Results.. the quick version or the long?

 Today was the day that was looming. Despite being calm and brave I did feel sick to my stomach again getting ready for the hospital. I simply can’t help it. Pete was the same although he probably wouldn’t admit it.
Prof Harris was on form as usual and asked about my henna head and seemed really tickled by it.
He immediately said its good news…. It’s so good that he knows us now.
The suspense kills us!

He said it was a bit complicated to explain but he sort of stammered his way through it. Nothing is ever black and white is it?

What I would love to hear is you have no cancer Mrs Grant.. You are in remission!
But sadly life isn’t quite as cut and dry as that and I am not one of those miracle remissions that you read online… Don’t know why.. That’s triple negative for you.
BUT! There is loads of amazing news.

The lesion in the lower right lobe has reduced from 33 x 27mm to 27 x 15mm.
The lesion in the right upper lung now measures 38 x27mm which was previously 40x39mm.
The small bilateral nodules have also reduced in size.
The left lung looks stable except the lower nodule apparently has increased by 1mm.. Hmm really?
There were areas of lymphangitis carcinomatosa!? And pleural thickening… These have all now been resolved.
The pericardial effusion/ fluid around my heart, has all now gone too! Woo!
The lymph nodes, a huge area of concern for me, has all now halved in size!

Earlier this year they picked up on an ovarian mass and told me it wasn’t cancerous from the way it looks. They now are unsure if it is cancerous or not, however, this has reduced in size too so they do not feel it is necessary to do anything about at this stage.

They did find the following though;
A broken rib on the right side of my body! Pete was right! I knew I was in agony when I coughed and sneezed a few weeks ago. I felt such a drama queen rolling around the floor in pain and not being able to cough properly. Well now I know I had due cause for it! A bloody broken rib! That explains why sitting and lying down having scans at Prof Vogl’s and Dr Seibenhuners was such a challenge…
The other thing they have detected is a bit confusing;

A new 21mm mixed sclerotic and lytic lesion in the left side of the body of t8 and a similar lesion on t9… So canSer had spread to my bones… Bugger…HOWEVER, Prof says that it actually means that the CanSer started to grow but now it looks like it is repairing and that the bones are hardening.. So it is getting better.
This obviously disturbs me but does make me think back to October time. I was lying in bed many a time and had a feeling of there being a hole in my back. I remember saying that I feel like my energy was pouring out of this hole. The discomfort and pain kept me awake quite a few nights and now I know it was that. I don’t have the pain or discomfort any more… Bizarre but brilliant!

So Prof says carry on as I am and the only new introduction is that he wants me to start a new drug for the bones. It is not to stop canSer but assist the bones is staying strong. It is called denosumab. I am to have it injected and it will be organised by hospital at home. I am happy to inject myself. I will also need to have calcium and vitamin d. Well I have vitamin d already. However I had reduced it since I was tested and told it was seriously high.
The MRI scan results were equally as good. All tumours have reduced by 50% and should continue to reduce in size. I am to continue on the low dose of steroids for now.

As well as this news Prof gave me a chart of my blood results over the last few months.
It shows that my platelet count has increased above a normal level. He says it could be due to the chemo treatment I am having. It increased from about August so this doesn’t correlate with that but maybe with other treatments.
It showed my haemoglobin levels have dropped at the same time. He says there is now a risk of thrombosis and I should be careful when flying.

The other thing he pointed out was the CA -15-3 in my blood. This is actually the amount of cancer cells actively circulating. A normal person’s level is about 30 iu/ml.
At the beginning of July time mine was really high at 60iu/ml. It has gradually decreased to 45iu/ml…. This is so exciting! It’s reducing.. If I can get it low enough canSer may actually stop growing and leave my body!

Pete and I are over the moon, but we have such a long way to go and it does drive me on to really blast it at my next visit in Germany, then hopefully the trial with the pdl1 in London will be the thing that blasts it.
We have been receiving so much info through email and Google alerts about immunotherapy and timings. It seems things work better when administered every two weeks.
We are still gathering information but once we do we will post on here all the details.

I can’t say initially I was jumping with joy because it’s a lot to take in and nothing is ever simple, then Pete came home work and we decided that a celebration was due and cracked open a bottle of champagne. It felt fitting that we should enjoy ourselves and give ourselves a boost for the next chapter, 50% left to go…..

Today we leave for our road trip to Germany… It’s going to be a long few days but worth it. Plus I get to chat to my Bear for hours if I can stay awake! Haha….

Xx

9

Dr Hembry gave me the results…

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….

 

The results are in……..

Well what can I say.. Today is one of those days that I have something good to write about.

The day has been looming for a week. Initially at the time of my scan I felt deep inside that everything was going to be ok but as the week wore on I let my head get the better of me and whether its self preservation I started to fear the worst. This morning I felt like I was having a nervous breakdown and I felt so sick on the way to hospital with so much adrenalin rushing round my body.

The journey to the hospital should have been a sign. It took me 20 minutes door to door.. Amazing. All the traffic lights were green and the day has been absolutely gorgeous here, bright and sunny and almost warm enough to sit out in it.

