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You never know what tomorrow may bring...

by Claire17. March 2014 17:30

 The weekend was unexpectedly great. I knew we had a fun time ahead as our friends were coming to visit but sometimes it’s great to having any expectations and it turning out lovely.

It always surprises me that you never know what tomorrow may bring. The weather was gorgeous and we had plenty of time revelling in our back garden. Friends arrived and cooked us a tasty Chinese meal, then sang round the chiminea until about midnight. (Sorry neighbours!) It was so relaxing and probably one of the most memorable evenings in ages.

 

                                          

                                 

I had no particular plans for Sunday. Once our friends left all I thought was that it would be really nice to relax reading in the sun, hang out washing in the fresh air and take it all in. Pete had other plans and off we went to a big DIY store apparently to look at prices. We came home with a power jet wash and got to assembling it and then ‘trying’ it out. Oh my god... it is so satisfying watching each every patio slab and decking plank change from grotty black to bright natural sand and brown colour! Once I started there was no stopping me and by the end of the day I had completed the job. This had been on my list of to-dos for ages and I didn’t really ever expect to achieve especially I had no idea we would buy some decent kit to complete the job.

I felt a natural high and I can’t stop looking outside at the wonderful results... How funny that something so mundane to most seems so exciting to me!

But it all comes down to not knowing what each day brings and keeping an open mind and going with the flow.

I spoke to my friend yesterday who has been to see Professor Stebbing, a triple negative specialist in London. I have been recommended to him over a year ago but never went to see him. I recently felt the urge to get an appointment but hadn’t had any reply. As usual I thought this was just how it is as all other doctors don’t usually reply at any great pace or I get ignored completely.

Spurred on by my friend I made the decision to email him on a Sunday never expecting to get a reply. I did and his PA emailed me too. I have finally got an appointment. Yay!

 I felt quite excited by it as I have been told he is very committed and caring. He believes that secondary cancer will be classed as chronic disease within two years. Well I best stay alive another two years at least then!

A delivery of books arrived at the weekend also and I started reading about having a charmed life. It’s a bit like, once you start looking for the positives and the little miracles, they start coming all the time. I guess that kind of happened this weekend in more ways than one. The more you look for them there they are. It has really perked me up and I feel like I am living much more in the present. I am back to feeling like I have drive and less afraid.

However, I still feel a bit unsure about what to do with regards to treatment but in the meantime I am pursuing GcMAF homecare. I have successfully injected myself and today I have used the nebuliser. (Actually feel a little light headed)

But I will proceed with booking for Germany. Saturday morning, the first day of the week that Pete gets a lie in we both strangely wake at 4am. We both got chatting and I felt it was a good time to discuss my worries about what to do treatment wise. We both agree that doing immunotherapy with Doc Nesselhut and then TACE with Prof Vogl is necessary... my reservations are whether I should simply stay here in the UK and have chemo on the NHS. Pete says that we should keep that as a back up and get going with Germany. So I have provisionally booked hotels but not flights yet. I am booked to see Prof Dalgliesh this week and I wonder if he might be able to shed some light, steer me in the right direction or something!

My friend counselled me at the weekend by saying that I should follow my gut. My gut isn’t totally sure at this stage. I think this one will take time to organise but I only have a few weeks. Eek!

All I know is right now at this moment in time I feel good and I have to hang onto these times. I must not take for granted feeling well and symptom free.

                                            

                                 

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Triple Negative

What to do next?....Live a charmed life....

by Claire14. March 2014 15:56

 

Today I feel more inspired. I keep reading and hearing that you are what you think and the law of attraction. I know I am focusing on what to do next, when to do it and if I am doing the right thing all mixed up with emotions of fear. It’s scary, you know, knowing that there is something inside you that is growing, spreading and will kill you given half the chance and all the while you feel perfectly well. I find it hard not to panic and think of the next thing to do. I would like to think that’s me being prepared and being one step ahead of the canSer but in other peoples eyes it can look like I don’t believe the treatment I have had is working and isn’t going to work; such as GcMAF. I am not assuming it didn’t work or isn’t going to work. I just think that it’s going to take What to don nmore than that to stop it. So I guess that is me being negative. The reason is that it’s not just a case of reducing the canSer but actually stopping it in its tracks.

