Making Bravo Probiotic…have I done it right?

I recently received the order I placed for GcMAF Bravo probiotic kit. I have been storing it in the fridge as instructed until two days ago when I followed the simple instruction book and went through the process of making and fermenting the probiotics. It is currently sitting in a bowl in the kitchen. I decided to use whole goat’s milk, which on the instructions it said i could do if I didn’t want to use cow’s milk. I have been gently prodding the bowl on the outside and as we approach 48 hours, which in the booklet, it says it should be set and ready to go into the fridge. I fear that it still has far too much movement… Oh no… Have I done something wrong? I couldn’t have, it was so simple. Not even I could get it wrong. Well once we arrive at 48 hours I will be dividing it into 100 ml bowls and storing in the fridge. I have everything crossed its right…

 

Bravo Probiotic Easy Starter Kit
Fermenting the milk with the ingredients from the kit… waiting 48 hours.

I’ll let you know how it turns out.

I’m quite excited to start eating it. I really think gut health is of huge importance and I am keen to ensure I can get as much help as possible in making my immune system stronger and hopefully correcting it to help kill the canSer.

I though this week was going to be a little less busy. In my mind I had planned on reading and drawing and so on but then I checked my diary and realised I had booked it out with clients! Ha ha! I don’t mind. I love my work and I could do with the money. (Not for spending on me… honest J)

I have today been emailing Prof Dalgliesh and asking if it’s ok to have my next IMM101 vaccination since the injection sites are far less inflamed and seem to be finally healing. My worry is that should I wait until after going into hospital for the ablation procedure?

I got a reply and was told as long as they are not oozing then going before is fine. If they are oozing then Prof Dalgliesh will check them out whilst I am at St George’s next week and decide from there.

OK, well I will call the London Clinic and book myself to go next Wednesday. The day before… I think.

Like I said my arm is finally not giving me any trouble. The injection sites look smaller and are definitely not oozing at night. My concern is that they will be triggered off again when I have another shot. And the last thing I need is for them to get infected in hospital. I have concerns about coming home with more than I went in there with! I guess it’s a judgment call I will have to make. It has been a month since my last one and I feel that I should keep the immunity doing something seeing as I am not having any other treatment.

Today I am feeling all a bit uneasy. I just think some days are like that and I start doubting myself. I feel better when I am immersed into things. I have a client arriving any minute for a facial so that will be lovely for me too, lots of frankincense oil to calm me down… Ahhh. I feel better already….

 

X

An update on my treatment…

So here’s an update with what’s been happening with regards to treatment.

I had a vaccination a few weeks ago and was due to go back to the London Clinic yesterday. I felt with the state of the current to vaccination sites that I would be overdoing it by having yet another one so called the clinic first thing in the morning. A doctor called me back and asked what size they were and if they were weeping. I described them both and said that they had been really oozing for the last few weeks and that the old one had reactivated. She said that it was a good thing, to keep them infection free and try not to cover them. She said if I thought they were infected to get them swabbed and checked by the GP. I told her I have a Bear taking care of them… I am to call back in a fortnight to see if they are better and if I am ready for my next round.

Whilst i was a way I had an email from Doctor Gonsalves at St Georges hospital and he gave me the low down on the procedure that I am booked for on the 19th June. I am to call the ward the day before to see if they have a bed for me and they will tell me if I should be going in the night before. Then I was advised the usual stuff before having a general anaesthetic; no eating etc… And that I am to have bloods taken that day too.

I finished taking GcMAF some time ago and now I am back using Naltrexone to the full amount of about 4.5ml per day. I am using the liquid form provided to me by the LDN Research trust.  However even though I no longer use the injections or nebuliser for GcMAF I have since bought the easy kit for the GcMAF yoghurt otherwise known as Bravo probiotic.

http://www.bravoprobiotic.com/index.php/what-is-bravo-probiotic

 

I am yet to get started but so far it looks pretty good. I haven’t bought an kits up until now because they looked a bit of a faff and I knew I would have to get myself properly geared up for it.  Then my good friend Rona; http://bisforbananascisforcancer.wordpress.com/  posted on her blog about the easy kit and it being on special offer. Well always looking for an easier route and a bit of deal I bought it. It arrived today and is in two tidy zip bags with clear and concise instructions. I am looking forward to making it with my trusty assistant. Or is it the other way round?! Pete can make it whilst I watch and take notes… haha.

