Herpes to spark an immune response…..

Another week has passed and there’s not much to report. In the news, canSer is still cropping up with research about herpes being able to spark an immune response and they are now using it for certain trials and canSer types. This is very similar to what I have in Germany with the Newcastle disease virus.

Also they are going to be opening a canSer immunology centre at Southampton hospital. We knew they were doing trials there for melanoma and lung canSer etc but now it seems they are actually going to be dedicating some money and resources to actually having an immunology department for treating canSer patients. Things have been changing slowly for canSer treatment, apparently for as long as ten years, then why are we still treating people with chemo alone?

For me, I feel much better now. My arm has gone back to its usual size. It still has a little lump at the site of the injection and is a little itchy but nothing to shout about. I feel generally well and have been exercising and plodding along nicely.

I have been contacted by the Care Oncology Clinic, whom I am prescribed drugs such as mebendazole, atorvastatin and so on. They use drugs that are ordinarily prescribed for other ailments such as metformin for diabetes and have noticed through research that they could be beneficial for canSer, particularly breast canSer. As you may remember I have been taking metformin for nearly two years but added mebendazole and atorvastatin in October. I do not know if they are working but as they do not give me any side effects I feel it is necessary to continue. I spoke to one of the doctors there this morning and have scheduled a review in July.

I was also contacted by the Daily Mail to have an interview regarding this subject. I will let you know when I am featured in it.

Although I have felt generally well I haven’t been getting on well in the evenings. I have now returned to taking all my drugs and supplements and I don’t have any trouble keeping them down in the mornings. I am even making my own fresh green juice again. This is a revelation ever since I went off them at the end of last year. Then in the evenings for some reason I feel quite nauseas and have to vomit not long after taking my evening combination. I have tried taking certain things out and eating before, during or after. Some nights are fine then others not so. It’s ruining my evenings and evening meal, in particular. I will have to keep making changes and see if there is a certain culprit.

I have felt quite tired this week also and have been taking iron supplements in case my bloods need that helping hand. I have felt a bit light headed but nothing like it was before.

Emotionally I feel ok. I try so hard not to think about canSer all the time but it is so hard. I don’t want to take anything for granted and always want to try my hardest at beating this thing. I do wonder what might happen but it’s all such a waste of time wasting my energy on what may be. But for the next week I am going to be thinking of nothing but having fun and relaxation.

Bear and I are off for some sun and fun with friends. It’s the prelude to my ‘big’ birthday in a few weeks and we are very excited! Technically, our holiday starts tonight when Bear gets home from work…..I can’t wait! Light and Love! X

An arm like an Elephants leg and Pacific Sea Snail…. can it get any more weird?

Time really does fly. I can’t believe it was the 8th May when I last blogged.

This lapse in time could be a good thing of course. It means life has been trundling along nicely, just letting life runs its course. This month has been lovely so far and I have been busy at home and with hospital appointments and so on. It’s all been pretty normal. I like normal.

Today I am having a day on the sofa recovering. We just got back from Germany after having treatment at Dr Nesselhuts clinic. It’s been six weeks since I went last, but it’s not as if I haven’t had something going on in between. Let’s not forget gamma knife surgery! How could I? The holes in my head are better but it’s still tender to lie on them and if I frown too hard my forehead hurts! Ha-ha!

We travelled on a very early flight and as usual didn’t get any sleep that night as we were too worried about not waking up in time!

Day one started with blood tests and an infusion of Nivolumab. I don’t get any side effects from it so that’s good.

Day two was slightly different than normal. This time I asked to have infusions of B17 and DMSO, just like I had had in Frankfurt at Dr Seibunhuners clinic. I had overheard someone the last time I was there having it. Now, I’ve been going to Nesselhuts for years and didn’t even know he offered it! I figured that based on the RGCC blood test I had done a year ago, that anything that the canSer in me didn’t like I should have. Get as much ammo as I can. But first I had about 250ml of blood taken for my next visit for DC therapy. I was told that my bloods were better this time so they could take the blood. Great news….

Then I had hyperthermia on my chest whilst having an infusion of B17 followed by an injection of DMSO in upper right buttock as well as a shot of Newcastle Disease Virus. Then about an hour later we met with Dr Nesselhut who gave me my vaccination in my left arm. It sounds a lot and it probably is.

