stop him from taking phone calls, emailing patients and making outrageous claims. It gives GcMAF a bad name.

Rant over... I wonder what his email reply will be? I will keep you posted.

 If you want to read website then go to;

https://www.gcmaf.eu/

 

Oh my goodness.. I just came across their other website; www.immunocentre.eu. Their feedback page has an entry by Immuno Biotech Ltd (the company that owns GcMAF) I am speechless...

'The most extraordinary case so far is a 69 year old woman from Cheshire. She arrived at our Lausanne clinic with breast and lung cancer, and further secondaries in the brain. The cancer was so far advanced she walked upstairs to the treatment room, and died. Her heart had stopped, no pulse, no breathing.

Her family were not happy, and made it very clear.  Meanwhile our two nurses began mouth to mouth resuscitation and pounding the chest of her dead body.

After 45 seconds they restarted her heart.

Lyn had called an ambulance and got 2.5 mil of Goleic into her. To our great relief the Swiss ambulance crew just wished to know if it was euthanasia, because if so, they would not resuscitate her. We said “No way, she’s got to live!”

The next morning the hospital sent her back with the comment she was too fit to be with them. In our view, that’s the Goleic working overnight.

Lyn then got a 40% tumour reduction over the next week, using what we call “The Swiss Protocol”,  which included Goleic every day, and sent her home to do our “Home protocol,” which her family are following accurately.

There weeks later the family returned to Lausanne to thank us.

We are expecting her to be cancer free about September 2014. She’s making good progress.'

If you could see my face right now...

 

 

 

 

 

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Triple Negative

Squeezing everything out of life....

by Claire11. August 2014 13:53

I am so sorry for the lack of blog since my last one, which was quite an exciting one! I have been ultra busy since then.

Last Wednesday I went to London to collect more interleukin two injections and also had a quick chat with Professor Dalgliesh. He seemed very excited when I told him that Professor Harris had supported his work and said that he feels I should continue with his treatment. Professor Dalgliesh said he really respected Professor Harris. He wishes that it was the same for the doctors at the Royal Marsden. It seems crazy that all cancer doctors aren’t all supporting each other. This is why we are no further forward with a cure or a vaccine.

I started having the injections that evening and finished Friday evening. As before, I had fevers and very disrupted  sleep. I eased the pain and fever with paracetemol but it seems to have quite a bad effect on my stomach now too. I get stomach aches when having my green juice and supplements in the morning and over the weekend I even felt nauseas for a while. Pete says it seems to affect me worse than chemo did. I felt ill over the weekend, generally under par, emotional and grotty. I even went to bed last night feeling achy and off. I had diarrhoea for most of yesterday too.

I actually forget that I have been having the injections and start wondering what can be making me feel rough. But then I think back to the last round of injections and remember feeling pretty rough for that weekend too. I think maybe it is an accumulation of it. The lumps where I inject in my tummy are still raised and itchy. I hope they go away soon.

Thursday was an exciting day for me too. I hopped on a train to London yet again, this time to meet my friend who arrived from Ireland for a few days and to go to a photo shoot. Breakthrough Breast Cancer had contacted me and asked if I wanted to take part in a magazine feature. Prima Magazine as part of October Breast cancer Awareness Month wanted to tell the stories of five breast canSer survivors, me included. I arrived at a cool studio in East London and was greeted by Jo from the magazine and the photographer. There was lots going on with the other ladies choosing clothes and being made up behind a screen. I have to admit I had thought on the way there, ‘Why did I agree to this?’ As usual my nerves were kicking in and I am not great in front of a camera. My cheeks twitch and I feel a bit like Chandler from Friends in the episode where he has his photo taken with Monica celebrating their engagement. I knew it was going to be fun and it’s so lovely to be asked and to think that people may want to read about me.

I was shown a rail of clothing and met the stylist and her assistant, who said I looked trendy and that she hadn’t bought anything along for someone so trendy. That was really sweet of her. I did find something I wouldn’t normally wear but all the other ladies were wearing bright clothes so I decided to join in. Being made up was very relaxing (I especially liked the eyelash extensions. I looked like a cat from a Disney movie!) and talking to the other ladies was so interesting. We had so much to share about our own stories and they have all overcome so much.  The ages started from 34. Many of the ladies there are part of other campaigns for other charities such as the Look Good, Feel Good campaign and the Breast Cancer Care fashion show later this year at the Grosvenor Hotel. They are all so confident and brave and I thought they all seemed to love life. We discussed juicing and diets along with our experiences with chemotherapy. I was the only one there with secondary canSer I believe. I discussed with the stylist who is also a survivor, the treatments that I am currently undergoing. Everyone I spoke to seemed in awe and didn’t really know anything about the treatments such as immunotherapy.

