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Oo this is a tricky one...

by Claire27. May 2014 17:58

 

Ah, the bank holiday weekend wasn’t bad at all, especially the one day the sun came out. The garden was our retreat and after much work we sat on our decking and took it all in. We love the sun. Sadly it has gone again but we will take it when we can.

Pete spent quite a lot of time yesterday after work (despite it being a Bank holiday) reading about the vaccination trial I am on. He found some really interesting information about how the heat killed mycobacterium has been around for a very long time. Read this excerpt;

‘In the late 1800's Dr Coley noticed that patients who got an infection after surgery had a better prognosis. He created infections known as Coley Toxins. Although he had success this became overshadowed by Chemotherapy. (Over 100 years ago)!

The ability of this type of infectious vaccine to create immune response was first shown with BCG that protects against tuberculosis and is also still used today in the treatment of lung cancer and melanoma.

Mycobacterium vaccae was used on the same principle to treat leprosy and TB. Unexpectedly this also showed improvements in patients suffering cancer. This led to the development of: IMM-101 or Mycobacterium Obuense. M. Obuense has been heat killed so it is not infectious but still produces the desired immune response.

It is proven that cancers grow due to a deficiency in immune response and IMM-101 has been shown to encourage the body's immune response and current clinical trials are being undertaken to investigate how effective this response is.’

So because chemo came along someone decided to put it on the back burner and forget all about it!

Why am I not surprised?

The vaccination sites on my arm have been ‘interesting’ this weekend. They have been pusy, yucky, growing, and painful. The one that I had first seems to have reactivated and is also giving out lots of gross stuff. Pete has been brilliant cleaning it with antiseptic wipes and dressing it daily. I try to leave it to air as much as possible but need to avoid getting them infected. I don’t think I will be ready for my next week next week. There is too much stimulation. Of course this activity does show stimulation of the immunity.  Pete read up online and he found another canSer survivor who was having the same treatment a few years ago. She too had the same response and was advised that it is good. OK I’ll take that.

 

I had a pranic healing session today and as usual it was very relaxing. In fact so relaxing I dribbled. Bearing in mind I sat up throughout! Pahaha! I was slightly embarrassed and had no idea there was that much saliva! It even left a dribble mark on my top...Shameful...

 

I’ve been thinking today, uh-oh... that’s never a good thing! I have been trying to work out what would I do if I didn’t have canSer? I have been trying to visualise living my life as I want it to be. That’s what I have been advised and I completely understand that you need to project where you want to be because your thoughts become your every cell and the mind can’t tell what’s real and what’s not. The problem is that when you have been living a certain way for so long, and for me it’s nearly four years, how do you switch that off?

Most canSer survivors will tell you that every twinge or ache and pain immediately puts the fear of God into them.  In a way having canSer and knowing where it is makes you feel more secure. You can kind of contain it. I would much rather not have it, believe me, but this is what the mind does to you.

Some people like being ill for all the attention. I am not one of them. I would gladly let all this pass but then what would my life be like? What would I be thinking about and focussing on?

We are all told not to focus on material things, that they do not give happiness. I know that love is the answer and I guess for most they have families to invest all their time and effort into. Women of my age generally have plenty of unconditional love all around them from their children. I guess I would try for a baby if I didn’t have canSer but I think I would have a fear of canSer returning. There I go again, not letting go. This is a tricky one.

This all came about because Pete asked what is the point of life? He too struggles with it. It seems so pointless when the love of your life will at some point die. one of us will be left behind. Now or in thirt years. I suppose the real question is what is the meaning of life? To me....

I have been thinking long and hard and I always put things together such as working more hours in a trade I love. But surely there has to come some positives out of this ordeal. I don’t want kudos or to be patted on the back and told how inspirational I am. I am happy to blend into the background. I think for me making Pete happy is my top priority. He needs oodles of love and I am the girl for that job. I’d like more responsibility so if I cannot have a baby then a dog would suffice. I think I’d like to volunteer my time and energy but I am not clear on how I would do that yet.

I feel that I have a duty to help others. There must be something I can do to give my life purpose, to give it more meaning.  I intend on my life being a long one, but I think I should live by my motto and that’s to ‘keep it simple’. I am going to keep on pondering on this one and will let you know if anything arises. Life after canSer feels like a world away at times but yet so close. More than anything I want Pete not to have to worry about me every second of every day. Despite knowing that worrying does no good, how does one switch it off?