When I left the clinic I took the print out of my blood test. I am a bit weird I like to keep them to see how well I am doing. This is when I noticed that my bloods weren’t as good as the nurse had told me. She had confused the dates and the ‘good’ results were in fact the last time I was there in April! My bloods this time were terrible. My haemoglobin has reduced to 8.6. The recommended amount is 12-16. Boo, double boo. I got straight onto email to my oncologist, Prof Harris who said it isn’t that low really for someone having treatment and not worry about it. He wants me to have it monitored to see if there is a trend but for now if I am feeling ok, just keep on trucking. Luckily I don’t feel massively out of breath or more tired than normal but I will try to get those bloods to improve! Pete is threatening with feeding me liver… No way Jose! Urgh…. It takes me back to being a kid, when Mum cooked liver and bacon for tea on Saturdays. I hated it then, I can’t see me liking it now!

For the first time in nearly three years we saw Dr Nesselhut on time. Brilliant! He had a lot to talk about as usual and we discussed the fact that things had been going well but I did have a few new tumours in my right lung. He got straight on the phone and spoke to his lab and told then they need to make changes to my vaccination. I reminded him about an email I had received from his clinic stating they were going to give me a tetanus jab at the same time as having my vaccination to spark an immune response. This wasn’t just the usual DC vaccine as Dr Nesslehut felt that after 5 months and slight progression he would look to stimulate my immune system in other ways – so he added KLH. This is Keyhole limpet hemocyanin. This is a metal carrying protein that has a variety of jobs, including carrying other proteins, enzymes and vaccines. In this instance the origin is the relevant bit. The KLH comes from the giant keyhole limpet (so a sort of sea snail), which is found in the northeast Pacific off the coast of California. It is “thought” to be non toxic and has already proven results in producing immune response in bladder canSer. A litre of blood from a keyhole limpet will produce 20 grams of protein, which can be worth as much as $100,000!!

As usual it stung and I had an immediate reaction of the skin becoming raised and red. This I believe is good. The thing is it hasn’t stopped there. It became quite a raised a lump and right now my arm is like an elephant’s leg!

Am I concerned? Not overly but it is really uncomfortable and itchy and so bloated that the skin feels tight and red. It has also travelled and grown and now my whole arm is distended. This isn’t the first time I have had such a reaction but this is the first time it has been so uncomfortable.

We discussed what should happen next. When should my next appointment be? He is meeting with the top guy from RGCC next week and they are talking about making personalised treatments and vaccines for patients, using antigen testing. They should then be able to tell me what fires the canSer inside me and then hopefully provide a personalised solution. Wow, this could be ground breaking.

So that’s how I have left it. We have no idea of when I am going back or how much something like that could cost. I await with baited breath. All I know is that I am booked in Nesselhuts diary to be discussed next week and then I should get an email.

We then left feeling satisfied and still in disbelief that we had been seen on time! This made us laugh as we now had seven hours till our flight, but that was ok as we could take our time getting to the airport.

We got to the airport with four hours to kill and ordinarily this wouldn’t matter but I was starting to feel the effects of my ever growing arm and now side effects such as fever and shivering.

To top it off, (Boys you might want to close your eyes right now) I then got my period! I haven’t had one for over five months mainly due to treatment affecting my body, so I am elated my body has returned to normal, but also timing couldn’t have been better! Argh!

Then came the fun part…. our flight was delayed until after midnight! Argh again! We laughed about it at first because on the way in the car I had said, ‘I bet our flight is delayed!’, because we were having such a good day with getting everything on time. God had been listening and Sod’s law came into play. It happened. We have never had a flight delayed at Hannover. Not the best day for flight delays. I progressively felt worse and when we eventually got on the airplane I was shaking, feeling hot but freezing cold. Boo!

Pete was getting ever more tired and had to drive us home when we got back to Blighty. He did such a great job and didn’t moan once. He was so tired and even got up really early this morning to go to work. He left me in bed and told me to stay there. Well, I did for a while but decided to transfer myself to the sofa and now I have been getting on with some jobs and organising myself for the next few days. Never fear… I will be hitting the sofa again straight after typing this.