When we finished there my friend and I hopped on the tube and met Peter and his colleagues who had been working in London all day for a cheeky little drink before our journey home.

Friday I spent with my friend showing her around Oxfordshire and having a lazy lunch and did a spot of shopping. Back home, I did her a shellac manicure, HD brows and teeth whitening. She was well and truly pampered. I loved making people feel happy. That evening we went out for drinks and a meal. All throughout these days I was trying to ignore the side effects of the injections. To be honest I struggled at times.

The weekend flew by and by yesterday I felt a mess. I wanted to do so much but I really needed to chill out. Pete looked after me as usual by rugging me up on the sofa and Kitty even joined me for Sunday afternoon cuddles. The first time in months.

Throughout this I have been trying to keep up to date with emails and have been contacting Dr Hembry in Bristol. I have enquired about having some infusions. I don’t want to become complacent with the treatment I am having and I believe keeping canSer on its toes is essential. The infusions I requested are; artemesinin, NaBic, B17 and salicinium. This is because my RGCC blood test showed I would be responsive to these. Sadly Dr Hembry can only help with one of them so has given me details of a doctor in London who I have today emailed. He has already replied and said he can help with salicinium and artemesinin. I have to get consent from my gp or consultant before proceeding but in the mean time I will get more information and the costs for it.

Today I am back to my usual rituals and I slept pretty well (I love fresh bed covers!). I did wake for a while, worrying about stupid things, not health related. It’s unlike me but apart from that I feel much better today. My stomach is aching less and I feel much brighter, so much so I could exercise this morning.

There is so much coming up in the next few months I think I am feeling a bit overwhelmed. Silly me. Letting my head take over again. I must take a deep breath and take it all in and enjoy life.

Here are some snaps of the photo shoot. I will be featured in Octobers’ issue of the Prima magazine which is out in September.

 

                                            

                                                  The lovely ladies organising the day....

                                                      
                                                                     Styling us...

                                                  
                                                         A quick snap of a four of us....

                                       
                                                     A sneaky peek of the computer.....

                                                   
                                                   Modelling skills come naturally to us...

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Triple Negative

Scan results day... Not as bad as we thought?

by Claire5. August 2014 16:02

Phew.... today has come and the dreaded wait for scan results is over. Before I give you a full break down of the results, I’ll just say that the last few days despite having this horrific wait and awful trepidation looming over me I have actually been feeling physically and emotionally so much better. I was trying to explain to Pete, I don’t know whether it is because I have had time to recover from the il2 injections or because the blue scorpion venom could be helping or because I have added more green tea in the form of matcha into my daily juices, or because of them all? But I feel I have more energy, more settled and more balanced.

But then they to throw all that off I have been waiting for CT scan results. I was fine, I thought, up until yesterday when I just fell apart. Not in the normal way, where you break down and cry and can’t keep it together. In fact I had clients and things to do but as the day wore on I could feel more tension, apprehension and my mind taking over. By the time bedtime came I was bewildered and scared. I cried, annoyingly, as I didn’t want to upset Pete, who all along kept telling me things are going to be fine. And you know everything will be fine but the mind does what it wants... It is afraid of what might not happen. Most times when we think these awful thoughts, they don’t ever come true. I think maybe I get so afraid because I want to prepare myself for the worst.  

I woke up extra early and because I had the hospital appointment booked for this morning, I got on with all my rituals. I really needed meditation this morning, then followed by exercise, it really helped relieve some of the tension but by the time I left to meet  Pete at his office I was grey looking and feeling very sick. On arriving at Pete’s office I was met by his newest member, a cat, who they haven’t named yet (and I am sure they shouldn’t be feeding). The cat has been frequenting the office and has been making herself right at home. She is beautiful.  She is nothing like my little minx. She purred, snuggled, let me hold her and actually was a really tonic for me. I calmed right down and left for the hospital feeling much better than when I had arrived there.

Unfortunately traffic was a nightmare and we arrived a tiny bit late, but that didn’t matter because the clinic was 50 minutes delayed! Argh... more waiting.

Finally we sat in Prof Harris’ office and there we waited for another 15 minutes at least... Oh... my...god!