My friend had great news this week that from simply using GcMAF and living a very conscious life involving a ketogenic diet, exercise, infrared sauna, supplements and so on, that the canSer has gone from her lungs and the liver meets have stopped growing. She had faith in what she was doing and didn’t run around looking at other options. She let the time pass and trusted in herself.

A HUGE part of me wants to do that. But I thought I was doing everything right before my scan in January then it really pulled the rug from beneath to be told there had been disease progression and the tumours were that much larger and in my lymph nodes again.  

So here I am being told by Dr Hembry to do something like visit Professor Vogl.

I have heard a lot about him and read intensely on the work he does. He offers TACE (transarterial percutaneous chemoembolisation), TPCE ( transpulmonary chemoembolisation), TACP ( transarterial chemoperfusion). More information here; http://radiologie-uni-frankfurt.de/content/e4864/e27/e35/index_eng.html

Basically from what I can gather through speaking to people that have had it, it’s a way of getting chemotherapy into the tumours directly therefore not flooding the body systemically with chemicals. It can be used in conjunction with other treatments such as thermal ablation, microwave, LITT and radiotherapy.

I have been informed that I can have an appointment to have this done in the next couple of weeks.

I already have appointments to see Doc Nesselhut for my next round of immunotherapy at the same time and possibly to treat the EBV virus but I was thinking that maybe this could be more important to really get to grips with shrinking the tumours. It wouldn’t be one treatment either. It would be up to four visits. Last night I was sure that this is what I should do. I know I haven’t had anything to stop the canSer since the chemo I have been having has had no or little effect. And knowing that the canSer is very active I feel like I should do something.

But then it comes back to, am I letting this take control of me? Should I be thinking canSer doesn’t define me and therefore slow down a bit and just live and trust the Universe and myself, let GcMAF work for a while and then see. If I have chemotherapy then the GcMAF really won’t work.

I am concerned as I have a CT scan booked at the end of April and would be due to start chemotherapy again. If I wait till then am I really taking a huge risk of the disease getting out of control?

Another thing is that Prof Vogls' treatments will cost (clearly) and I could have free treatment on the NHS providing me with chemotherapy. I am shying away from chemotherapy on the NHS because it means it will attack my whole body, I’ll lose my hair (again) and so on... You know the rest.

 

I would really love someone else's opinion on this. I hope to see Prof Dalgliesh next week. But anyone can give me their thoughts!? I’m open to suggestions. This is something I really need to consider. Whilst studying this week’s module on the health counselling course I listened to a great lecture by Victoria Moran who talks about creating a charmed life. It was brilliant and funny and she focuses on what you attract into your life. It couldn’t have been more apt really. I completely understand that if you are negative then negative things happen and vice versa. It has inspired me to do more of what I want in my life and try to attract the right things for me. I so want to be happy and carefree. I know, possibly, this won’t happen but I can try.

 

On a completely separate matter I have been taking naltrexone for over a year and have had it provided in Germany at a cost (again) and found out that it is possible to get here in the UK.  What a revelation! I contacted the LDN Research Trust, who asked my details. I sent them proof of my illness and then a doctor called me. He took payment for only £35; this included the consultation and three month supply. This is vastly cheaper than what I have been paying. Now I am waiting for a prescription to arrive and on I go. They advise how to take and when. It’s as simple as that. It’s so nice to finally do something without a hassle. If you are interested here is the website for more information; http://www.ldnresearchtrust.org/

 

I had a reply from Doc Nesselhut with regards to the immunostat test that worried me as it said the immune system was deactivated. His reply was along the lines of;

‘In this case deactivation of the humoral immunity (TH2) is irrelevant. Deactivation of the suppressor immunity (TH3) is favourable. And deactivation of cell mediated immunity (TH1) is to be expected in cancer patients. Thus, cell mediated immunity is what we aim to enhance with dendritic cell therapy.’