For anyone that’s worried, I am not feeling sad. I am just asking the question that we all should be asking....What is the meaning of your life?

I'll leave you all with that thought....

Light and Love. XX

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Triple Negative

Cheeky midweeky...

by Claire22. May 2014 15:56

 

I had a visit to my local hospital Tuesday to see my oncologist Professor Harris. It has been months since I saw him and apart from emails regarding treatment options we hadn’t had any communication. It was good to see him. He seemed pretty happy. He said that he had received a very nice letter from Professor Dalgliesh. They seem to really like getting letters from each other. It strokes their egos. I think it’s great because I get good service, as it were.

We discussed my current treatment plan and he said it hopefully the other lesions will go. He said there is no point me going on chemo until we know what the ablation and immunotherapy do. I am booked to see him for an update in July and I think I will also ask for a ct scan then to see what is happening on the inside. Fingers crossed the immunotherapy is doing its thang! I had no intention of going on chemo yet (if ever).

What I do know is that the immunotherapy jab I had last Friday is huge and very yucky looking. It’s sore and nasty looking. You can see for yourself in the picture. It’ll all be worth it if it’s working. It is clearly doing something!

                                             

 

Prof Harris said I have the biggest file of all his patients, especially as they are not treating me... ha ha! He seemed so very pleased and bright. He’s cool in my books.

 

I had an email from Dr Nesselhuts clinic advising me that I need to contact RGCC who made the vaccine for the EBV and to ask for it to be reissued to my home address or to the clinic for my next visit. I replied and told them they need to contact RGCC and request it. Why would I do it? They say that it is the manufacturers fault but I still feel they have to request it. Hopefully when I go in July the vaccine will be there...

 

Yesterday I had acupuncture and auricular therapy. We have been discussing the fact the lesions that are growing are mainly in my right side. My therapist says it could be the liver is stagnant. He loaded me full of needles including in my ear and I lay there for about half an hour. After I felt all buzzy and stimulated. He is such a nice guy...

Last night Pete and I had a lovely meal and overnight stay at a local hotel. We decided having 'cheeky midweeky’s' as I call them, are good for the soul and a nice way to keep things fresh and exciting. Then this morning we had a champagne breakfast before we got on with our days. So decadent but lovely...

 

                                               

 

My friends have posted on FB today that they are going to be climbing Ben Nevis this weekend in preparation for the Three Peak Challenge they are going to do for my chosen charities later this year.

Well I hope the weather improves as it has been tipping it down here today! Has the summer gone already? I only just started wearing my flip flops...

 Here is their donating page for anyone that wants to support such a courageous attempt;

http://uk.virginmoneygiving.com/fundraiser-web/fundraiser/showFundraiserProfilePage.action?userUrl=Kittysclimbers&isTeam=true

 

 

 

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Triple Negative

Ah, what a weekend...

by Claire19. May 2014 14:55

 

This weekend was brilliant. Brilliant weather, great mood, fantastic experiences and most of full of love.

I met with friends on Saturday and had a girly lunch at Blenheim Palace. Not your every day destination but truly fun, then I was picked up by my man and taken to our friends house where we had a lazy afternoon and evening with yet more friends having a huge BBQ! Highly impressive. All this eating is amounting to weight gain I hasten to add.

We got home early yesterday and had a day of sunning ourselves planned in the back garden but as ever we cannot sit for five minutes and before I knew it I was painting and Pete was mowing the lawn. By the afternoon we sat back with huge satisfaction that the garden looks great. We then had the pleasure of Pete's sister joining us for a brief catch up. I think for once both Pete and I can safely say we had enough sunshine. For that day anyway! I am little pink today.

The vaccination that I had on Friday has certainly grown in size and resembles the last one. It looks pretty angry so I think we can safely say it has responded well again.

Today I have used the nebuliser with GcMAF. I currently feel great I just hope my insides resemble that feeling.

I am still waiting for a response from the clinic in Germany regarding the EBV vaccination. They have said they need to speak to the doctors before they can get back to me. Well go speak to them?!

I feel all over the place today. I am working and trying to plan future trips as well thinking about cleaning the house! Ha ha...