The thing with the yoghurt is, even though I don’t eat dairy, I feel having good gut health and probiotics is essential for keeping well and fighting disease. Not only that, of course the other great thing is that it contains GcMAF therefore hopefully sending the macrophages in there to fight canSer but it does contain 40 strains of probiotics which is higher than the tablet forms sold in your local health store.

OK, it’s not cheap then nothing is when you have canSer. It seems everyone is out to bleed us dry.

Here is a link if you would like to purchase them;

http://www.bravoprobiotic.com/index.php/shopping

Supplement wise i am still plugging away at what I think is helping me. I am still concerned about my natural killer cells being low and I am ordering more reishi to stock on. I am also considering getting a stronger strain of cordyceps to include with the Coriolus I take.

I am unsure how my vitamin D levels are since they were rated as being far too high. I think I will do another test later this month to see if they have come down to a healthier level.

The reason for stopping GcMAF is that I firstly had run out of my current supply. It was expensive and I also wanted to see how these vaccinations will work out. I was also keen to keep my body guessing and get right stuck back in with Naltrexone. Naltrexone is approved by Prof Dalgliesh as a great anti-inflammatory so I thought now was a good time before going into hospital to really get my levels up.

I just hope that when I have the procedure in hospital by CT scan that everything inside looks ok. I thankfully still feel tip top and have no symptoms.

I can’t think of anything else that I have been, should be doing or am considering. Research keeps dripping in on Google alerts and I am ever hopeful for something to radically change the game. It can’t come quick enough for me and my friends.

 

 

 

Cheeky midweeky…

I had a visit to my local hospital Tuesday to see my oncologist Professor Harris. It has been months since I saw him and apart from emails regarding treatment options we hadn’t had any communication. It was good to see him. He seemed pretty happy. He said that he had received a very nice letter from Professor Dalgliesh. They seem to really like getting letters from each other. It strokes their egos. I think it’s great because I get good service, as it were.

We discussed my current treatment plan and he said it hopefully the other lesions will go. He said there is no point me going on chemo until we know what the ablation and immunotherapy do. I am booked to see him for an update in July and I think I will also ask for a ct scan then to see what is happening on the inside. Fingers crossed the immunotherapy is doing its thang! I had no intention of going on chemo yet (if ever).

What I do know is that the immunotherapy jab I had last Friday is huge and very yucky looking. It’s sore and nasty looking. You can see for yourself in the picture. It’ll all be worth it if it’s working. It is clearly doing something!

 

 

Prof Harris said I have the biggest file of all his patients, especially as they are not treating me… ha ha! He seemed so very pleased and bright. He’s cool in my books.

 

I had an email from Dr Nesselhuts clinic advising me that I need to contact RGCC who made the vaccine for the EBV and to ask for it to be reissued to my home address or to the clinic for my next visit. I replied and told them they need to contact RGCC and request it. Why would I do it? They say that it is the manufacturers fault but I still feel they have to request it. Hopefully when I go in July the vaccine will be there…

 

Yesterday I had acupuncture and auricular therapy. We have been discussing the fact the lesions that are growing are mainly in my right side. My therapist says it could be the liver is stagnant. He loaded me full of needles including in my ear and I lay there for about half an hour. After I felt all buzzy and stimulated. He is such a nice guy…

Last night Pete and I had a lovely meal and overnight stay at a local hotel. We decided having ‘cheeky midweeky’s’ as I call them, are good for the soul and a nice way to keep things fresh and exciting. Then this morning we had a champagne breakfast before we got on with our days. So decadent but lovely…

 

 

 

My friends have posted on FB today that they are going to be climbing Ben Nevis this weekend in preparation for the Three Peak Challenge they are going to do for my chosen charities later this year.

Well I hope the weather improves as it has been tipping it down here today! Has the summer gone already? I only just started wearing my flip flops…

Here is their donating page for anyone that wants to support such a courageous attempt;

http://uk.virginmoneygiving.com/fundraiser-web/fundraiser/showFundraiserProfilePage.action?userUrl=Kittysclimbers&isTeam=true

 

Began immunotherapy here in the UK, what a novelty?!