 

So that’s that then... none the wiser but it sounds ok to me.... I think?!*

 

I have finished working for the week, have cleaned the fridge (on request of the MD) and think maybe I should try and listen to Mark Newey’s hypnotherapy CD he created for me.

 

I had a chat with Laura Bond yesterday and she has really been helping me get clarity on a few things in my life (Not making decisions on treatments sadly). She suggested reading a book called, ‘E Squared: Nine Do-It-Yourself Energy Experiments That Prove Your Thoughts Create Your Reality’ by Pam Grout.

So I mentioned to my hubby that I fancied reading it as well as Victoria Moran’s ‘Living a Charmed Life’. He only goes and buys them for me...Yay!

 

Happy Friday everyone. X

 

 

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Triple Negative

Dr Hembry gave me the results...

by Claire13. March 2014 14:06

 In my last blog I was just about to pick up the phone to Dr Nicola Hembry. She is a lovely lady and makes me feel very calm. We discussed the results of the RGCC test in detail. The first thing she noticed was the circulating canSer cell levels. Mine were (14.2/7.5ml, SD+/-0.3 cells). Apparently the level should be below 5 and mine is 14.2 indicating the canSer is active and progressive. My aim is to get it below 5. This alarmed me somewhat and I felt my heart sink.

The tests showed the sensitivity to different chemotherapies. Anything above 80% was worth using and classed as more effective. Unsurprisingly Vinorelbine, that I have been on for the last three months only came in at 65%. Capecitabine, the drug I was on for almost a year and was actually quite successful shows to be 75% effective.

The drugs that showed up as most effective are; Gemcetibine 82%, Cisplatin 80%, Carboplatin 82%, Ixabepilone 83% and Eribulin 82%. This information pleased me as I haven’t yet tried these drugs and Eribulin, one I had never heard of until I was recommended by the oncologist at my last scan results appointment. This gives me some hope that there are other effective treatments available to me. Avastin showed only a very small benefit. Two others that I am not sure are available for breast canSer are Erlotinib and Everolimus.

Ixabepilone brand name is called Ixempra and researching seems is the last line of chemotherapies offered for advanced breast canSer.

The results also showed genes that were up regulated and down regulated. The EGF (epidermal growth factor) gene is shown to be 45% over control. This is common in triple negative breast cancer.

Interestingly the genetic profile genes related to heat shock proteins all showed that they were between 30 and 45% below control. This is a good thing as this means this shows it responds well to heat treatments such as radiofrequency ablation, radiotherapy and hyperthermia treatments.

There were other genes such as the metastases regulators that are out of control which increases the risk of the canSer moving around.

Moving onto the complementary test results.

Most surprisingly enough to Dr Hembry was the lack of sensitivity to Ascorbic acid (Vitamin C) She said in nearly ten years there has been only one other person who cannot have vitamin C in order to help reduce the tumours. Why am I not surprised?

However the results showed that the following things do have greater sensitivity;

Lycopene (present in tomatoes)
Super Artemisinin
B17 (laetrile)
Ukrain (whatever this is?)
Bio D Mulsion NuMEdica Micellized D3(vitamind3),
Genistein,
Artecin,
Salicicnium,
Fucoidan (seaweed)
Aloe Extract
PME (Polymannan Extract)
Naltrexone
Paw Paw
Quercetin ( found in onions and apples)

And less sensitive in;
Cruciferous complete
OPC
Fermented Soy extract
DCA (dichloroactetate)
Metformin
Mistletoe
Melatonin
Resveratrol
Indol 3 carbinol
Salvestrol
Curcumin
and many others that I have no idea what they are!

Well this is a turn up for the books. I am surprised at Curcumin. In fact that didn't come back as a complete loss like the others but isn’t sufficiently effective against canSer. This doesn’t mean I will stop taking it. It is still an anti inflammatory and really good for the system.

Mistletoe also was only tested on specific form and I was advised there are many others that could be beneficial still.

As well as this I had a test called Immunostat that shows immunity activation/suppression.

Strangely enough it showed that there is a deactivation of immunity. Of course this is not great considering I have had immunotherapy. Unfortunately Dr Hembry couldn’t really give me advice on this as she didn’t really understand it as she hadn’t done this test before so I have sent it to Doc Nesselhut to give me a heads up. I hope it doesn’t mean that the immunotherapy hasn’t been working.  I await his reply.