 

                                                

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Triple Negative

Vaccinations, London twice and now something else to try get resolved...

by Claire16. May 2014 19:31

 

It’s been a busy couple of days with hospital appointments. I got up at the crack of sparrows and drove to south west London to where I will be having ablation later in June. I met with a consultant (not the one that will be performing the procedure) who was very nice and seemed very kind and caring. He gave me the low down on the treatment and explained that the microwave (not radiofrequency as I was told previously) ablation would be done with me lying face down. They will gain access with needles between the ribs or thereabouts. They will make sure they get a clear margin all the way. He explained that ablation can be performed more than one. He said that by thermally ablating two of the lesions can encourage the others to die off too. Wow.... I hope so.

He explained that I would get a pneumothorax and that the lung will partially collapse but as I am a healthy individual it should sort itself out pretty quickly and he doesn’t anticipate me being there more than two nights. Fingers crossed eh?

I was then directed to the private health office where I was told to take a piece of paper with notes on. There the lovely ladies looked up the procedure on their computers and advised me of the cost; £1191 which includes one night and for every extra night a cost of £468. Then I need to find out the consultants costs... What? I hadn’t been told that but I am not overly surprised. I guess I need to email the consultant then. Still it’s cheaper than going to Germany so far.

I hopped in the car feeling all pleased with myself for having driven my way through horrendous M25 traffic and realised I had the rest of the day to get things done.  Getting up early is pretty cool! I spent the rest of the organising and working but still managed to get some meditation done in the back garden catching a few cheeky rays. I love the sun.

Today I had to hop on the train and head up to London again, this time central London. I made my way to the London Clinic for the second vaccination of IMM101. I arrived early and the nurse said that the mark where my last vaccine was looked really good and showed that I have responded well. The trials doctor then came along and asked me how I felt and then examined my lymph node regions; under the arms and round the collar. All seems fine so he gave the go ahead for the second injection. So far this one hasn’t come up quite as red or raised.  Oo I hope it’s still responding well.

Whilst checking my mail on the train I got an email from Dr Nesselhut's clinic stating the ‘antisense’ vaccine I was waiting for on Tuesday didn’t end up arriving until 5.30pm. It was fortunate that we decided not to wait. We would have missed our flights. The email then said the manufacturers have stated that it can be kept frozen for three weeks and for this duration it will remain stable. Can I go back within the next three weeks for it to be administered? WHAT?

I replied and asked them if they were joking and that I was informed on the day it could wait until I return in July. I have insisted they speak to the Dr Nesselhut and get back to me with a solution. Either it can be done again, they come to me or they send it over to me and I get someone else to administer it. I am still waiting for a reply. That really takes the biscuit. I don’t want to die and I will do anything for my health but would I be mad to simply hop on another flight, drive all the way from Hannover to Duderstadt have an injection and then drive all the way back to the airport and get on a flight back to the UK? It sounds feasible if I had the funds and time, which if it came to life or death I guess I have. If I could go on my own then maybe I would consider so it doesn’t cause such an upheaval for Pete and work but not until they think about a better solution. I don’t feel overly stressed at this point but I am getting used to their f*** ups! To be fair it wasn’t Dr Nesselhut or RGCC, it was the courier company, but part of me wonders why didn’t the vaccine arrive when they requested it be returned on the 12th not the 13th?

There has to be a solution. I have no idea what effect this vaccine will have on me but I do feel quite excited by the fact that if Epstein Barr Virus is cured inside me then maybe my immune system might start working properly. EBV is proven to cause other canSers, not breast canSer but who knows what is happening inside of me?  It never runs smoothly... We will figure it out.

The weekend is crammed with fun stuff and the weather is looking good. Whilst Bear is out I am pampering and preening myself... Now for a cheeky glass of something cold.

Have a great weekend all!

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Triple Negative

Please let this thing end...

by Claire14. May 2014 16:08

I'm sitting in my garden for ten minutes in this beautiful sunshine before I have to get ready for my next client.

We got home late last night but the flight was great with few people on it and the steward took a shine to us and gave us extra drinks. ( who can resist our puppy dog eyes?!)

The afternoon hadn't panned out as it ought to have at Dr Nesselhuts. We left late because we were waiting around. I was due to have my usual vaccine as well as an 'antisense' vaccine for Epstein Barr virus. Sadly though the courier didn't arrive. He left Berlin at 8am and at 4.45pm he still hadn't arrived and no one at the depot knew where he was. We waited for as long as possible and even though we left and saw a DHL van we turned back in the hope it was my vaccine. But no...

A little annoying to say the least. They are going to keep the vaccine frozen until my next visit which we have booked for July. 

