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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

I think it's good news!

by Claire29. April 2014 17:53

 

Yesterday I had a great day at a colour analysis class. My friends spoilt me at Christmas and bought me the day as a gift. I went along and with three other women learned which colours suit me the best. We had make up put on us and then shown swatches of colour. I am what’s known as a Sultry Winter... Rrrarr... this means the colours that I look the best in are dramatic colours including black. I cannot tell you how happy I was when I got told black was one of ‘my’ colours! I love black. Most of my wardrobe is black. I’ve saved Pete a lot of money! Ha ha!

It was a real treat doing something so different and a once in a lifetime thing.

I decided to email the hospital and asked if they would email the CT scan results to Pete as I simply cannot stand going to the hospital and Pete would find a way of breaking the news to me, kindly. He would find some positives and be really thoughtful as to what he told me...

Surprisingly I got an email first thing morning telling me the Prof had agreed and an email had been sent to Pete with my results attached.

Unfortunately Pete left at 5.30am today to be at an important conference. I certainly didn’t want him to open it there and tried to calm myself by thinking I can wait until tomorrow as Pete wouldn’t be home tonight.

My heart was in my throat and adrenalin was coursing through my veins... I was overreacting, who says it has to be bad news?
I thought to myself it doesn’t matter what the news is because we will keep on doing what we are doing and it’s fine. Why should I suppose its bad news? Calm myself I thought.

I got on with my juicing and then got all comfy having a coffee enema. Is that even possible?!

Then Pete rang...with what I would say is good news!

The scan report said that overall there has been slight disease progression. There has been a mild increase in the tumours in my right lung. The left lung has had no change! Subcarinal node- slight increase and hilar node no change and looks less necrotic and the precarinal node stayed the same. No evidence of metastatic disease anywhere else! They have mentioned an adnexal cyst with follicle abutting. These may be physiological in nature.

I have obviously googled adnexal cyst and it seems that it is something to do with my uterus, fallopian tubes or ovaries. It can be nothing, a cyst, or it can be cancerous. Of course I am hoping for the best. They say it could be physiological in nature. I am guessing that it could be nothing to worry about. Therefore I won’t.

I have also got an ‘atelectactic band’ extending from the right upper lobe lesion to the pleura. Again I have googled it.

Atelectasis - collapse of a part of the lung due to a decrease in the amount of air in the alveoli resulting in volume loss and increased density. It could be seen as all sorts of things and again I won’t worry about this at this stage. It is actually on the same side that the pain I had in my ribs, chest and back recently. I wonder if there are connected? The pain is no longer but sometimes I do feel when I take a very deep breath pain right underneath. It does feel like muscular pain.

There is no sign of any new disease or spread. This is awesome. I had worried that it would spread...Overall I am stoked with the results. Pete is also very pleased- he cannot contain himself... shame we are apart tonight. But it makes even more exciting for tomorrow.

I think I am so pleased, firstly because the canSer hasn’t effectively exploded out of control. I have no new tumours and despite the new little odd things, the tumours that have grown aren’t massive and some of the tumours have actually stopped growing!

Let’s face it, I haven't had any chemo for a few months and have only been eating well, taking my supplements, having coffee enemas, had one visit to Nesselhut and been doing GcMAF. Something is working to a degree.

All that time on chemotherapy especially in the last six months and the growth was potentially quite dramatic. Then stop the chemo and do other things intermittently and there is less growth and even stabilised some of the tumours!?

I am thrilled... I know it’s still growing. I just need to get a hold of it now and stop it in its tracks.
That’s what the ablation and vaccines are meant to do....

 

So back to the ablation. I still have no date booked. No confirmation, nothing. I have emailed Prof Dalgliesh so many times and he has replied yesterday and today saying he will chase. A little more would be helpful.