Also today I received a test that I did when I was with Doc Nesselhut last, to establish if I had any viruses. This is on the thoughts that maybe there is an underlying virus and that could be stopping my body from repairing itself. Our Australian friend had said that he thought people with TNBC carried the Epstein Barr Virus.
Doc Nesselhut thought breast canSers were caused initially by bacterial infections through the nipple. Well... the results showed that I do have the Epstein Barr Virus! On researching it is something that can be underlying in many people for years with no symptoms. Nothing to be worried about massively but Doc Nesselhut has said he can treat me for it with an infusion. I would like to know more information on it in due course. 

Epstein-Barr virus is in the herpes family of viruses and most people will become infected with EBV sometimes during their lives.  

What causes Epstein Barr Virus?
Infectious mononucleosis, or "mono," is a contagious viral illness that initially attacks the lymph nodes in the neck and throat. When these tissues become less effective in fighting infection, sore throats, swelling of the nodes and fever may result.

Mono is caused by the Epstein-Barr virus, which is named after the scientists who first identified it in the mid-1960s. The virus enters the lymph nodes and attacks the lymphocytes (the white blood cells manufactured there). As the white blood cells come into contact with the virus, they change shape and multiply. At first, there are no symptoms because it takes several weeks before enough of the altered cells can accumulate to generate infection.

If the virus lasts more than six months, it is frequently called chronic EBV infection. Some doctors think EBV is the cause of a chronic condition called Chronic Fatigue Syndrome (CFS), although this has not been definitively proven.

Mononucleosis spreads by contact with moisture from the mouth and throat of a person who is infected with the virus. Kissing, sharing drinking glasses, eating utensils, and toothbrushes, or touching anything that has been near the mouth of an infected person, may result in transmission of the disease.

All in all a real eye opener and I can’t decide if it actually made me feel worse or better?

Bearing in mind this test was done the week after chemo and before my last immunotherapy visit and GcMAF visit.

 

With regards to GcMAF I have now had a report, as such, and have been advised how to take it at home. I require a nebuliser and syringes to treat myself. So I have ordered them from the internet and will start treating myself as soon as they arrive.

It is difficult to tell if GcMAF is working and will have to wait until I have a CT scan.  Even though I had the treatment last week and have more to have at home I still feel worried, especially now I have the blood test results. I am hugely aware that the canSer has been growing especially since I haven’t really had any effective chemotherapy in the last three months. I feel like I am against time and sometimes that I don’t have many options.

I have to admit yesterday was a bad day. I felt very down and worried about all this. I have no idea what is working and speaking to Dr Hembry, she will send me a list of treatments and supplements that I could do with the complementary options but this isn’t going to stop the canSer. It will probably just support my system. She said, ‘If I was advising a family member I would suggest getting some form of treatment perhaps using the chemotherapies that looked promising on the results. We then discussed visiting Professor Vogl in Frankfurt.... So that is where I am now... emailing Professor Vogl and getting something started before the end of April when I have booked to start chemo on the NHS. Of course I am reluctant to do this but will if it means it stops this from progressing. I am feeling better today and more positive about it all.

More on the treatment offered with Professor Vogl next time....

 

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Triple Negative

Back home.....Waiting for a call from Dr Hembry...

by Claire11. March 2014 19:24

 

Our last day in Switzerland was spent in Geneva. It is so beautiful and classy with lots of expensive shops. Lucky we didn’t go there sooner and have more time! Pete’s credit card may have taken a hit.

We got to the airport with loads of time and I was happy as usual to be going home. My own bed was calling me!

Sunday was just wonderful. For the first time in ages we had a sunny warm day here and I relished putting my washing out the line. (Sad I know...) But it’s the small things that make me happiest.

I have put the GcMAF I was given in the freezer and await instructions of when and what to do with it in the future. It is now Tuesday and I suspect they have been pretty busy at the clinic in with new attendees and finishing off with those that stayed over the weekend. I hate waiting (if you didn’t know that already!) and am eager to know what to do next....