I had results of blood analysis too yesterday. I was surprised to see that my natural killer cells are really low and my suppressor cells are really high. It should be the other way around. This puzzles me. I eat well and consciously try to take supplements to boost my immunity. Clearly they are not working or I am not taking the right things. Dr Nesselhut says to take coriolus otherwise known as turkey tail mushroom. I already do. How much? A 1000mg per day. Dr Nesselhut tilted his head with agreement on the amount. I guess I'll have to try harder.

Pete in his usual way said not to worry and gave me an explanation but I have to be honest I am finding it harder to remember everything. I just know I have to keep doing what I am doing and then some. 

 

This morning Pete woke me by calling on his way to work after the gym. He was is such a great mood and told me to look out of the window and see our rhododendron has finally flowered. He is so positive and full of love. I couldn't be more proud of him. He told me that if I am tired today to rest and catch up with stuff later.

 I have to admit I feel wrecked and a little odd. My body is vibrating and I definitely feel a change in my energy. It's probably the vaccines and treatment I have had. I feel like I have been exercising. Well I have but this feels different. I'm going to try to be good to myself...

 

I love being at home but today has been a whirlwind. I had my usual routine start to the day and then have been emailing my oncologists secretary all morning. I am off to London very early tomorrow to see the radiologist specialist who will be performing the ablation surgery in June. He wanted a copy of my last ct scan. The secretary has been brilliant organising it and apparently it was due to arrive today at her office then I could collect whilst at the hospital having my blood test. Nope... Wasn't to be. So I won't take no for an answer. I went to the radiology department and showed them the emails between myself and the secretary and they did me a copy there and then. Sheer bloody mindedness will get you everywhere....

I then get home to find an email saying that the ct scan has been emailed to the specialist... Ha ha! Oh well all bases covered.

 

I have had a good response to the vaccines yesterday as well as the interleukin 2 jab. My arm is red and raised and really quite itchy. It normally goes red but subsides within twelve hours. This is new. The spot where the jab for the immunotherapy by Dalgliesh looks better but is also itchy, a bit like it is healing itchy.

 

I sat on the flight last night and we watched in wonder at the sun setting whilst we were above the clouds. I felt really serene.. But then thoughts of all the people we keep seeing in Duderstadt from all over the way world came into my mind. There was a guy on our flight who we had seen at our hotel and at the clinic. He clearly had a brain tumour. It's unbelievable the amount of nationalities we are seeing there now; Asian, Australian, New Zealand, Chinese, Arabic, Portuguese, Russian and more.

It's so weird because when I first got diagnosed I remember thinking why me? Out of all these people why me? But now I feel crowded, almost claustrophobic. It's like an epidemic and everyone is getting infected by a disease that is catching (but of course it isn't) and there are now only a few who are not ill. It's a really strange feeling.

When will this ever stop? Or won't it. 

 

Just heard the sad news that Stephen Sutton who has raised so many millions for charity has today died too at 19 years old.

 

Please let this thing end.... 

 

 

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Triple Negative

Sad news......

by Claire13. May 2014 11:43

It's amazing how one nights sleep can solve so much. I feel less emotional. I don't think having female monthly hormones helps but even so I'm less tearful for no reason. Our tempers are less flared and things don't seem quite as bad as before. Sleep affects the metabolism and appetite too. Cortisol levels rise and sit round the fatty areas such as stomach.. Sleep has a lot to answer for but it has to be the right amount. I should be an expert in sleep! Ha ha!

After a marathon sleep session I headed off for treatment and within an hour had had it all. The rest of the day was ahead of us so we decided to use the hotels facilities and try to relax further. 

We began by exercising as not only is it good for the body but it's good for the mood. I know I worked out enough because today I am aching!  We had a swim, steam, sauna and finished off in the salt oasis.

We bought food from a local supermarket and had a hotel room picnic because the weather has become Armageddon like. 

Tucked up in our pj's we watched an animated movie and yet again I cried!

I'm such a softy...

Whilst sitting whiling away the time we got news.... Sad, sad news that health and wellness writer Polly Noble has died.

I have been following Polly for some time since she was recommended to me because not only was she a health advocate but she also had canSer. She had canSer from the age of 24 years old. She died at 32 years old. She had done so well during that time frame by beating it twice by simply eating well. But then it came back and in the last year it had spread to her lungs. Her primary diagnosis was cervical canSer. 

In the last six months I had been emailing with Polly because she had decided to travel over to Germany to see Dr Nesselhut. I advised her on what to expect, how it worked, where to stay, what to see, and more. She seemed grateful but had complications from her very first visit. I hoped to see her out here but found out we would just be missing each other. I am going home when she was just arriving.