I have to say I still feel rubbish. I don’t have shivers or fever thankfully. But my arm is driving me mental! It’s stiff and bloated and itchy and can you believe something so minor is causing me so much discomfort? For goodness sake I had a frame screwed to my skull a few weeks ago and I moaned less!

I said to Pete whilst sitting on the floor at the airport, ‘As things have been coming true today when I said them out loud, maybe the response in my arm and body is proof that the treatment is going to be exceptionally good this time. Maybe it’s going to send the canSer packing!’ I put it out there for the Universe and God and Sod’s Law to hear…. now make it come true!

Whilst away I was checking social media and heard the tragic news that a fellow triple negative lady had passed suddenly. Jojo Gingerhead, as she called herself, wrote a really funny blog and being only 32 years old was too young to be going through this horrible journey. I was so shocked and saddened at her death as only a few weeks earlier we had been chatting about treatments and how I could help advise her. At the time she was on chemo and wanted to sit that out before trying to raise funds to go to Germany. I had suggested TACE as a tolerable targeted treatment with immediate response, but it seems it was too late. She was already in a lot of pain and on morphine to ease that pain. Our love, thoughts and condolences go out to Jojo’s family and friends and we want them to know that she still inspires us to keep going and to find a cure.

Getting news like that does spook me. I don’t want to suffer in pain and I don’t want anyone else to either. People leave it too late to really stop the canSer and what we would really like is for every triple negative survivor to seek help and get treatment to prevent it returning or stop it in its tracks. Not to leave it too long when the body is weak and cannot fight it. This got us thinking.

If all triple negative ladies could read about my experiences and the treatments and experiences I have had personally, maybe they could take something away from it and they would live to tell the tale and be alive and kicking for many years to come. We are so close to a targeted treatment for triple negative breast cancer. No one will ever say cure, as they don’t believe it will happen but as Nesselhut always tells me, ‘All I want, is to keep you alive to have a good life’. As much as I want complete remission and feel sad when I have small setbacks, he is right. If I can continue for years to come without symptoms then I have cracked it.

This is why I have decided to update and upgrade my website. I have my hubby and friends (Bless you Adam) on board who are helping me have a logo redesigned and the website to be updated so that I can add all my new experiences and research to it day or night. Thanks to the hundreds of people who helped me with making a decision on the logo yesterday. It is so interesting hearing all your points of view. It really helps.

Once it’s complete and I have updated it I will let you all know! I am very excited. Even if I can help just one person before its too late then I’ve done something good.

I met with a friend recently (over afternoon tea, don’t you know, –said in a posh sounding voice!) who told me of a lady who lives in her area who also has triple negative breast cancer and is trying to raise money so that she can go to Germany and have treatments. This got me worried and excited all at once. I wanted to make sure she was going for the right kind of treatment and also not to one of the clinics with a ridiculous price and limited clinical experience, so felt the need to contact her. Her name is Louise and here is her website and blog: http://www.cancerispants.co.uk/

Actually her daughter, Ella started the web page for her and tells the family’s story. Please go and support her and if you can, help fund her on her way. I will be speaking with her tomorrow and hopefully helping her with more details for her trip. She seems lovely and I am excited at having a new friend.

Right, now me and my bloated arm are going to hit the sofa and whine and moan to myself all evening. Sometimes it’s good to wallow but not for long though! Back to it tomorrow. Onwards and upwards…. Light and Love all. Hugs. X

GcMAF- Unfairly interviewed or a fair synopsis?

I forgot to mention in yesterdays blog about the interview and discussion on the The One Show this week regarding GcMAF.

I was shocked as I was making dinner earlier this week when I heard a reporter discussing GcMAF on National TV. I would always hope there is a fair impartial view on such things but sadly in this case there was not.

She slated GcMAF by stating there is no scientific evidence that it works, that their lab has been shut down as some of the vials of GcMAF showed not to be suitable for human consumption.

Then she interviewed a support group who use GcMAF followed by the MD, David Noakes.

It is no secret that I am unsure about GcMAF in some ways mainly their manner in telling one that if you do not administer GcMAF in every single way that they recommend then one will not survive canSer.