Yesterday I had a feeling that whilst I was in my class that I would get a call. I picked up my phone whilst on silent and a ‘no caller id’ was calling. I dashed out of the room and it was Kathleen, Prof D’s secretary. She said she had confirmation... of the vaccine. At least it’s a start she sad. I am due to go on Thursday at 2.30pm to the London Clinic. Great... she’s right it is a start...

 

But then she said,’ It’s not us. ‘I know but how do I contact ’them’ myself? No reply. She said once they had a patient who was living in Malta or somewhere who was on the NHS. He had to wait 7 weeks to get in. I told her I am private and paying myself surely it should be quicker? And let’s face it it’s already been about 3 weeks! She said that it takes up quite a big chunk of time in theatre. I know, surely they can look at the diary and book it?!!

I am hanging on here... The vaccines have been accepted based on the ablation. So it needs to happen.  I have to be patient.  Again...

I feel really good. Maybe I shouldn’t be this excited but the fear of new tumours and spread has really worried me and I kind of knew it hadn’t but seeing it in black and white really helps...

I would prefer if the new anomalies would go away but I once had pericardial effusion and the next scan it was gone. Let’s hope that happens this time.

 

I want to thank all the positive thoughts that people shared with me. It worked. I feel like I have a future and I am not completely terrified about dying and not living forever. I know we are all one step closer to death anyway... I just feel like having extra time is brilliant. I can see the next few years could be symptom free...and I know that there are always options...

Anyway who knows what’s working exactly. I just know I ordered more GcMAF. Maybe there really is something in it...

One more client today then an evening in the bath and chilling on the sofa watching old NCIS’s. I miss my Bear.....

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Triple Negative

Disturbing the peace...

by Claire27. April 2014 16:33

 

I spent quite a few hours on Thursday night trying to get to sleep. It wasn’t jet lag keeping me awake but thinking that if only I could have some good news on Friday. The good news for me would be confirmation of ablation and vaccination trail being booked.

I really tried to put as much energy into thinking the Universe would grant me some positive results.

Friday I even took it a bit further in trying to let the Universe give me good news by calling Dr Grubnic, the specialist radiologist, at St George’s hospital who I am waiting to contact me. It’s the only details I kind find for her. I even called and spoke to her secretary, who I would like to add is another very miserable individual. They don’t know how lucky they are and also who they are dealing with. Where is their compassion? Well that’s another issue... but for now I was met with a dead end. Dr Grubnic's secretary simply said if it’s a private matter then I will just have to wait for her to contact me. I emailed her hopefully getting my message through and I also emailed her secretary hoping that he would perhaps help me by passing on the message to her. Well so far nothing.

I have emailed, called and left messages with Prof Dalgliesh and his secretary and still nothing...

Blimey if  customers who paid for a service were being made to wait like this I am sure they would be going mad at the lack of support and communications. Oh wait I am paying for it! I have felt really uptight about it. I know it is taking my peace away and I know it will happen but I can’t keep waiting.

I am meant to start vaccinations Thursday coming; surely I should have had confirmation by now? I know it’s not me being difficult and expecting too much.

It’s disturbing my happiness and actually that combined with the thought of my ct scan results you can imagine my insides are a mess. But I am the only one that deals with this. I don’t have to feel this way. It’s if I let it happen.

Thankfully I have heard from Doc Nesselhut, in fact I think their communication issue has been sorted now. I am  booked for bloods and DC therapy. I have booked hotel, flights and car hire. So that’s’ one thing ticked off.

Yesterday I used up my last GcMAF vial by inhaling it with the use of the nebuliser. It is kind of good timing if everything does fall into place with ablation and vaccines.

I have decided that in a few days I will start using naltrexone again and up my dosage to 4.5ml per day.

This weekend has been lovely... as per... I had the best sleep last night and feel completely rested. I have been to the garden centre and done normal housey things... now we are watching all important rugby on TV. It’s the normal things that make me happy. I hope it continues this way...