I said to Pete yesterday, 'It's a shame that we are missing Polly'. Pete says it's almost as if I knew...

We had arranged to skype on my return and then we were to meet in June. I had emailed her a list of information of things I am currently doing along with info on Prof Vogl and more, for her to get stuck into until we spoke. She seemed so upbeat but did say she was having trouble breathing and was clearly feeling ill.

Polly's mother emailed me last night and said how heart broken they are and that Polly had died on Sunday.

Her mother emailed me and said how heart broken they are.  She had got news on Wednesday of a ct scan that showed her liver was filled with tumours when only six months ago it was clear. Her mother said she felt weak and tired and just couldn't fight anymore. I feel gutted to say the least. She gave it her all. My love and thoughts are with her family and friends. She was such a vibrant soul and I hope that lives on. 

 

I have just got back from my second round of hyperthemia, zometa and interleukin 2. I return for my vaccination in a few hours.

 

Life is so weird how things change by the flip of a coin. Polly wasn't to know that this was her last few months so it makes you wonder why do we worry. Would've knowing made any difference at all? Would she have done anything differently? Probably not. Yet again, I simply think one has to live their life and take every day as if it's your last. Be grateful, love one another and hold onto what you believe in.

Oh and if you can find a Bear that you can hang onto and who will make you feel safe in your hours of darkness.

 

Light and love as always....

 

C X

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Triple Negative

A mad week ahead starting with day one of treatment in Germany...

by Claire12. May 2014 11:25

I have a bit of a mad week ahead of me. Yesterday we arrived in Germany and today I have treatments including zometa and il2. We get back home late Tuesday night. Wednesday I have to skoot to the hospital to have my blood test then back home to get some work done. 

I have received a letter from Dr Gonsalves, the radiologist who will be perfoming the ablation and I am booked for clinic at 9am on Thursday in South London. That's another 5am start. I get to discuss everything to do with the forthcoming surgery in June.

Friday I am back to London for my next vaccine on the trial Professor Dalgliesh has put me on using heat killed mycobacterium.  The last vaccine has been fine. My arm looks like it has a very big insect bite on it. Nasty but nothing I can't live with.

Amongst all this I need to work and study for my health coaching course.

Life is just hectic sometimes and to top it I have social engagements. (I'm not complaining! Life is rich!) Getting the most out of life. 

 

The good thing is that I have a plan. The 19th June all of a sudden doesn't seem that far away. I am pleased I get to celebrate my birthday the weekend before going into hospital. I am very nervous but will give more details on the ablation once I have been to the appointment on Thursday.

 

The next few weeks it's seems that things are just rammed in our diaries. There has been too much eating and drinking recently and I'd really like to feel cleansed.

I have put on half a stone. I immediately feel anxious about it as I have felt great with my 'new' weight these past two years but as Pete keeps pointing out, there is more of me to fight the disease. I know he is right. It still wouldn't hurt to eat more consciously. It's easy to digress from the plan sometimes but with no regrets you resort to going straight back on the straight and narrow.

 

I have already had today's treatment. I had local hyperthermia, inhaled air from the airnergy machine, had an infusion of zometa an injection of il2 intradermally and Newcastle disease virus intravenously. I feel fine as usual. I got the thumbs up to go swimming and use the sauna etc.. Yay!

 

I'm back at the hotel now where Pete is trying to work on his iPad using the wifi and I am enjoying another cup of green tea.

 

I have just looked through the notes on my iPad and found the excerpt below from September 2012. Nothing has changed and it still sums up what I want from life;

 

My Goal

To outlive the life expectancy.

To stop the progression of cancer.

To actually go into remission and kill cancer.

To live each day being thankful and full of compassion and love.

To help other survivors to be able to have dc treatment.

To brighten others lives by sharing my knowledge and passion for a less acidic lifestyle.

To have acceptance of life and what it may or may not bring. 

 

What are your goals?

 

Love, light and more love.

Xx

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Triple Negative

Soulful Sunday...

by Claire11. May 2014 06:38

Here I am again, sitting at Heathrow airport. It's now 6.30am and I have been up since 4am. Actually if you count how many hours I rolled around wishing I could sleep then you might say I have been up much longer than that. Both of us have. The sleep deprivation we are experiencing at the moment is taking its toll. You know me I love sleep but for some reason both the Bear and I are really struggling of a late.