About to vomit on the floor in walks the Prof. He apologised for not having told me the results over the phone but he said they are quite complicated and not as black and white or as straight forward as they read. Plus he wanted to see my response and face... ha ha! That sounds really funny....

He was right, the way he explained it, it wasn’t straight forward. It was the longest report I have ever received. So as not to confuse you, Pete has written a piece that we shared with our friends and family earlier. As you all are family and friends to me, here it is;

SCAN RESULTS

‘We have received the most extensive scan detail ever. At first these seemed to be negative with the usual "DISEASE PROGRESSION". But all of a sudden, from the subs bench, we have been joined by none other than Prof Harris. This is like having Messi back on the team. With a cheeky smile he said "I wanted to talk to you personally as it’s very complicated and I have been doing some research"

It actually wasn't complicated at all, (if you have as much immunotherapy in CanSer research under your belt as Claire and I) but it was a huge relief to know that Prof had understood what we are achieving and he has turned the triple negative into a positive and is on board.

So firstly the two big tumours in Claire's right lung have got quite a bit larger, however, this is because they have died inside from the ablation and are effectively bleeding themselves to death and are full of fluid and craters - NICE ONE !!

The two tumours in the left lung are stable - YESSS

The lymph tumours have become necrotic (imploding prior to death). This is hugely significant. The lymph is the most active centre for our immune responses. Therefore if a tumour is surviving there (as these have done) you can be assured, that it is double hard, the meanest baddest tumour on the block - so if they are dying, the rest of the body should have no problems.

And then we have the big one NO NEW METASTATIC DISEASE !!!!!!

I am sure you all know that the last 6 months have been a huge gamble. The stake was Kitty's life and we have both spent hour after hour, deliberating on whether the ZERO approach to Chemo therapy was right. We spoke about the good friends we have lost and always had the incredible fear that we were letting the canSer grow.

GcMAF yoghurts, blue scorpion poison, raw food, 1000s of supplements and a regime of hard physical fitness and mental fortitude seemed no match for the nuclear power of chemicals - but thank God and the Universe is seems to be working. 

As Prof proudly said to Claire, "You are officially my longest surviving non chemo patient"

I think we would both like to say thank you to all our friends and followers, who make such a huge daily difference and who are literally keeping Kitty alive with positivity and love. This is down to you and we could not love you more.

Light has illuminated the darkness xx’

So overall, we are really pleased. Despite the look of some of them being larger the Prof seems to think they could just be inflamed and full of oedema where they are dying from the ablation and immunotherapy. The lymph nodes are either smaller, necrotic or the same and the left lung is the same as before. And there is no new disease.... this is brilliant. My biggest fear is spread to other parts of my body. When Prof said that I was his longest patient without chemo, he seemed really pleased. He had a student doctor or someone in with us this morning and he seemed very proud and almost trying to take some credit for the outcome so far.  I gave him a copy of my RGCC blood test that I had done back in March to show him the chemo’s that would be beneficial and the complementary things that look to work for me. He said, ‘I told you that carboplatin, gemcetibine and eribulin would work for you. You didn’t need to spend this money on the report, I have 30 years of experience’. So I kindly showed him that on the same chart that vinorelbine and capecitibine didn’t work for me yet he gave them to me anyway! That took the wind out of his sails slightly. Despite all the wait, worry and the torment of getting results face to face (my pet hate) it was actually still good to see the Prof and to know, as Pete says, that he seems to be thinking our way and that he really is on board with us. 

We told the Prof I am taking blue scorpion venom. He always has a smile on his face as he takes down the notes of my newest supplements and ravings. We told him that Fidel Castro uses it. Prof said, ‘is he still alive?!’ Ha-ha. Yes because he takes blue scorpion venom!

I also told him that I have had a cough, not a chesty one, but a little tickle near my throat for about a month. He said that correlates to the lymph nodes on the extremities that are inflamed. Wow, that’s so interesting.

I can’t tell you the happiness that I feel right now. I know it’s not over. I know the results could have been better and clearer but small victories are worth so much. Deep in our guts we knew things were OK. It’s so hard imagining anything being in there when I don’t have any symptoms but keeping this well is the aim of the game.

My bear can’t get home quick enough. I just want to cuddle up on the sofa and have a big sigh of relief and go to bed knowing that we can rest easy, just for now.

Off to London tomorrow to collect more il2 injections.... Here’s to the next stage of whooping it’s arse!

