I’m a miracle apparently…..

It’s a rainy day here in the UK today. I actually really like it. It’s refreshing and feels like starting a new and there is so much to be thankful for.

We returned from Frankfurt on Friday night after being offered an earlier flight by BA. Thank you! It was nice to get back just a tiny bit earlier.

We arrived in Frankfurt Thursday night to loud booming music in the streets surrounding our hotel. We asked the reception staff what was going on, who told us it was their street party for that particular area of the city. So off we went investigating and eating the odd bratwurst along the way. It was great fun and certainly made the evening fly by. I was pooped and was looking forward to good a sleep before TACE the next day.

In the recent weeks my ribs on the right side have progressively got worse. It feels like it did about a year and half ago when I had excruciating pain only to be told there was nothing there. I know I have an old fracture but this pain is moving and is causing me real trouble when I move. Sadly exercise has to be put off; even doing yoga is a problem… Boo. I am feeling flabby and unhealthy but at least weight is going on and staying on.

We didn’t hire a car this time so started our day with a twenty minute walk to the hospital. It was particularly busy in Prof Vogls’ waiting room but I didn’t have to wait that long.

I was taken through and had the same scenario as always; MRI then into the procedure room where I was prepped and left to wait for Vogl to arrive. Boy, that man is everywhere and doing everything. I sent him an email the evening before and he replied at 3am! That guy is committed or crazy. I like him. I understand now why his emails are so short and sweet. He always asks how I am and what I’ve been up to as he wanders in getting himself prepped to do the TACE procedure. I wince every time he injects me then makes the incision before inserting the tube that will transport the chemo drugs straight into my lungs. To be honest putting the line in my arm was more painful this time mainly due to students practising on me!

Anyway he asked me again what I had been doing and I said not much….But what he was actually asking is what treatment had I had done since I saw him four weeks ago? I said not a lot just the usual stuff at home and a visit to Dr Nesselhut for vaccine and nivolumab and a small dose of ipilimumab plus infusion of DMSO and amygdalin and Oncothermia…. you know the usual!

He asked if I had surgery on my lung. No… He said, ‘You are a miracle- because the tumour has reduced by about 70% since the last time I saw you.’ He said that he had never seen this before not that quick. Wow! I loved receiving this news! I explained to him that my cough had gone so that would mean the tumour in the hilar node has also responded. He said yes it has gone.

I don’t remember anything much after that because I all I really wanted to do was tell Pete. The three hours recovery dragged somewhat especially as I needed the toilet! Honestly using a bed pan was a nightmare for me. I was willing myself to go. I was desperate for relief but my body wouldn’t allow me to pee!

11896098_10153073986392061_6203737434762283089_n               (The image shows before a month ago and after with the tumour circled in red.)

Whilst lying there I used my mobile and text Pete to tell him the news. Well you can imagine his reply. He was so happy he cried. I love him.

I also asked Prof, ‘Why did my ribs hurt me so much?’ He suggested that there wasn’t anything there relating to canSer but it was in fact fluid accumulating due to how quickly the tumours were reducing therefore causing some collateral damage. He suggested I let it heal on its own. I wish it would hurry up! I would love to do some cartwheels in celebration. It didn’t stop me from doing a little celebration dance in my usual style though- pain or not!

So we came home with our minds reeling… I am thrilled to know the combination of treatments are actually working and I always knew combining treatments was the way to go. I reckon Nesselhuts treatments are really working alongside the TACE and let’s not forget all the stuff I do at home. Looks like there may be a way to keep metastatic triple negative breast cancer at bay.

Whilst waiting to see Vogl before I left, my friend Peter Trayhurn arrived for his 31st session of TACE! His blog is well known and he has been battling on, proving doctors wrong for five years now; an Australian trying to succeed away from his family. Well as usual he had lots to say but before I left I told him that Prof Vogl thought I was a miracle. On reading his blog this morning it seems Vogl was having a great day as he also told Peter that he too was a miracle as he had no tumours present in his lungs…. so the happiness continues. I feel chuffed for him.

Now we don’t stop. We don’t become complacent and we know something we are doing is right… The fight is just getting started and I reckon we might just beat it and not just keep it bay.

Light and Love. X

 

 

A post by Bear….