I went to have a week’s treatment March last year. I didn’t find it hugely professional but on the other side I think it did help with hindering the growth of my current tumours. I came home and continued using it by injecting it as well as inhaling it for about three months. The reason for stopping was mainly due to starting immunotherapy with Prof Dalgliesh and also having radiofrequency ablation.

At that point I did decide to start using the Bravo probiotics which contains GcMAF, which I still use daily now. My main reason is to strengthen the immunity in my gut.

I felt saddened at the interviews. The interviewer wasn’t a scientist or a doctor but she was very aggressive towards everyone she spoke to. We all know there are two sides to every story.

There may not be scientific evidence that has been run by the UK government or NHS as yet, but there are scientific papers that the doctors who work with GcMAF have undertaken and published. They have also been present at many symposiums and they have grown dramatically, even since I went last year.

This doesn’t mean it is a ‘miracle cure’ that they profess it to be but as one lady in the support group mentioned, ‘When you have been told that you have terminal canSer then any option is better than none.

I didn’t experience any side effects and felt fine throughout. My gripe with them was how unprofessional they were as company and I felt they were very flaky. The clinic I went to was a stately home and very odd. Others I met there were thrilled with the environment and the people running it. So each to their own.

I took an instant dislike to David Noakes who I first encountered on email. He was obnoxious and very unlikeable. I believed he didn’t want to help people, he wanted to make money. I then met him on my last day at the clinic when he was just as obnoxious and self centred.

Not only that, after I returned I emailed GcMAF (by the way, there was only one email address to contact them on and you never knew who would reply)as they had asked me to basically, write a testimonial, so I took the opportunity to give them an honest synopsis of my week and how I felt. Of course this didn’t go down very well and David Noakes replied telling me in a nutshell, that I had only done 20% of the treatment plan they recommended and that it was my fault if I failed.

I remember my late friend Leanne, who called them to get more information and she happened to speak to David Noakes who guaranteed her a 100% success if she used GcMAF. No one can say that?! This was my biggest problem with them, is that they let someone like him front the company and make spurious claims!

I think there is something good about GcMAF otherwise I wouldn’t have used it nor still use the probiotics. But I do feel very sad that it has been slated on national TV and they weren’t given a chance. However, maybe this is what they needed to shake them up and become more professional.

I have checked online and it seems the US did a clinical trial last year using GcMAF.
I have also checked GcMAF’s website and it is now not possible to purchase the product from them directly.

What are your thoughts and views on GcMAF?

Am I being a spoilt brat?

Mum has gone home this morning… We got so much done whilst she was here; sewing curtains and knitting blankets and gardening and more. Poor mum doesn’t get any rest whilst she is here! I hope she didn’t want one! It’s nice for her to be home I am sure but I always feel sad when she goes. We wish we lived closer to each other so we could see each other more.

Scan results:
So the all anticipated CT scan results finally came through yesterday by email. As predicted they were not ready on Tuesday at my clinic appointment with the Prof. That was disappointing as I sat there for over two hours. So I pursued my results by email and the Prof‘s secretary was hugely disappointed as she had asked the radiology department to have them ready for me. I am not surprised.

I got them yesterday and wanted Pete to read them first and decipher them in his way but the attachment on the email bore a hole in my head. I couldn’t wait nor help myself. I have to say I was disappointed with what I read.

I expected more reductions and even less tumours. And essentially the scan results are good but in my usual way I see the negative as a big setback.

Basically the positives are;

None of the tumours that were present in February have grown nor have they reduced. They are stable. This is great, essentially. The mediastinal lymph nodes are still subcentimetre. There is no mention of the hilar node- so maybe that isn’t there? Great!

There are no new ones in my abdomen or liver and no mention of that one that was there in my ovaries. So that has gone too and stayed gone since February.

The spine still has the stable predominantly sclerotic vertebral lesions. No change there then.

The negatives;
There is a cluster if several new progressive right upper lobe coalescent peribronchialor nodules that lie inferior to the largest tumour in my right lung. I am not sure how many several are and if that means cancerous but I am guessing it is.

This really got me peeved. I was so happy with my brain being so successful and really hoped my body would emulate it. I can’t help but feel disappointed. It’s like whatever I am doing is never quite enough. I am never doing more than enough; I am only doing just enough to get by.

