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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

Don't worry you'll get to the top soon!

by Claire2. March 2014 19:50

 

Today the weather has been lovely. So we took a drive Neuchatel, a beautiful chocolate box town that resides by Switzerland’s third largest lake. We were equipped in walking clothes and meant business…

The language here is predominantly French so it is hard to remember that we are not in France. Especially when surrounded by boulangeries, patisseries and so on.

The day started with tea and a croissant and we headed up to the local church. Everywhere here is hilly and by the time we ‘climbed’ to the church which has a beautiful view of Neuchatel both of our lungs and hearts were bursting out of our chests. We had to laugh when an old Swiss lady met us near to the top of the steps and said in French, ‘Don’t worry you will get to the top soon!’ Ha ha! We must’ve looked awful.

All I think is its fresh air, great exercise and I get to see the world and spend it with the man of my dreams.

After 2 hours walking by the lake we drove to Morat, an equally divine town bathed in history. Here they had a town oompah band really going for it! I had a little wiggle to it before we left to go ‘home’.

This evening we decided to eat in Lausanne again- boy walking to the Cathedral was such a challenge- my little legs.

Everything is expensive here. Time for bed…

 

 

                         

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Triple Negative

Day one of our trip to Switzerland feeling nervous...

by Claire1. March 2014 20:41

 

The day started with my cat sat on my head licking my forehead. What a wonderful way to wake up! We headed to terminal five and caught our flights, then hire car to the hotel in Bussigny-pres-Lausanne, which will be our home for the next week. Thankfully the hotel is lovely (our room more so now we have a bath!)

I felt really nervous this morning. I’m finding it really hard to contain my feelings despite using breathing exercises. I feel emotional and tired. I’m physically over the sickness bug I’ve had all week and happily eating. We decided to be decadent and eat smoked salmon, drink champagne and do some luxury shopping... that calmed my nerves!

Now we are settled; lap tops set up, Wi-Fi connected and ready to go.

We are going to do a reccy and I think another early night. Tomorrow we are going to investigate the area and enjoy our weekend before the clinic at 9am on Monday.

Au Revoir!

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Triple Negative

Ladies what lunch...

by Claire28. February 2014 19:36

 

Today was a real treat. For a long time I have been in contact with a lovely lady who contacted me through the blog. She is kind and helpful and up until now just hasn’t found time to meet. We don’t live a million miles from each other so for the first time we met over lunch. A friend of friend came too and it was so refreshing to talk openly about canSer. We are all on the same path, slightly different circumstances and stages and canSers but we are the same. We are driven, we are doing similar treatments and going to lengths many others do but thousands don’t. We have all been to see Doctor Nesselhut, are experiencing different drugs and have all had horrible stories to tell about how awful doctors have spoken to us because we don’t conform to their ideas. But then became amazed at results and the extension of life.

I felt inspired to keep trying. I was given advice on my trip to Switzerland for GcMAF and what to expect. It’s very helpful speaking to someone who has already been.

I have been ensured the Professor at GcMAF is great and could even help with looking at my scans. Well that would be nice!

We were gassing for hours before I knew it three hours had passed. How time flies!

Once back I had to get ready to travel to Switzerland. Kitty knows something is up. She plopped herself on my lap for a cuddle. Bless her. Luckily for me Kitty has a kind ‘aunty’ who takes care of her….

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Triple Negative

A few turbulent days in Germany but well worth it..

by Claire26. February 2014 09:50

 It has been a hard few days. We left at the crack of dawn, well earlier actually, to get our flight to Hannover for our flying visit to Duderstadt for treatment with Dr Nesselhut. It was beautiful weather there and everything seemed great. We had good food and even better great company. On walking into our hotel we immediately met a wonderful Australian couple who were so pleased to speak to some English speaking people! Within minutes we had discovered that they were there for cancer treatment also. It was for their 29 year old daughter who has glioblastoma multiforme or GBM. This is a brain tumour that is aggressive and hard to treat and actually life threatening and shortening. Their daughter wasn’t given many months to years to live but defying all odds she is still well and all clear about three years on. This is down to her drive but also her families undenying love and passion to save her life. The father and mother have dedicated their lives to caring for her. Her father, Tony has done everything in his power and super skills at research to find the best possible treatments for her whilst her mother, Lyn has helped with injections and general caring. What a powerhouse. You can feel their love and boy you don’t want to mess with them!