Hello, its Bear, just a picture of me too so that you know its me. Peter

I wanted to talk to all the friends and family. Living with canSer takes a lot of adjustment and understanding and from all of the brave ladies that I talk too, something becomes very clear. Firstly they are all the loveliest, loyal  people I have ever met, but also that when faced with death they hold on tightly. 

 

They hold onto family, to friends , to favourite foods, to places and in the case of Claire to her beloved “bawsquit” (that’s a bed by the way) and teddy bears. I have see this time and again and its just like gripping onto sand, the harder you squeeze the more seems to run out. Husbands, boyfriends and above all friends. 

Obviously we are all going to die, but that’s not front and centre in peoples thinking and I even understand, that it my be to much to have that image before you, when all you want to think about is life. Then add onto that the change in character, especially with brain mets. Passionate to the extreme, easily hurt, as disloyalty is expected and actively sought. A lot of people can’t cope with this kind of intensity and love. 

But you should know this, one day that will be you. Hopefully old and in your own bed. You will need love and you will be heartbroken if you are disrespected, deceived or worse lied to. So if you cant cope then please just leave kindly and don’t hurt someone when they are so vulnerable, because when you do you become part of death not life. 

To everyone out there who is feeling alone and for whom fear and darkness are becoming to much, know that we are here, that we love you and that a simple message can bring you love, truth and the understanding you need to know that life just “is” and you have made it a beautiful part of your journey.

Supplements.. It’s a minefield

There are many supplements that I have taken over the last three years since I was diagnosed with incurable canSer. It is a minefield but as you can see from my website I have listed the ones that I feel are beneficial and have added their benefits.

The thing is I wrote that three years ago and have added to it over the years but I now need to update it it yet again.

I would suggest going with your gut when choosing what is best for you.

I still personally have issues trying to know which is best to take. I don’t want to take hundreds of pills daily as it is physically hard to keep them down, it’s hard to know if they are doing anything for me and also the cost involved. Buying supplements are not cheap. I also believe that changing things is good for the body. It keeps it guessing and the body doesn’t become complacent.

Therefore I am always open to what others recommend, especially when they have experienced success.

Below is a list of what I currently take;

Calcium with vitamin D: This was prescribed for me because I inject myself with denosumab, to help my bones stay canSer free. Denosumab can draw the calcium out of my bones which is why I take a supplement.

Immune impulse- a liquid supplement for improving my immunity in my gut.

Bromelain & Curcumin: Both anti inflammatory

Essential parent oils- Contains omega 3,6 and 9

Quercetin- found in onions and garlic. Based on my RGCC blodd test this is meant to be very helpful for meas is artemesinin, lycopene and liposomal vitamin C.

Rose hip extract
AHCC- Boost immunity
Green Tea Extract
Super R Lipoic
Selenium

I also take a range of mushroom products such as reishi oil, cordyceps and coriolus. They are all known to help with working alongside chemotherapy to keep bloods supported.
As well as the supplements I also take some drugs that are known for their uses for other illnesses but research has shown that they are cheap and can benefit and assist canSer patients.

Aspirin- low dose to keep blood thinner.
Cimetidin- a drug used like an antacid.
Metformin- Used for diabetics- for me to keep blood sugars low
Atorvastatin- Controls fats by lowering chloresterol.
Mebendazole- Used for worms but is apparently clever and targets canSer cells.
All of the above drugs except aspirin were recommended to me by the Care Oncology Clinic in Harley Street, London. I initially bought them but since have asked my GP who is happy to prescribe them for me.

Click the links and it gives details on how these drugs should work;
http://careoncologyclinic.com/cancer-treatment-options/

http://careoncologyclinic.com/wp-content/uploads/2015/08/CANCER-BIOLOGY.pdf

 

I have also been recommended the following by my friend who has had huge success with his canSer and is currently free of incurable lung canSer;
B15
B17
Pancreatic enzymes
Zinc

The first three he suggested I buy from a company in Mexico. He has done a lot of research into the best possible supplements. I take his word for it! I haven’t yet started these but will soon.