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Triple Negative

Three months already.. another CT scan..

by Claire24. April 2014 15:57

 

I have been out of communications for about a week. If you were wondering where I had gone well never fear... I was abroad enjoying myself. Pete and I took five days and spent them in New York City Baby!

We had planned to visit there a few years ago but with everything going on had to cancel it and didn’t want to jinx it this time so kept it a little quiet. We also decided not to share much on here or social media because we felt we should try to enjoy each other and the place more. It was a fantastic thing to do and I would highly recommend others do it too. It gives you such a sense of freedom.

New York was sensational. Despite aching legs and feeling tired, we walked miles every day really taking in every inch of the city. We did the touristy things as well as go off the beaten track and thanks to recommendations from friends who have been there and friends of friends who have lived there, we had the time of our lives. I’m a real sucker for TV programmes like Friends and Sex in the City and was thrilled to eat at  the same restaurants and have photos taken at the same fountain.. Sad I know... but simple things please simple people! Ha!

I found plenty of vegetarian and juicing places and had a lovely green juice every morning. There were durg stores selling every single supplement you could find. Amazing!

I totally felt free. The first time in ages I barely thought about canSer and it is was a bit of thud coming back to reality. Yesterday, we felt so tired on our return we had to go to bed for a few hours. To be honest sleep hasn’t been my friend the past few weeks what with the pain in my side and now a chesty cough.

I am so happy though that the pain has lessened in my side (therefore it must be muscular) and although the cough is annoying I don’t feel ill. It’s just sleep has been really problematic and I have been a bit of a zombie since.

I hoped on my return I would have an inbox full of emails from radiologist specialists and dates with vaccination details and so on in them... but sadly no. I am once again chasing and wonder how hard can it be?

I am due to start chemo at my NHS hospital tomorrow. I won’t be going. I am putting it on hold so that I can attend this vaccination trial but I really would feel a 100% happier if I just knew when I had ablation booked. All this waiting around makes me nervous and I try to take on board the teachings from my meditation challenge which says filling your heart with love doesn’t leave room for anything else like fear. Easter has put a bit of kybosh on things I know and people have been taking their well earned holidays including the radiologist consultant. I really hope I know by the end of this week.

Today I had a CT scan. It’s been three months already. To say I am dreading the results is an understatement but I have such positive responses from my facebook page. Over a hundred people all wishing me positive thoughts and sending them my way. And I think I feel it too. CT scans are a doddle but today was a more fun experience with a goofy Australian guy jacking me up with the CT contrast... small things that make things seem better eh?

I don’t know when I will get results. I am booked to see Prof Harris on the 13th May but think I may be away again. And surely waiting all that time for results is so unfair! I am also tempted not to go and get my results. I hate it. I don’t really hate anything but I do hate waiting in the waiting room for results. I would rather they sent them to Pete. He can digest the info and find the good in them.

So lots of things potentially going on. I have to admit I am quite tempted to go and have chemo. It’s the only thing that is solid right now. Everything else is flaky. I so want ablation. I want the little buggers blasted..

I keep thinking it has been two months of no treatment. But then I remember I am still having GcMAF after having had a week intense treatment as well as DC therapy from Nesselhut. I hope, with every part of me crossed that I can report back to everyone with a good result... and also a bloody date for ablation!! Please please please don’t the let the canSer have spread out of the lung area. I need this ablation.

The vaccination trial is called IMM-101: Heat killed mycobacterium obuense. I am not quite sure what it is but once I read more on it and Pete explains it to me I will post in detail for you. But let’s just say its immunotherapy and they have been trialling it on advanced pancreatic patients. I should be starting that next week sometime.

Pete is still very keen for me to have more Dc therapy with Nesselhut and I have been contacting them to go back and have a top up. Pete has been dreaming about it and really feels that I need to keep my body fighting fit and this is the way to do that... OK I hear ya loud and clear...

I’ll leave you with some shots of me in NYC...

 

                                           

                                            

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