You can forget how hard this whole life experience is on he ones nearest to you. On the front of it we have so much to be happy for. Pete has a successful business, we have everything we want, a lovely home with an abundance of things. We have lots of lovely times with lots of friends and family, yet there are still life worries which ordinarily wouldn't make us lose sleep. But we are. Pete in particular. 

It's hard watching such a strong man who has gone through a lot of adversity already in his life to be stressed.

He wouldn't mind me writing this but life sometimes gets too much. The mind is a muscle and it can break. We have to take of our heads and minds and feed it with love and kindness. Push it too far and who knows what the consequences could be.  Pete has not been sleeping for months. All the while still trying to maintain his current life style which includes going to the gym at 5.30am every morning and working at least 10 hours a day and then taking care of our old gentlemen friend who Pete adopted some twenty five years ago (despite being in a care home now he still is hugely demanding and we have to organise clearing his flat out and bills and banks and so on) and then there is making enough money to pay for my private treatment and of course to top it all he worries about me. 

What he hasn't focused on is his own health. Ok he goes to the gym and he tries to have a healthy diet with me but that's not enough. Push him just a bit further and think he will snap. I make promises of more sleep but getting into bed isn't enough. He doesn't sleep. Poor bear. He's so tired. But you wouldn't know it as he always has a smiling face and plan of action. Good man I have here.

 

The last few days have been jammed packed as usual. Whilst Pete was at conference on Friday (yet another long day working and playing) a friend and I made our way to London at 6am to watch the auditions of a tv show called 'Got to dance'. It was such good fun and worth getting up early for. We spoilt ourselves with a gourmet meal and then a little wander round the shops. (I have no buyers remorse!) Back home we were joined by the boys(Pete and his work wife, Adam) for some banter and then an 'early' night. Yesterday was filled with lots of work and organisation and our already tired bodies had had enough. 

I wonder if I just don't cope as well as I did. This week has been a mixed bag. There have been lots of good things but then came some news.

My sister called crying. Her partner had just been told he has canSer. I feel terrible for her. It's weird because I think I can cope with it but when I hear someone else has got it I just feel awful for them. I can remember the thoughts and feelings I went through the day I was told. That roller coaster you don't want to get on is forced upon you. Bless her, my sister cried, 'what is happening? First you now Gary?!' It so hard to know what to say except to become completely practical.

I also doubt the information I have put together and wonder does my website help anyone at all? Do people really read it and take anything from it? I know I wish I had something to refer to when I was diagnosed but I notice people have such personal experiences that they do not follow the same advice.

CanSer is canSer, no matter what it is described as the principles are the same to a degree. And everyone needs to follow their own path. I can but only offer a helping hand and hope that they will make the right choices.

I feel terrible sadness for my sister and now my mother. She has another daughter who is right amongst it, up to her neck in it and more worry to have on her shoulders. The only advice I can start with is take each day as it comes. Try not worry about it until you know all the information. Easier said than done right?

 

Our heads have so much to cope with.. When it comes down to it, the worry, the anger, the stress and all of it is just fear. That's why we don't sleep and why we can't function properly. Fear is crippling. Whether you have just been diagnosed or have been living with a disease or loved on going through it, fear is the thing we need to overcome.

Worry, fear and stress just take away from all the happiness in our lives.

Life is so short, too short for some but if we didn't waste time worrying and being afraid then what would replace it? LOVE! All we need is love and when there is love there is no room for fear. I'll try and love Pete as much as I can and hope that his and my fear go away.

 

I want to urge anyone that is canSer free and think they are healthy. Start making positive changes in your life now in every way. Tomorrow the rug could be pulled from under your feet and nothing will ever be the same again.  It's not too late....

 

 I can help you, all you need to do is holler!

 

Soulful Sunday.... 

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Triple Negative

A whirlwind!

by Claire7. May 2014 16:36

 

Days fly by and before I know it five days have passed since my last journal. I do mean to put pen to paper more often but I get so caught up with life and when away from my desk it’s almost impossible to keep up to date.

There’s quite a lot to tell.

Firstly the fun stuff. Friday I had a lovely evening with my fella in a classy restaurant in London and a night in a funky hotel. We decided having little treats like that kept us interested in our favourite city. We ate at Berners Tavern, I would highly recommend it. It is a beautiful restaurant.