My friend Raquel, the patient advocate I spoke about last week suggests the following supplements as recommended by a doctor working with the clinic in Germany suggesting that taking them prior to having any immunotherapy would be a good grounding and make the recipicient much stronger and have more success:

Selenium
Zinc
Carnitine
Vitamin D
Omega 3
Vitamin A palmitate
Boswellia
DCA
Psorinum
Multi impulse
I am not familiar with all the supplements mentioned and will research into whether I should add them to my already extensive list.
Looking at my RGCC report it suggests I have one of each column and change it up every month;
i;                                                              ii;                                             iii;
Artecin                                                 Virxcan                                  Genistein
Ascorbic Acid                                                                                      Indol 3 carbinol
Bio d Mulsion                                                                                     Quercetin
numedica miscellised D3
C Statin                                                                                                 Salvestrol
DCA
Lycopene
Salicinium
Super artemesinin

There’s a lot there to take in and I never really know if they are having an effect so I have to go with how I feel and what my body tells me.

Right now I know that since I started taking multi impulse and liposomal vitamin c on top of everything I currently take I have felt stronger, less nauseous and hopefully after having my bloods taken today my results will show a stronger me reflected in my blood.

This weekend was great again spending my time with my Bear. Sadly my hair has been falling out since having TACE and as much as I was hoping some would last it was driving me mad finding hair everywhere and poor Pete was inhaling it at night. I could hear him blowing it away! Haha.
Bald again. Initially I was bothered. But it is only hair, as I keep telling myself. On the up side, my cough has started going which must mean the treatment is working! Yay…

The ups and downs of being a triple negative canSer patient….

 

 

I met an angel….

Whilst in Duderstadt last I was sitting having the infusions and a lovely lady came in asked me if I was English. She began talking to me in detail about herself and who she was. Her name is Raquel and she works alongside Dr Nesselhut by helping his patients who travel from Portugal and need assistance with language and guidance and more. She has such an interesting history and really is a phenomenal individual who dedicates her life to helping others.

She calls herself a patient advocate. I think it is a really lovely job and title. Basically she assists from start to finish with organising treatment for the patient by liaising and emailing and making phone calls to the doctors on your behalf. She is incredibly talented with languages and her knowledge of the medical world is huge. She does a lot research into drugs and treatments so that she can assist all kinds of patients not just canSer patients.

I wanted to share her details as I know that if in the beginning (or sometimes even now) I just wish someone could have helped me and pointed me in the right direction, advising me what to do and what supplements to take and deciphering the treatment that I was going to receive and so on.

Raquel is a bit like an angel really. She guides and protects you. Therefore I asked if she wouldn’t mind me sharing her details with you.

Here is her web address; www.raquelabreu.com

Email address is: raquelabreu70@gmail.com

Feel free to peruse the website and contact her. You can let her know that Claire gave you her details.

X

 

Scan results just in….

Well, well, well…. I did not expect that.

Today I finally got the scan results from the scans I had a few weeks ago at the Churchill hospital, Oxford.

Actually today has been very good in many ways. I have had many distractions today prior to getting to hospital and also whilst at hospital. This deflected my anxiety and fear that I usually experience.

You know me, always fearing the worst. Well actually I don’t think I know of anyone that doesn’t feel fear when they have canSer and are awaiting results.

When we were waiting to see Prof Harris his secretary joined Pete and I for a little chat. I feel like part of a family there. I know the receptionists well, the secretaries, the phlebotomist and of course the consultants and Prof.

In fact that helped kill the waiting time and before I knew it we were called into see him. At this point I am normally shaking in my boots but there was no waiting time and in came the Prof. He got stuck in immediately with telling me my MRI results. Urgh…

I have been dreading this due to the changes I have been feeling with migraine visuals, the odd weird feeling and nausea, BUT good news. The only remaining tumour that is in the frontal lobe that was ‘gamma knifed’ is decreasing in size. We were informed that this could take three plus months at least to reduce and go. More likely to be six months…. This is a real relief! Thoughts run wild sometimes but it is so good to know!

Then came my CT scan results. They show that everything remains stable. There has been an increase in the largest lesion in my right lung, but I already knew this from having seen Prof Vogl recently. I also have a new enlarged hilar node previously 8mm x 8mm now 19mm x 15mm. The rest of the lymph nodes are subcentremetre.

There are no new lesions anywhere else, including my liver, abdomen and so on. The vertebral lesions are still stable and predominantly sclerotic and of course that annoying broken rib is still showing.