Pete met me there and he gave me a pep talk as usual to calm me down. He said that no matter what the results say we will keep on working, that I feel great and that warrants a lot, I can deal with the disease much better if I feel good, and he reminded me that today is really the only important day to think about, not tomorrow or next week as today is the day we are living… I know he is right. Once I got that in my head I calmed down. In the waiting room, we met an old friend of Pete’s with his wife who has leukaemia. She too looks well and they are having their own battle with what treatment is available to them. They are not t simply taking what one consultant tells them as they have told her she is too old for a bone marrow transplant at 70 years old. They have changed consultants and feel better knowing they have a plan.

We were only there for ten minutes when I had to have my usual weigh in ( to see if I am losing weight- indicates illness) and the nurse asked me who I would like to see today; Prof Harris, Nicky Levitt or Dr Lord (whom I haven’t met before). Well that’s a first and also very kind of the nurse to ask as she must be well aware of how I feel about them. From that list I chose Prof Harris and immediately wondered if I had chosen the right one. I wasn’t sure if I was ready to have confrontation and go over old ground. Pete said I had chosen the right one so that was good. No sooner had I chosen we were asked to go through to see him. Wow that is the quickest I have ever gone through to my appointment.

Prof Harris came in looking rather dapper I must say with a purple leopard print tie! I told him I loved the tie.. I couldn’t help myself. He sat down and within an instance told us it was GOOD news!

I turned to Pete whose eyes had already filled with tears (he won’t admit it was tears because he is a bear and they don’t cry- ha-ha!) Prof Harris had printed me a copy of the report which I must say was slightly more detailed than the last I have had. The upshot of it was that it looks like the capecitibine chemo drugs are working. The lung nodes have all decreased in size for example the largest was 14mm is now 9mm. The pretracheal node which measured 23 x 16 mm is now 9 x mm and so too have all the other nodes decreased on size. The pericardial effusion (fluid round my heart) has also decreased. Plus there has been no spread to any other organs or bones that they can see.  The overall impression is that it is an interval disease response.

Well whatever you call it it’s bloody brilliant news! I knew it really deep down that it was going to be good news. I had a strong feeling last week but of course doubted myself just in case I was wrong like I have been I the past. I have to listen to my body more.

Needless to say Prof Harris said, ‘Go on then off you go. See you in three weeks.’

I collected my chemo drugs which I start tomorrow and I have never been so keen to get onto them again! This is exactly what I needed. I needed to kick start everything and not get complacent. The Prof said that exercise and eating well is key. He said that my current weight will be helping me with coping with the drugs and combating the canSer.

Well as soon as I left his office whilst waiting to have my bloods taken I text all my nearest and dearest and have been simply bursting with happiness and smiles all afternoon.

I am overwhelmed with the comments and support I have today on facebook too… Brings a happy tear to my eye…. but most of all I just feel like dancing!! So the running man it is in my kitchen. Whoop!

 

Do I still have canSer?

Sigh… A weekend of happiness. I didnt blog because I was far too chilled out. My mood lifted and I had a great time. The weather has been cold but sunny so we took a drive to the boat to make sure she is all ready for winter. Pete’s sister met us for lunch and we exchanged Christmas gifts. Then hopped back in the car to home- Pete did his chores- visitng Ray in hospital (Yep, he’s back there again) and shopping whilst I unpacled boat stuff and got our selves ready for a big night in front of the TV.

Sunday, I allowed myself not to do meditation, yoga or exercise. We got up early and out to Reading for some shopping. It was meant to be Christmas shopping (maybe two things were bought for other people!) the rest was for me! It’s weird because only four months ago I thought to myself what is the point of buying anything when I might die. I just don’t feel like that at all now. Even though I ask myself many times a day, ‘ Am I doing things right?’ ‘Do I still have canSer?’ In my gut I just feel that I’m going to be ok. When I was going through chemo around Christmas a few years ago having a chilled loving weekend like I have just had would have got me all teary eyed and upset at the thought of never having that time again, but I just don’t feel like that any more! I feel blessed, happy, excited… I’m like a child! However I do know that Santa doesn’t exist. (Oh poo. I hope there any children reading this!)

I have to admit I really want a break from the pressure of having to be so focussed. I do have my little treats where I do stray from my plan but I think it would be brilliant if I could just know that I am doing enough and that I don’t have to up it at all. I’m already doing really well I think.

Again I feel great today. I do have moments of tiredness but is that this time of the year?

I’ve had some great feedback from people following me. More than anything I long to have good news so that I can help more people get their lives back.

With regards to my results, that hasn’t got to me yet. I know it’s coming and I know there is nothing I can do about it but I do have everything crossed. Part of me thinks, nothing is ever that easy… and the other part of me thinks it has been more than three months since my last scan and a lot can happen in that time. I suppose it’s easier to believe the bad stuff. I totally knwo that there is no point in worrying and as Lindy, my sister in law says, ‘You’re not ill! Look at you!’ I have to agree with her. It’s like some sick joke, being told you have a life limiting disease when I don’t feel at all.

So today I am going to do more drawings, and hopefully get some reading done (after the washing and cleaning of course!) I don’t want to lose my flow and to lose sight of the end goal so I must keep going.

(A little bit of exciting gossip- Pete was at the Estate Agent of the Year awards last week and one of his clients, Haus won an award. A memeber of Haus’s team approached pete and said that she has seen my website. She said that her sister does the same thing.. maybe we know of her? The chairty and website is called Coppafeel! Well of course we know of it and have thought of Kris as a pioneer. You never know maybe we can get our heads together.)