Saturday brunch (yes darling, brunch!) was a real treat too. We met a lovely couple whom we have been in contact with these past few months. Having met by telephone originally we decided it was time to meet in the flesh. It was so lovely to catch up and make new friends.

I may have accidentally fallen into some show shops whilst in London so we made a hasty retreat back home and spent the afternoon in the garden. The weather has been gorgeous.

Bank holiday Monday was a lazy day for many but for Pete and I we got up before sunrise and made our way to Heathrow. We had a quick trip to Duderstadt to visit Doc Nesselhut to have blood tests and blood collection for my next dc therapy there.

It was eventful as usual and it is like the United Nations these days! In the waiting room we met fellow warriors and discussed treatments and options. It’s eye opening and also comforting to know we are on the right tracks... we hope.

I had the opportunity to discuss a treatment plan with Thomas Nesselhut. Pete was being ultra organised and got his MD head on and we made a flow chart, naturally, of the forthcoming months and even years we hope.

We asked Dr Nesselhut about ‘antisense’ which we had been told about by Dr Hembry in February. He looked through my file and noticed that I had shown positive for the Epstein Barr Virus, which Prof Dalgliesh says everyone carries, but Doc said it was active in my cells not just present in my serum. This he said we should treat as it is a very inflammatory disease and causes the liver much stress. Right, ok then. Off we went for more blood taking to be sent to Greece for them to create antisense to treat that. Sometimes everything is a bit of a whirlwind but at least you feel like you are doing something. He also decided it would be good to get a full reading of my bloods and see how the t regs and everything are getting on. So off my blood went to Berlin.

Doc Nesselhut told us that the last vaccine I had was Anti PDL1 and P2X7. I don’t know much about it other than it isn’t something you can have regularly. He has said though that I will be having it again once more... I will be researching first!

We told him that that I am hoping for ablation and he thought it was a great idea. We did discuss sending him samples of my tumour that is currently stored but he said it would be best to get samples of the tumours in my lungs if possible. OK, on my list of things to ask Prof.

We anticipate that we should go back for dc therapy in July a few weeks after ablation to mop up the cells that could be floating around after ablation.  Of course we would have to travel by car as I have been informed i cannot fly after ablation due to the air pressure damaging my lungs.

If for some reason the immunotherapy doesn’t work after ablation we have decided the next step would be TACE with Prof Vogl, then if that fails I go down the chemo route of using the most effective ones found in the RGCC test. If by any chance the lymph nodes clear up then I can opt for laser surgery with Prof Rolle in Germany also.

All along side this I am currently using GcMAF and I think I will be adventurous and try to make the bravo probiotics (well Pete can!)

I may also ask Dr Hembry her thoughts on complimentary infusions. And not forgetting supplements and diet, exercise and so on.

In between appointments, I had a call from the UK. It was Dr Gonsalves from St Georges who will be performing the ablation on me. He said that unfortunately the 12th June was not possible and that now I am booked for the 19th June. OK well at least it is booked but oh my, I am waiting longer all the time. This makes me so anxious and I am so aware of how things can get out of control. I just hope I am beating it off (with a stick!)

In a small way it is quite good it isn’t the 12th June because my birthday is the following weekend. So at least I get to celebrate before having ablation, the last of my thirties!

We have agreed that I should visit him in clinic before the end of this month to get all the details (and costs!) He seems such a nice man. I feel very comfortable with him so far. He just reiterated I must not book any flights for two months after the procedure.

So that’s the plan... Do I feel better? NO! Am I ever happy? Well, yes, but fear is an amazing thing and the way it manifests itself. I am of course happy to know things are going in the right direction but I am so nervous of what is happening inside of me right now.  Gut feeling everything is ok....

After our brief visit to Duderstadt we headed off to a place that Pete hasn’t been to since he was small child with his parents. It was lovely and idyllic and we ate fish for tea...

Home now and running around like a loon trying to get everything done. I don’t know what I would do without Pete. He is amazing and really sorts everything out... Bless him.

 

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Triple Negative

Began immunotherapy here in the UK, what a novelty?!

by Claire2. May 2014 12:01

Yesterday I went to The London Clinic to start immunotherapy with Professor Dalgliesh. I had finally got a date booked and all I needed to do was turn up. I arrived a little early so took the opportunity to go to Marylebone High Street to have a look around. It’s so trendy and full of cool shops and restaurants. I found a juice bar called Roots and Bulbs and on walking noticed a familiar looking person. She was waiting for her friend and asking the shopkeepers some information on their juicers. She handed over her business card to them and I knew exactly who she was. I follow a few health foodists online and one of them is known as Better Raw. Tanya Alekseeva is a Russian New Zealander who healed herself with raw food. It was great to notice this minor celebrity on the flesh. I said hi and told her I followed her. She seemed shy but really sweet. It made my afternoon!