                                             

                        Me and the new office Kitty. She's just like a Disney character.. look at her eyelashes!

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Triple Negative

A dreaded phone call from the secretary....

by Claire31. July 2014 16:29

 

I have been feeling really good the last few days. I feel like a different person compared to the one I was last week. The only thing I can put it down to is the injections of il2 and maybe combined with the IMM101, because who knows what that is doing to me?!

My day was bumbling along nicely when I got a call from a secretary at the hospital, here in Oxford. I hadn’t emailed asking for my scan results in the last two days because I thought they would get there in the end. The secretary said that unfortunately Professor Harris, my oncologist, has decided he thinks it is best that I receive my results in person on this occasion- In a week’s time. Oh god.... I felt sick. Adrenalin pumping around my body, then I started shaking. I said to the secretary, 'But surely he does realise that I will feel absolutely awful for the next week?' She said her hands were tied. I tried to probe her by saying, ‘I take it the results aren’t good then?’ She said ’I don’t understand the results and what they mean so I cannot pass comment.’ OK, I reluctantly wrote down the time and day that Prof wants to see me, next Tuesday. I asked if the Prof could at least call Pete and talk him through the results today. This would give us time to digest the information before we see him next week?  She said she would ask him then call back.

All in a flap I emailed Pete the title saying, Oh God... I then got a call back saying that due to the trust policy Professor Harris was unable to call and discuss my results. These are MY results aren’t they? Not in the mood for arguing or causing more aggro than necessary I just agreed that next Tuesday would be D Day then.

I got a reply from Pete saying quite bluntly. ‘The results won’t be all bad Kitty.’ The radiologist only has my last scan to compare it to. They have no idea that I have ablation because that was done somewhere else. I have small lumps all over my tummy from the il2 injections; not sure what they would look like on a CT scan and so on... He’s got a point. He said ‘This battle is far from over and we have so much to fight it with yet.’ So matter of fact and well.. normal. He's brilliant.

 Actually by the time I read his email I had calmed myself down quite a bit. I thought to myself it could be anything. It could simply be that the tumours that were there have grown. My mind initially was thinking that there were lots of new tumours, in new locations... You know the worst. But I have to keep reminding myself that despite the niggly feelings of illness I don’t have any symptoms still. Surely this is a good sign?

I refuse to let my 60,000 thoughts a day go on worrying about what might be. I am not using my imagination on worry. So when Pete came home we had a big cuddle and continued on as normal. I have to admit it was on my mind a bit but I didn’t express it much.
Ironically I slept like a log! The deepest sleep I have had in a while now! Go figure? I simply don’t understand the patterns I go through. Weirdly enough whilst lying in bed before I fell asleep last night I had the urge to public speak. I hate standing up in front of people and talking. In fact I would call it a phobia. I blush and feel terrible. I must be having a mid life crisis or something!

 

 

Today I have decided to revisit a few things that have popped up recently and I always think when they keep coming forth then it is worth investigating again.

Mebendazole is a worming medication. Usually children who get worms take this form of simple medication. I was kindly offered this information by a virtual friend who has got my back, (Thanks Daniel) and I also heard from Pete Trayhurn (Another canSer go-getter) that he is also taking it.

Mebendazole apparently combined with cimetedin which I already take should be goer, straight away. On that basis I think I will get myself some ASAP. What harm can it do? Stop me from having worms? Ha ha!

Here is a short explanation as to why mebendazole is useful for canSer treatment that I took from the information on this link;

http://www.viewzone.com/mebendazole.html

'If you have ever cared for young children then you are probably familiar with this medicine under the name of Vermox, Ovex, Antiox, and Pripsen. It is usually prescribed to treat pinworms, roundworms, whip worms and hookworms -- organisms that find an unwelcome home in our intestines. For some time now, scientists have known how it works, but the method of death meted out to the targeted parasites was of little interest to them. But that has since changed.

How it works...

This next part gets a little technical. I'll try to explain things in a general way. I'm by no means a scientist or biologists but I'll share with you what I have learned.

One of the misconceptions that people have about a cell is that it contains a nucleus, a cell wall and everything inside (cytoplasm) kind of sloshes around in a liquid or gel. In fact, the inside of a cell contains a kind of scaffold made of micro-tubules, also called spindles that have the ability to assemble and disassemble quickly. This network of rigid micro-tubules inside the cell gives it shape, structure and also has the ability to transfer organelles and various molecules to different parts within the cell, functioning like a railway system. But its most vital function is cell division.