I have sent the results to Dr Nesselhut so he can plan my next treatment whether it is still continuing with nivolumab or not. He is away until Monday so I have to wait until then.

In the meantime I have been messaging the Prof and asking some questions but his secretary is off until Monday also. I have running through my mind how I feel and as time passes and I settle I become more rational but I felt grumpy and upset initially. Enough isn’t enough for me. I want more. I guess that good as it keeps me fighting but it also messes with my head. I sit thinking what have I done differently? What could I do differently?

Pete thought the results were great and said I have focussed so much on fixing the brain that now it’s time to focus on the body. Maybe I have but I really believed I had nailed it especially as I feel so good lately, (although ever since gamma knife I am feeling a little more tired than normal.)

If I look at my previous scans from last October onwards, I have done so well. I have reduced and resolved tumours. I mean come on…. but I need it to continue in the right direction. I guess I just want some leeway, some respite from having to be so intense and I so wanted to be able to have treatment less and less. This was assuming that nivolumab was the answer. I now feel that I may need to go and have TACE again. I will discuss it once I have spoken to Nesselhut.

My bloods are also low again; haemoglobin, blood count and red blood cells etc. I don’t know why and I certainly don’t feel light headed. Maybe it’s because of the gamma knife. I will increase my iron intake with foods like beans, pulses, spinach etc, but Prof has told me in the past its nothing that diet can change. No harm in trying.

Head update:

My head has been changing daily since the gamma knife procedure. I have had tingling and numbness and now my temple is very tender on the right. The entry wounds are healing brilliantly but I do feel ultra sensitive when I lay down. It doesn’t help that I keep banging my head. I always was a clumsy person! I have felt nauseas and been sick a few times but I think that could be anxiety at times.

The C Word:

I watched the programme Monday night with my mum and Pete. I wasn’t looking forward to it but know that Sheridan Smith is an amazing actress and would do a great job of it. I have the book already but have never read it. I have to say it was very powerful but I felt quite angry throughout it. I felt they focussed so much on hair loss and looks. I know this is so important for many women but they didn’t really go down the secondary cancer route. I felt frustrated that many people will still believe it’s all over once it spreads but I hope to show everyone that I can beat it or at least stay alive until they find that treatment that will keep it stable for many years. I haven’t done too badly so far as its now approaching three years of having secondary triple negative breast cancer. It was hugely emotional and I felt unsettled after as I so don’t want to be a statistic and be another young woman dying of breast cancer.

News of Rio Ferdinand’s wife dying has also been hard to stomach this week and all it does is make me worry, I think. I know how fragile life is anyway but I hope things don’t turn for the worse. I feel so sad for Rio and his family and it feels like every where I look some young amazing woman is being taken from her family. (Watching the Restoration Man last night also had another young mum die of cancer) I can’t be ignorant and pretend it doesn’t happen but it makes it so hard to think am I going to be next? Or how long do I have?

I don’t think any of that has been helped when I went for a smear test yesterday (close your eyes boys, you might not like reading these intimate details!) Ouch, ouch, ouch!!!!! That’s exactly what I said to the nurse. It bloody hurt like hell this time round. I’m being a pansy after last week’s procedure but OUCH!

I spoke to a doctor at the Care Oncology Clinic earlier today and told him my results. He said that I should feel really positive and sometimes things like the new nodules could just be inflammation and not to read too much into them. He has re ordered Mebendazole for me and I will see them soon to discuss the drugs they put me on back on October; Metformin, Mebendazole and Atorvastatin.

Now I have put all this down on ‘paper’ I feel better. I feel a bit silly that I am moaning when I have got it so good and actually things are great for me. I just want them to BETTER! I want Pete to have some respite too. This is so hard on him every month. The cost, the upheaval, the decision making on what we should do next. I wish the bloody NHS would make nivolumab and ipilimumab accessible to the masses. Hurry up research! I ‘m being a spoilt brat now, but I want to think about something else.

It doesn’t stop Pete and me from having fun and loving each other though and that’s what we have to do. All there is… is LOVE.

I’m off for some iron rich food and to try and dodge the rain whilst hanging out washing. It’s the simple things that keep me going.

Light and Love.

C X