The first thing Pete and I thought was, I had two lesions in the right upper lung. They now only mention the one large one. Does this mean that the two have connected and become one? If this is the case then the increase in size makes a lot of sense and isn’t that great an increase after all. Prof said it is feasible that could have happened.

Also in my last scan they mentioned several new right upper lobe peribronchiolar nodules. These are not mentioned. That doesn’t mean they aren’t there but they certainly haven’t increased if they are there. The hilar node is the newest of them all but this has been large before then it went away.

I have to say overall I am one happy kitten. I was dreading getting the results and definitely feared the worst.

Prof said that with the progression of the right lung what treatment did we propose to do next? So we proceeded to advise him off what I had already had in the last few weeks. He scribbled notes in my ever growing file, of which no treatment is provided by them but hey ho, nevertheless it is still growing.

Prof Harris seemed pleased that my weight had stayed the same. I was weighed upon my arrival today and my weight was 58 kilos, exactly the same weight as last time. He said it was good and healthy. I informed him that I had eaten well over the weekend but I had struggled recently with nausea and eating. I have to admit I am feeling tip top since I have eaten more. I have made such a conscious effort over the weekend to not be bothered by smells and what I eat. Pete has proactively chosen foods that will help bulk me up but are hugely nutritious and fresh. I have been really focussing my mind to be able to have a healthier appetite. It’s working! It was helped by going to Borough market in London an shopping for fresh foods last weekend.

So what’s next?

Right now I am really happy. I am relieved and have to remember that I have got to crack on and work harder to really get this reducing and going. My Mr Motivator (Bear) was giving me a pep talk on the way home and I am once again all fired up. Not that I wasn’t but it is good to hear it from someone else too.

It was really good to see the Prof. He seemed so positive and asked ‘how long has it been now?’ I told him 3 years since I was told it was incurable. He blurted, ‘not by me!’ and in September 5 years since I was first ever diagnosed with breast canSer. Seeing his secretary too was lovely. She was so kind and said that she is really behind me in everything I do. She says that she often sits saying, ‘Go on Claire you can do it’. This makes me smile. How nice it is that people support me. I know I am not alone and I never feel alone. Thank you everyone!

Prof informed us that they are going to be holding a nivolumab trial in Oxford! BUT I cannot be part of it. Firstly because the entry requirements are that the participant must never have had immunotherapy before and also it’s for Ovarian canSer. So any ladies reading this in this area with ovarian canSer you may want to be on the lookout or be like me and start poking around and asking your consultant.

This is great news though. This means they really are excited about nivolumab. What we feel now though is what is the next thing? There must be something in the pipeline….. There always is.

My Bear took the news well but he didn’t seem surprised at all. He told me all along that everything would be fine and that the brain was doing fine and that the body is sorting itself out. I told him I didn’t doubt his thoughts but I was so worried because of the symptoms I had been experiencing, especially the head. It’s scary…. He said I must trust the Bear more. Love him.

So what’s next? I have to focus on meditation, yoga, breathing, exercise and visualisation. My mind needs strength. I have to get rid of this cough and sore ribs. That will take time with TACE but I haven’t forgotten my meds and supplements.

 

Sunday I had a review telephone conversation with a doctor from the Care Oncology Clinic in London. We discussed the tablets they prescribed me back in October. I still take metformin, atorvastatin and mebendazole. I have sent them the results today and await a review of what to change either by increasing, decreasing or changing to other things.

I am also making tweaks to what I currently take supplement wise as I have been recommended a few variants recently. Once I am clear on what I am taking I will let you all know and why. Over the next few months I will be updating my web pages so that you can make your own choices.

 

In my head right now I am having a little dance. I will get up and actually dance in a mo. Kitchen dancing is my favourite! I am really pleased there were no surprises and that the bad ones are the ones I already knew about.
What dance shall I do? Moonwalk, running man… no, my happy dance! (Ever seen Will and Grace when Woody Harrelson does his ‘happy dance’?) Yep, that’s the one I am going to do myself. I might throw a few other funky moves in there too!

You know this just proves that I am well; I am living, thriving and surviving with canSer. OK I have had some progression and I do still have it in me. But there are improvements in areas and there is a long way until I am clear but if it doesn’t affect my day to day living then I am on doing the best I can.

I can’t wait for the Bear to come home from work and have a cuddle. I’m still going to have a smile on my face. Today is a good day.

 

Light and Love. X