Mebendazole is known to interfere and inhibit the assembly of the spindles, thus preventing the ability of the cells to divide. The cell eventually dies of old age or aptosis. Mebendazole is highly selective and somehow targets only cancerous cells (as well as a host of intestinal parasites). At the end of this article I will post a few of the many scientific papers acknowledging these facts.

You will also see why there is virtually no pharmaceutical interest in mebendazole. The big pharmaceutical companies are promoting more toxic chemotherapy drugs because there is no profit margin in mebendazole. It's yet another example of corporate profit outweighing human benefits.'

To read the full article click on the link above.

There are a few other things that I have listed that are also looking very beneficial. Once I have done the research I will share the information on here. Watch this space....

 

 

 

 

 

 

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Triple Negative

There is a battle going on inside of me....

by Claire28. July 2014 16:32

 The weekend was another memorable one. Pete was given a car for the weekend... not just any old car but his favourite car. We had the pleasure of driving up to our friends in a Bentley! Pete was like a kid in a sweet shop. It was so nice to see him so very happy.

I had a pretty bad night Friday night and despite wanting to stop annoying myself and anyone around me I just couldn’t help the niggles and pains I was experiencing and I still had one more night of injection side effects to go through.

I decided I wouldn’t have any pain anymore and took plenty of paracetemol. I still didn’t sleep and I woke grumpy again. Part of me was wondering is it the vaccines, is it the il2 injections, or is it the scorpion venom?

I simply can’t put my finger on it. To be honest all weekend I was off. Not my vibrant self and it was getting me down a bit. I hate not being ‘right’. We still had an awesome time with friends and I loved cruising around in a £200,000 car and having a little drive of it myself!

When we got home we cuddled in the garden for a while and Pete was just lovely as always. He made a tasty paella, and made the ambience perfect for our friend who spent the evening with us. It was just bliss. I think having friends around and doing things is good because it takes my mind off ‘things’. It’s when I’m left alone again I’m not myself.

Today I have been really busy but one great thing is I slept really well last night compared to the last week. I had no pain what so ever. This indicates it must be those il2 injections. I think I may reduce the dose next time around.

I still haven’t received any scan results and the secretary has even emailed the radiologists to find out where it is. I emailed the secretary to tell her that I will not be attending my clinic appointment tomorrow in that case. She totally understands. To be honest, today I am past caring what that report has to say. I almost don’t want to know. I am living in denial today.

This morning I was woken by my lovely man who got up early and cleaned everything from last night, bought me hot lemon and my medication. He told me to stay in bed and try to chill out more because I don’t do enough of it! This is the man that works all the time, has the pressures of the whole wide world on his shoulders. He is so super wonderful it makes me cry. I feel guilty for moping around and not being on top form.

I don’t know what is wrong with me. I am not myself. And I don’t like it. I feel a bit in limbo. I am nearing the end of my health counselling course and there are a lot of decisions to be made and work to be done. I simply don’t feel like it right now. I keep wondering if it is hormones because I usually want to do everything! I’m normally planning and doing and never stopping. The not doing at the moment is making me feel worse I think.

I have so much to be happy for and so much to look forward to. Yet I feel like my life’s plans are all squiffy. I am not sure if I am putting things off and thinking I’ll do them when I am better. How much better do I need to be? Let’s face it there is nothing wrong with me really. Only what they tell me.

So there isn’t anything that should be stopping me doing anything! I need a plan of action for every element of my life; a re-evaluation. That’s it. I need to step back and make a decision on what it is I want to change and how I want things to be.

I want to incorporate the health counselling into my daily business and advise those who need my help such as other canSer survivors who are just beginning, half way through or who have come out the other end and want to stay well. I can advise on every element of my ten point plan and that includes exercise, nutrition and supplements, alternative treatments, meditation and consultants. I am living proof of the information I can provide.  OK, I too have down days but that only makes me more real.  Even I need advice and therapy too, but I think by making a plan I will get myself to a happier more vibrant me again.

It’s amazing how such little niggly things can really throw you off course. Not only the pain at night but the acidic feeling in my tummy has been upsetting me. Pete pointed out that there is a battle going on inside of me. Of course I am going to feel it sometimes! He is so logical...But that’s why everybody needs somebody.  And I intend on being that ‘somebody’ for many people hopefully, who will require my services.

Here are a few shots of our weekend that made me smile;

                                                  

                        

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Triple Negative