Yesterday I went to The London Clinic to start immunotherapy with Professor Dalgliesh. I had finally got a date booked and all I needed to do was turn up. I arrived a little early so took the opportunity to go to Marylebone High Street to have a look around. It’s so trendy and full of cool shops and restaurants. I found a juice bar called Roots and Bulbs and on walking noticed a familiar looking person. She was waiting for her friend and asking the shopkeepers some information on their juicers. She handed over her business card to them and I knew exactly who she was. I follow a few health foodists online and one of them is known as Better Raw. Tanya Alekseeva is a Russian New Zealander who healed herself with raw food. It was great to notice this minor celebrity on the flesh. I said hi and told her I followed her. She seemed shy but really sweet. It made my afternoon!

I spent some time with Prof Dalgliesh and had to sign a consent form before proceeding with the vaccination. The nurse was lovely and explained everything to me in huge detail. I will be having a vaccination in my arm every two weeks for next three weeks, then it goes to monthly and so on. This is all dependent on how things go and if I get any reactions in between. She explained the site of entry would look like a mosquito bite. Initially it went white and raised much like the ones I have in Germany but on arriving home I notice that it looks just like a bite. It isn’t itchy, painful or anything. I am a little concerned my arm will look a sight eventually.

On the consent form Prof D wrote that this trial was to enable an immune response so that further treatment will be more effective.

I had received an email to have ablation- finally! BUT, it is at the end of the month when I have something else booked, that I really cannot change, sadly. I thought its sod’s law! I emailed Kathleen back and said I was sorry being a nightmare but I figure I have to live too don’t I?

She replied and said that she would forward it to the doctor and that they will contact me directly.

Also she mentioned that Dr Grubnic is too busy to take on private clients now so I have been transferred to a doctor at St Georges in London. I don’t mind who does it as long as they take care of me.

I mentioned my ct scan to Prof D; he said that it sounds great and that the large two tumours will be ideal for ablation. He said that he had received a lovely letter from Prof Harris, who says he supports the treatment plan and that he will be happy to organise all ct scans at oxford. That’s nice.

I do have to have blood tests prior to every vaccination so I will have them in oxford and Emma; Prof H’s secretary has agreed to email them to me.

So it all looks sort of good.

I then got a call just half hour ago from Dr Gonsalves for St Georges. He was lovely and explained that whatever we finally agree on I must be aware that I cannot go abroad for about 6-8 weeks after. He said I will certainly get a pneumothorax after the ablation.

I found this on a forum which explains what it is;

“RFA can certainly have complications, most notably pneumothorax, or collapse of the lung, which occurs in about 30% of cases, and 1/3 of those cases require placement of a chest tube.” – http://cancergrace.org/lung/2007/03/06/rfa-for-lung-tumors/ So it’s not at all uncommon.

The NIH has this to say about treatment for pneumothorax:

A small pneumothorax may go away on its own. You may only need oxygen and rest.

The health care provider may use a needle to pull the extra air out from around the lung so it can expand more fully. You may be allowed to go home if you live near the hospital.

If you have a large pneumothorax, a chest tube will be placed between the ribs into the space around the lungs to help drain the air and allow the lung to re-expand.

The chest tube can be left in place for several days. You may need to stay in the hospital. However, you may be able to go home if a small chest tube is used.

Some patients with a collapsed lung need extra oxygen.

Lung surgery may be needed to treat your pneumothorax or to prevent future episodes. The area where the leak occurred may be repaired. Sometimes, a special chemical is placed into the area of the collapsed lung. This chemical causes a scar to form. This procedure is called pleurodesis.http://www.nlm.nih.gov/medlineplus/ency/article/000087.htm

A pneumothorax is a common complication that has no implications about prognosis. It most often either resolves on its own or sometimes requires a chest tube and then resolves

 

Right, that makes it all the more scary. He said that he would ablate the two largest lesions and that the others should go on their own from the immune response being activated.

He did say that it would be under general anaesthetic and that the ablation takes 3 minutes but getting the needle in can take a few hours. I would definitely stay in overnight and the next morning have a ct scan. If it looks good I can go home, but if not then I will almost certainly be there for about four days. Gulp.

Blimey! He did say that if air keeps getting in then I may need surgery to repair it… Suddenly this is all sounding very scary!