Jenny, their daughter has had some radical surgery amongst some radical treatments but has come out of it well and currently all clear. That is why they were at Dr Nesselhuts' and the Hallwang clinic. Their research continues and the treatment is there to find out what is actually causing the canSer.

We felt honoured to meet and spend time with them. They were genuinely very kind and were sharing so much information. Tony thinks that canSer is caused by either a bacterial or virus within the body. It affects the immune system and hides there. So despite treatments to eliminate the tumour it isn’t curing the cause. And that is what they were on a mission to find out. Jenny has had the RGCC test and is finding that a virus is harbouring in her system. This really does resonate with me.

I certainly believe that our bodies created canSer therefore it should be able to get rid of it. Therefore an antidote or treatment to get to grips with those sneaky canSer cells would be logical.

On Sunday night after a lovely evening with my hubby I woke at 2am. I hadn’t been for treatment yet and was feeling very shaky and sweaty. I felt like I was coming down with the flu yet had terrible upset tummy and sickness. Our thoughts were food poisoning but Pete had eaten the same as me. Whatever it was it made me feel awful for a good few days. I was determined to have treatment but knew that having Newcastle disease virus wouldn’t make me feel much better. So for the last few days I have been a bit of a wreck. I haven’t been able to stomach anything other than green tea and water. (And even the green tea I think was causing me issues.)

Yesterday we met with DR Nesselhut Senior. He is simply such a lovely guy. He always seems so positive and explained that the vaccination I was having was quite a risky one. Now they tell me! Apparently research shows that the antibodies they were using in a larger dose caused 20% remission, 40% stable disease and 40% death! Oh joy... Pete and I looked at each other- telepathically thinking we have time to get up and run! He also explained that in that dosage the cost was 100,000 Euros. But then the Doc explained that in such a small dose the cost was clearly far less and the response would be completely different... they hope!

I didn’t run and I am still here currently fine...

We were advised when speaking to Dr Hembry last week that we shold mention ‘antisense’ to Dr Nesselhut. Not really knowing much about it we did. Here is a link to general terms of what it is; http://en.wikipedia.org/wiki/Antisense_therapy

He said that he didn’t believe that breast canSer was caused by a virus but more by a bacterial infection that goes in through the nipple. I guess that makes sense. But we all know that triple negative seems to be tricky and nothing is really the norm when it comes to TNBC.  That said I had my blood taken to have a range of blood tests to see if I have any virus harbouring inside my body. No doubt it will be pricey but it would be interesting to know what is happening inside of me.

We travelled to the airport and made our way home. I long for home when I feel poorly. My bed was calling me and after a (bad) night’s sleep I do actually feel better. I don’t have cramps any more but do feel a bit light headed. I don’t think I will be exercising today but I do want to start eating.

There is much to be done, especially for Pete. He is trying so hard to run his business successfully and raise enough funds for treatments. But it is all worthwhile. As long as I can stay well and have options ahead of me then its great news.

Dr Nesselhut gave us an analogy of the different kinds of input we as ‘incurable’ canSer patients are give from ‘regular’ doctors. A man wants to climb a mountain. At the bottom the guide says, ‘You won’t make it. Don’t risk it’. The man climbs and gets half way to a hut for a drink. The bar man says, ‘You won’t make it to the summit, you will never do it’.

But, what if the guide at the bottom says, ‘You can do this, you can make it to the top.’ Then at the hut, the bar man says, ‘you’re halfway, you can reach the summit, keep going!’