Yesterday I had to catch up with clients that desperately needed some TLC and mostly their eyebrows tamed. I had to start the day with my rituals and catch up on homework as I am lagging behind the health coaching course. It’s amazing how much one can get done in a day. Ten clients later and finishing at 7.15pm Pete and I did a short stint of yoga to wind down before our evening meal...

Before I went to Switzerland I visited Dr Hembry and had blood taken for blood tests to show what my circulating cancer cells are sensitive to with things such as chemotherapy, complementary treatments and medicines and so on. It takes a while but I have just had the results. Looking at them it is gobbledygook. I am currently sitting waiting to speak with Dr Hembry so she can decipher them. On the first look there are some surprising results. It lists chemotherapies and how sensitive in percent. The first thing that caught my eye is Eribulin, which is the chemo the docs want me to go on next is 85%. It’s one of the highest on there. Capecitabine which we know was quite successful for about a year was only 75%.

I will wait till I have spoken fully to the doc then give a proper summary. I hope also to find out what my next move should be if any.

On returning I had a pile of post and in it was an appointment for another ct scan for yesterday. I called and found out that they wanted to get a baseline before I started chemo, which was due to start today. I have postponed it until the end of April or thereabouts. I want to go down different avenues before I leap into systemic chemotherapy again. Well at least wait and find out about the blood test results and what my options are.

As we speak the phone is ringing and it is Dr Hembry... so tomorrow I will give a huge update as to what happens next for me. Dun Dun Derrrrrr..... Dramatic enough? Ha ha!

                                 

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Triple Negative

Day five...Taken up the Eiger.. Ooer Mrs!

by Claire7. March 2014 21:20

 Sleep! Last night I had an amazing sleep. But that was after having pain in my heart/chest. I’ve noticed the last two nights my heart racing. I am putting it down to having the amino acids that were prescribed by the clinic. They do advise not to have them close to bedtime. I took my last dose at 6pm. That’s hold be plenty of time. A little worrying but thankfully must have calmed down as I had one of the best nights since I got here.

My appointment went well. I think. I had my next round of treatment then I was scanned by the German doctor there. They feel the blood supply in my spleen looked really good therefore indicating the macrophages were doing their work. They weighed me and took all my measurements like the beginning of the week to see if my muscle mass had improved. No. In fact my weight changed three times on the scales in 30 seconds. I have in fact out on weight, lost muscle mass and increased my BMI. This doesn’t bode well. I am taking 30 amino acids a day... how is that possible? I am not sure that the scales were right.  My scans will be seen by Prof Marco and he will be sending me a report of how he feels things went and what to do next.

This afternoon Pete had a little surprise for me. We drove for about two hours into the mountains and we ended up in Grindelwald where many films have been made but

most importantly it is a ski destination. The sun was shining the mountains looked stunning too. Pete had been talking about taking me to the Eiger all week. The Eiger is featured in movies too. We had a blissful afternoon sunning ourselves and walking in the mountain air.

                                   

On the way home we stopped by the most amazing lake where there was a diving board to swim in it. Tempting but maybe a bit cold at this stage of the year.

We got home and had a little picnic in our room. Thank goodness for Aldi! Ha ha!

                  

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Triple Negative

Blog By Bear for all the other Bears....

by Claire7. March 2014 07:28

 

So Claire is having her treatments and I thought I would write a Blog for all the Bears. This is fraught with issues however. What analogy fits best? I first thought Head Coach but the more I ponder it the more I think Colonel is the way to go.

 

So when Claire had her first diagnosis this was nothing more than a small uprising. I read up and it seems that this was very treatable, the doctors were very confident and on advice it seemed that the standard treatment would work to put this uprising down and we could get on with life.

 

If you are at this stage then please stop right now and realise that, the doctors aren’t always right are sometimes over confident and start acting now like we all have at stage 2.

 

Stage 2 is about 6 months later and comes with a terminal diagnosis, all of a sudden this local issue has gone global and you are engaged in a full scale war, with no Geneva Convention, no prisoners and an attrition rate that makes a Battalion in Afghanistan look safe as houses.