Anyway he has gone off to look at a date and then will call today or Monday. He said that he would like to meet me before we do it. Cool… I am happy with that plan although he muted the 12th June… the date just gets later and later!

 

I don’t have any side effects of the vaccination today and am busily cracking on with rituals and normal stuff and feel very excited as I am off to London with my man tonight. Then tomorrow is special meeting… A friend I met online. Can’t wait. Whoop!

P.S I have attached the patient brochure on the immune therapy.

NPP IMM-101 Patient Brochure v5 0-1.pdf (316.75 kb)

Gamma Delta cells and Aspirin as possible cures for triple negative breast canSer

I’ve got back from my fourth vaccination session this year. We left for Germany early Sunday morning and were happily exploring Kassel near Gottingen by the afternoon. It’s crazy to think that we have only been away three days. It feels like weeks. We made sure we did as much as possible as well as using the hotels facilities. We attempted to sue their gym but on finding it was closed due to flooding we decided to go for an early morning run. Then yesterday we began our day with a swim followed by sauna, steam and salt oasis. I could manage that every day!

I feel extremely tired today though. I was flagging by the time I got back last night. BA has changed their flight times so our flight was an hour later than normal which meant we didn’t arrive home until 11pm. I’m normally ok but today I feel all a bit unsettled. I decided to give exercise a miss this morning I feel a bit like I have a lot to do or could be doing. Everywhere I look is a mess and a job that needs to be done and I feel that the house is taking me over. I would really love for it to be spring cleaned but I don’t want to do it! Cupboards are untidy and things really need sorting out. Well today in my head they do. Tomorrow they will be probably be fine again when everything is in perspective. I always feel like this when tired. I’m suffering a bit of an upset tummy too so maybe that is why I am not thinking clearly.

Yesterday was a  revelation when we saw Dr Nesselhut. He gave me my vaccination intradermally and intravenously. This is my last until I have my next ct scan and then I won’t be back there till the end of June so they can decide what to do next and if the protocol needs to be changed. Dr Nesselhut told us that he had been doing a presentation in Salzburg and wanted to show us the success of treatment he has had using Gamma Delta cells this year. It is completely new and almost trial like at present but thinks if my results aren’t as we hoped then this could be something I may have.

Ok this is where it is all technical but I currently have alpha and beta t cells when having immunotherapy but apparently gamma delta cells are amazing! I would need to get these cells from someone else like Pete and then they could be cultivated for me to have and use in order to kick cancer in the butt. Dr Nesselhut showed us images of two patients he has treated since January this year. One lady had lung cancer so severe that she was using oxygen to breath. Her image showed her lung full of canSer. Within two months of having immunotherapy using gamma delta cells it has completely gone! So far Dr Nesselhut has only used this protocol on people who have no other options. This is because it is still very experimental but he feels that he will soon have a good protocol tried and tested and says that I could potentially have this treatment too. Wow! Pete seems excited and also pleased that he would be able to help me by offering his cells.

We discussed with the doc also the news we had been receiving in the last few days about aspirin being able to prevent canSer and stop the spread of canSer. This has been explored since the 1980’s but has only just been back in the news recently for triple negative breast canSer. The idea is to use a low dosage every day such as 75-100 mg only. The doctor agreed that I should start taking this too. I am feeling like I am rattling from everything I now take but if it helps then I’m in!

http://www.sciencecodex.com/study_lowdose_aspirin_stymies_proliferation_of_2_breast_cancer_lines-110790

So much to be excited about! I’m going to attempt to get lots done today but I am really not feeling it. If it as sunny i would bask in the sun. As it isn’t then I have to get on with jobs…..

The Adventures of Cancer Maverick….

Today was reasonably eventful. Further to my thoughts of going to Germany to have TACE with Professor Vogl I had the opportunity to speak with another person who has been treated by him. Patricia peat from cancer Options gave my number to one of her patients. A lovely lady called me and we discussed all about her and her treatment. She has received 8 TACE sessions which is highly unusual as three to four sessions is usually the maximum. However, Nina needed that many because the cancer was quite advanced and already within her breast, chest, spine, liver and lungs. Phew and I think I have it bad. It makes me realise how bloody lucky I have been so far.