I spent some time with Prof Dalgliesh and had to sign a consent form before proceeding with the vaccination. The nurse was lovely and explained everything to me in huge detail. I will be having a vaccination in my arm every two weeks for next three weeks, then it goes to monthly and so on. This is all dependent on how things go and if I get any reactions in between. She explained the site of entry would look like a mosquito bite. Initially it went white and raised much like the ones I have in Germany but on arriving home I notice that it looks just like a bite. It isn’t itchy, painful or anything. I am a little concerned my arm will look a sight eventually.

On the consent form Prof D wrote that this trial was to enable an immune response so that further treatment will be more effective.

I had received an email to have ablation- finally! BUT, it is at the end of the month when I have something else booked, that I really cannot change, sadly. I thought its sod’s law! I emailed Kathleen back and said I was sorry being a nightmare but I figure I have to live too don’t I?

She replied and said that she would forward it to the doctor and that they will contact me directly.

Also she mentioned that Dr Grubnic is too busy to take on private clients now so I have been transferred to a doctor at St Georges in London. I don’t mind who does it as long as they take care of me.

I mentioned my ct scan to Prof D; he said that it sounds great and that the large two tumours will be ideal for ablation. He said that he had received a lovely letter from Prof Harris, who says he supports the treatment plan and that he will be happy to organise all ct scans at oxford. That’s nice.

I do have to have blood tests prior to every vaccination so I will have them in oxford and Emma; Prof H’s secretary has agreed to email them to me.

So it all looks sort of good.

I then got a call just half hour ago from Dr Gonsalves for St Georges. He was lovely and explained that whatever we finally agree on I must be aware that I cannot go abroad for about 6-8 weeks after. He said I will certainly get a pneumothorax after the ablation.

I found this on a forum which explains what it is;

“RFA can certainly have complications, most notably pneumothorax, or collapse of the lung, which occurs in about 30% of cases, and 1/3 of those cases require placement of a chest tube.” – http://cancergrace.org/lung/2007/03/06/rfa-for-lung-tumors/ So it’s not at all uncommon.

The NIH has this to say about treatment for pneumothorax:

A small pneumothorax may go away on its own. You may only need oxygen and rest.

The health care provider may use a needle to pull the extra air out from around the lung so it can expand more fully. You may be allowed to go home if you live near the hospital.

If you have a large pneumothorax, a chest tube will be placed between the ribs into the space around the lungs to help drain the air and allow the lung to re-expand.

The chest tube can be left in place for several days. You may need to stay in the hospital. However, you may be able to go home if a small chest tube is used.

Some patients with a collapsed lung need extra oxygen.

Lung surgery may be needed to treat your pneumothorax or to prevent future episodes. The area where the leak occurred may be repaired. Sometimes, a special chemical is placed into the area of the collapsed lung. This chemical causes a scar to form. This procedure is called pleurodesis.http://www.nlm.nih.gov/medlineplus/ency/article/000087.htm

A pneumothorax is a common complication that has no implications about prognosis. It most often either resolves on its own or sometimes requires a chest tube and then resolves

 

Right, that makes it all the more scary. He said that he would ablate the two largest lesions and that the others should go on their own from the immune response being activated.

He did say that it would be under general anaesthetic and that the ablation takes 3 minutes but getting the needle in can take a few hours. I would definitely stay in overnight and the next morning have a ct scan. If it looks good I can go home, but if not then I will almost certainly be there for about four days. Gulp.

Blimey! He did say that if air keeps getting in then I may need surgery to repair it... Suddenly this is all sounding very scary!

Anyway he has gone off to look at a date and then will call today or Monday. He said that he would like to meet me before we do it. Cool... I am happy with that plan although he muted the 12th June... the date just gets later and later!

 

I don’t have any side effects of the vaccination today and am busily cracking on with rituals and normal stuff and feel very excited as I am off to London with my man tonight. Then tomorrow is special meeting... A friend I met online. Can’t wait. Whoop!

 P.S I have attached the patient brochure on the immune therapy.

NPP IMM-101 Patient Brochure v5 0-1.pdf (316.75 kb)

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Triple Negative

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