 

So what does a good Colonel do? Well like me you probably started with knowledge. Lots of knowledge and mine created the 10 point plan, that we still live by today. Then you gathered your staff officers around you. Mine are incredible. Our friends and family go through hell with us and then come back for more, they are our strength and motivation and we could not love them more dearly or be more grateful for their support.

 

Next comes the Battle plan and for this we need strong allies.

 

Veteran troops who have been fighting this battle for years, with traditional methods, but also new recruits, who are fellow soldiers with exciting and innovative ideas. These are the special forces, at the very edge of this fight and to support them we have “Q”, the scientists and physicians we have met who with passion and dedication have stepped outside of convention to search heart and soul for a cure.

 

As Colonel in charge you then have responsibility to make this work. How many times do you hear, “we can’t give a cure, this is about living with canSer and dying of old age, not a cure”? Well maybe this is true but the aim is to win, so let’s keep that vision in mind and settle for long term survival. The reinforcements are coming – I can see advancements every day and the awareness is getting stronger. This is an unstoppable force if we all fight together.

 

So how does our role differ from the loved one we support (not much I hear you say) but to me there are two huge challenges.

 

The first is to preserve normality. From day 1 we both decided that we would acknowledge canSer but not give it the respect to dominate our lives. We have lived to this and try in every way to be “normal” (not easy for us) but then you have the big “abnormalities”.

 

Waiting on a scan result, effects of a new chemo, trips for treatment abroad. This is almost insurmountable and like me you probably approach them with dread and determination. Dread at what is outside of your control and determination to action that which is. This is our job, to make the best platform for our loved one to be healthy and happy and that means “normal”. I remember asking Claire, “Where in the world would you like to go, what would you like to see and do?” when we were faced with mortality and her reply, “ I love it at home being loved and in my safe place”. If you can maintain normality when all about you is falling apart then you are succeeding and should be proud of all you do. I am still trying!

 

So what’s the second thing? Well to me its support. It has to be real and has to be from the heart. There are two types and both scare me (I know the little phrases about worry but I just can’t control these), emotional and physical.

 

When you are faced with THAT question, “It’s all going to be Ok isn’t it?”, then you had better be 200% certain in your head, have all the facts and know the theory because the answer is the world to your loved one. Knowing where we go from here – That’s the Colonels job and hopefully sites like Claire’s are huge support in that. Having the right allies also helps – I’m here if you need me just pop onto the forum page.

 

Then the physical support. Fighting this war is not cheap and the fear is that funds will run out. Well perhaps it’s not resources but resourcefulness and I am going to dedicate my life from now to ensure that all treatments are available to everyone – if anyone can or wants to help with this, let’s talk. Nothing can stop a determined group of motivated individuals let’s do this together.

 

Who knows guys maybe we’ll get a promotion to General – love to all your brave soldiers’ xx

 

I will blog soon about my feelings on the different treatments we have been having.

 

 

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Triple Negative

Day Four..

by Claire6. March 2014 21:09

 

After a weird nights sleep (I think I took too many amino acids too close to bedtime) we got up early to train in the gym. I always feel so much better for making the effort.

I then go to the clinic early as we were having a lecture on foods.

To begin we were given the lowdown on how GcMAF works. It was really enlightening and informative.

Food then began to flow and weirdly enough red wine! At 9am in the morning? Anyway it was a nice time chatting with the other attendees. I noticed we all looked really bright and well. On chatting I find they have been asked to stay until Monday although not all are told they will be treated and certainly none were told they would be given the full treatment.

I am now not sure if I shold stay until Monday. All that extra cost for no extra treatment?!

I then find out a lady who takes naltrexone like I do but was advised to stop prior to starting GcMAF. I have not been advised to do this. Is this an oversight or different treatment?

I don’t want to feel anything but positivity about this treatment and I am very happy with the people here but feel there are missing elements. Should the Prof be here every day?

This afternoon Pete and I decided to head into Lausanne, after a short stroll we met some of the other attendees down by the port.

It was such a beautiful afternoon. Afternoon went into evening and we enjoyed an evening meal together...

Great day.