Dr Nesselhut became very animated and was very passionate about it. Bless him. We understood loud and clear what he wants us to do. I won’t give up. I just cope better when I’m not feeling yucky from a stomach upset!

All in all it was a very successful trip and the highlight was meeting our new friends. We hope to see them again someday with hopefully amazing news.

                                           
                                                Out for a lovely walk in Duderstadt.

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Bangers to cancer...Controversial or not it's raising awareness!

by Claire22. February 2014 16:24

I felt compelled to share something with you and perhaps have a little rant...

The other evening one of my lovely clients who follows my Facebook page and blog contacted me with a gorgeous picture of herself shown below and sent me this message;

‘Hiya Claire! I hope your keeping well!! I just thought I would let you know that us Cornish girls are doing bangers to breast cancer (wearing a bra with a sign of how to donate then nominating three other girls to do the same) and mine is for you in mind!! I think you’re so brave and a massive inspiration to me!! I really admire you!! So far the girls have raised just over £2,500!’  

 

                                               

I posted the image online and thought what a lovely idea and great way of raising funds. As for Michelle I didn’t know her background but it started as a rumour that it was in response to the silly craze that had started known as neck nominate where an individual downs a drink and then nominates friends to do the same. Michelle and her friend Vicky decided that they ‘could carry on this idea of "Neck Nominating" and put it to some good.’ As soon as the newspapers got hold of this they named it ‘Nip Nominate’. Let’s not take away the good will that these girls have tried to emulate.

Since then I have noticed newspaper articles spreading the word and sadly also slating the girls for sexualising breasts and belittling canSer.

Here are two articles from well known newspapers;

http://www.mirror.co.uk/news/nipnominate-boobs-pictures-neknominate-craze-3166346

 

http://www.theguardian.com/commentisfree/2014/feb/21/breast-cancer-nipnominate-pictures-bras-beth-whaanga

Someone raised the article above on my Facebook page and this was my response;

‘The main point from Daisy the Journo being supported by the phrase "If I had a mastectomy". She hasn't I have and once again, the focus is on appearance not life and love. Sadly she has missed the point that the physical may be enabling the message to spread but behind that and what really gives canSer suffers strength and for whatever motive that may be, is another lady showing love. Someone doing something to show that they care and if that raises awareness and especially if that support a clinicians research by attracting donations then "As I have had a mastectomy" and more importantly am still loving life and working for my miracle then this support does not "belittle" it warms and motivates me. Maybe Daisy should have asked rather than writing vicariously and maybe she would have known that some of the ladies in those pictures are personal friends of mine putting social networking to good use. Light and love x

 

There have even been posts of people stating that it is offensive to those who have had breast canSer and mastectomies.

Really?

Who would be offended by this? And why? The girls have started a great viral campaign. No matter what I think or anyone else thinks controversy means it is getting noticed and if that raises awareness and funds for breast cancer charities then who cares, right?

So far the campaign has risen over £4000 on the girl’s just giving page. This is incredible and they want to raise £50,000. That’s simply by girls donating just a few pounds and getting other women and men to do the same. You don’t have to wear only a bra and expose your breasts. It quite clearly states on their page the following;

‘Take a pic, if you’re a bit shy put your BRA on over a T shirt (Male or Female), post it on Facebook and nominate 3 others or more; some have started asking everybody they know on Facebook. Don't forget to donate.**** Also from now on can you please hold up a card with whatever message you want and no SWEARING please also no under16's unless the BRA is on over some clothes***  Lets keep it sensible please. Raising money is what this is all about.’

I want to take a moment though to those of you that do find Bangers to Cancer offensive. How is this different to such charity initiatives as the Breakfast TV presenter Lorraine Kelly when she does the Moonwalk and every person wears only their bras? I don’t think that is sexualising the matter. However everyone is entitled to their own opinion.

Whichever way you look at it, it has got us talking about it, arguing about it, having strong feelings about it and most of all, raising awareness and funds for it.