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Triple Negative

GcMAF Day 3... Wonderful day in Montreux

by Claire5. March 2014 21:01

 

I checked my email frit thing this morning and noticed a message from a friend of a friend who is here in Switzerland having GcMAF!

I quickly replied and planned to meet her. Wow! How small is this world?

I had an early appointment today and it was nice to get it out of the way. They scanned my spleen to see the activity and increase in blood supply. They believe this shows a good response for the macrophages. My spleen has had an increase in blood supply- so that’s positive.  If only there was a way of knowing if it’s slowing or stopping the tumours in my lungs?

The rest of the day has been bliss. We spent the afternoon walking in Montreux along Lake Geneva to Chateau du Challon to Freddie Mercury’s statue, up to the old town, fluffed a cat called Jambo and bought some new shoes! Whoop!

                                  

We then met a friend of a friend. It’s so lovely meeting new people and very enlightening comparing our treatment experiences.

The thing I keep noticing is how well all these people are. It keeps me hopeful but I also think how many of us are out there doing the same?

I’ve really had an awesome day with my hubby ...

..Cos I’m happy. (Clap along if you feel like a room without a roof.... Fa la la)

 

                         

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Triple Negative

Day two...

by Claire4. March 2014 20:47

 

We started the day in the gym this morning. Pete was helping me do exercises to open my chest so I can breathe more- taking in more GcMAF using the nebuliser.

My appointment wasn’t until the afternoon so we spent the day doing homework and Pete skyped with the office. It’s amazing how comfortable we felt. Pete walked me to the clinic but left to continue his work.

Treatment was fine again – not much to report really.

We hopped into the car and to Ouchy, the place where the Olympic movement was founded. Great name for it! We had a quick wander round the museum before settling for an early meal.

An early night for us. I had an Epsom salts bath then hopped into bed...

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Triple Negative

Triple Negative Breast Cancer day and the first day of GcMAF...

by Claire3. March 2014 20:05

 

Today is Triple Negative Breast Cancer Awareness day…

And the first day of GcMAF.

We spent the morning in our hotel room. Pete has set up his Swiss office of his business right here in our room. A lot has been happening here…

I have done yoga, sorted emails, done a sketch and started reading. It’s all the things I wish I get time for at home but never find the time.

At 2pm we went to the ‘clinic’ which is more of a stately home. We were met by lovely staff that made us feel really welcome. We met Prof Marco Ruggeiro who is a charming Italian. To being I had a full body ultra sound scan. Both Pete and I held our breaths as we hoped nothing sinister would be found. Our prayers were answers and actually the prof said my internal organs and lymph nodes under my arms looked great. Such a relief!

He couldn’t use sonography to look into my lungs. He wants to read the blood supply in my spleen as well as my pressure to tell if my lungs/ lesions are improving and are taking more macrophages.

I have been asked not to blog about my treatment at GcMAF. So I won’t detail exactly what I have been having. I can only assume it’s because of people comparing their treatments and the treatment is provided individually. The aim of the ‘game’ is to improve and increase macrophages which stimulate the immune system... There are a number of ways GcMAF /goleic acid can be administered; by injection, suppository in the rectum so the treatment works through the lover, by nebuliser and inhaling it into the lungs and eating it in a yoghurt.

Everyone’s treatment is different. I was weighed by a spectacular machine which told me my BMI, how many calories I should eat each day (2384) and it also told me my physical age... 33!Yeha! I’ll take that one.

Marco went into huge detail about keeping well with exercise, diet and supplements. He wants me to put on weight- mainly muscle and has prescribed me amino acids. 30 per day to be exact!

All in all it went well all except them requiring I stay until Monday. They want to treat me over the weekend too and then scan me on Monday. Initially we agreed but on trying to change flights, car hire, car park, hotel and work commitments the total additional charges would be about £2000!

I felt a bit annoyed at this as I had asked before I left if I needed to extend the time I had originally booked. They told me no. I will simply have to go without.

After my treatment the sun had shone and we headed to Lake Geneva to watch the sun set over the French and Swiss Alps... Absolutely stunning…..

                  

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Triple Negative

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