Well done ladies and keep up the good work!

To donate and continue their campaign please go to their Just Giving page and start posting and sharing on Facebook.

http://www.justgiving.com/Bangerstocancer

or


Text: 'VMAM66 £2' to '70070' to donate two pounds to Bangers to Cancer

Thanks!

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Triple Negative

Back to Bristol for blood taking...

by Claire21. February 2014 20:19

 

A trip to Bristol for my mum and me again today would have been worry free had we not been woken at 4am with the sound of lorries hurling up our road. The noise was nothing we’d ever heard. It sounded like they were crashing through our house. Once awake we found out what had happened. The A34 had been closed both directions at 3am due to a road accident. Bizarrely enough police had stopped to clear a dead badger and a car collided with a lorry and someone had died sadly.

That was a bizarre way to start our day and our plans of getting up leisurely and making our way to Bristol were dashed. All traffic diverts past my house in our little village making it almost impossible to get to the A34 on our journey. We left with plenty of time to make it to Bristol back to the practise where I had been on Wednesday, this time to have blood taken in preparation for the RGCC testing.  I know it seems extreme to drive an hour and half (in good traffic) but that’s what you do when your life depends on it. Let’s face it, that’s nothing to the distances we travel for treatment usually.

I rang Dr Nesselhut this morning and he confirmed that the lab says my cells look good and we are to travel to their clinic for Monday’s appointment. Right, all systems go. I need to confirm flights and get a car booked. Tomorrow morning I will check in online and pack my clothes for our fleeting trip to Germany.

So how do I feel? Great, actually. I always feel better having a plan but I still feel anxious at a drop of a hat. Last night for no apparent reason I felt uneasy and unsettled before I went to sleep. I think beneath the surface I am worrying still. I guess I have to remind myself of the recent scan results. I would love to be completely ignorant and just think to myself how good I feel and that everything is fine. But then I guess it is really. I am definitely ‘fuller’ than usual and I wonder if I will continue to ‘fill’ up the more I deal with stuff. It doesn’t get any easier.  You just learn to deal with it somehow.

My hubby is absolutely wrecked from working so hard this week. Lack of sleep doesn’t help either... He is home now and the weekend begins... Not much sleep for us though as we will be up at 4am to get to the airport Sunday morning. Life goes on and we do what we can... but we try to make it fun along the way. We are having a yummy Indian meal tonight and watching international rugby with mum. It’s our last night together for a month.

Despite everything I love my life....Cool

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Triple Negative

Food for thought!

by Claire20. February 2014 18:31

 This week I decided I would find some recipes with certain ingredients in mind. There are so many super foods and having a cupboard full of wonder herbs and powders I thought it was about time I actually tried using them. I am not a natural cook and with a little help from my mum we made simple things that I can pick at. This isn’t all for me. I am trying to convert people (maybe someone beginning with P) from eating processed sugars as much as possible. There are so many better alternatives. So we whipped up almond butter and lucuma cacao cups and cinnamon apple crisps. The more I try and cut out sweet things the more I want them. So I figure make them as healthy as possible then I can have a pick here and there. Yesterday we made my mums famous Dorset apple cake but with alternatives to the usual ingredients. We exchanged the flour for a gluten free version, goats butter, almond milk and coconut palm sugar. It may not look amazing but it tasted really good!

                                              

I now want to make some alternatives for breakfast and will be attempting to make buckwheat granola with goji berries, dried coconut, and other little gems. For dessert I have made cacao coconut and vanilla chia seed pudding. It can be eaten cold or warm and is so filling and full of protein.

My repertoire is expanding and I am becoming slightly more adventurous. The problem is now I have a kitchen full of goodies! Eek!

I’m off to have the RGCC blood test tomorrow and I don’t want to be caught hungry so will be taking goodies in the car to keep mum and I going.  A kind of car picnic... yummy.

 

                                          

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