 

Like me Nina didn’t want systemic chemotherapy and opted for Professor Vogl. She said he is great and put my mind at rest and I thought, ‘Right I am definitely going to go and have his treatment. ‘

 

That was until we met with Professor Dalgliesh this afternoon. Prof D has been on our team since I was first told the canSer was incurable. He was the one that referred us to Doctor Nesselhut and introduced us to immunotherapy and the world of vaccinations.

 

We decided that it was about time we had a meeting to discuss what could be done and also to sound off about our recent experiences at Doc N’s clinic in the last six months.

 

We expressed our passion for immunotherapy and that even though in the last six months the tumours have continued to grow despite the vaccinations we do believe that it is keeping me well. My blood tests whilst on chemotherapy never show to be that of someone on chemotherapy! That must have something to do with that treatment.

 

I explained that TACE with Prof Vogl and Doc Nesselhut and further DC therapy was booked for the beginning of April but were wondering if there was anything in the UK we could be part of instead of having travel to the Fatherland. Prof Dalgliesh is of course the head of the Cancer Vaccine Institute and if anyone knows about vaccinations and trials in the UK it is him. He explained that there were no trials for this kind of canSer but, and this is a BIG but (I like big BUTs and I cannot lie… Ha) he did start thinking out loud. We discussed that radiofrequency ablation could be an option and quite effective in my lungs and despite the fact that blasting tumours would mean sending fragments to settle and grow elsewhere combining it with immunotherapy could actually mop the fragments up!

 

He said that he would ask the board and tell them my situation and show them my scan and hopefully I could start that in the next few weeks.

 

I asked how it would work. He said that I would need to go every two weeks to begin with then monthly then two monthly and so on. During which time I would have RFA (radiofrequency ablation)

 

Well Pete and I were all wide eyed and happy at the thought of having treatment in the UK. Whether we pay for it or not it would be load off. The pressure of travelling and being out of work and away from home is a lot to handle but of course essential if it means I can stay well.

 

Prof Dalgliesh said that I was looking great… Yes I have heard that a lot… Ha ha.. Let’s keep it that way!

 

I did explain to him that I had been having GcMAF and he knew all about it. He didn’t have much to say on the matter. He did however say that Professor Vogl is well esteemed and highly rated as an academic, not like Doctor Nesselhut who is lovely and is ground breaking but is not as academic as Vogl.

 

The thought of treatment in the UK left me reeling. What if the board turn me and I have cancelled my trip to Germany? I am obviously very aware that apart from GcMAF I am not having any treatment and technically the treatment I have been having in the past few months have not been working. I am worried that the canSer is growing and that it may spread. I am touching wood as we speak and being ever grateful that thus far it has not got further than my lungs and chest lymph nodes.

 

I am however secretly excited that I am looking to have another month of non invasive treatment (well except RFA but I can handle that!) Prof D said that if we go ahead with his idea that Prof Vogl would be a great back up. This is it then. The Plan.

 

Pete seemed really happy and I feel pretty good about it. I have everything crossed that they accept me and I can get started ASAP.

 

Whilst there we discussed other treatments and the Prof suggested that I ask Professor Harris, my usual oncologist if he can arrange for me to have Zometa infusions and interleukin2 on a regular basis as this would really help.

 

He also mentioned low dose naltrexone. I am already taking that. And actually received a prescription for the next three months from the UK distributor I mentioned the other day.

 

So all in all a great result. I now hope that I am not left hang8ing for weeks as, bless the Prof, communicating with him can take time. Something I do have but time is of the essence for me. If I want to stay well and not have any spread then I have to crack on.

 

I want to add that Nina Joy, who I spoke with this morning, has blown me away. I have been reading her blog and her picture shows a beautifully strong women. Wow, what a gal. She has written a book which has just been published. I am going to buy it. If you are interested in her story then please check out;

 

The Adventures of a Cancer Maverick by Nina Joy

 

http://www.oodlebooks.com/ninajoy/

 

Her blog is www.ninajoy.com

 

 

So once again a lot to think about but it just goes to show that the options are still there.  There is still hope too even when the disease has progressed because after speaking with Nina I now realise you can still feel great and symptom free despite having many tumours. It’s living with canSer not dying from it that counts. I intend on doing just that for many years by which time there will be a cure or at least a treatment that will mean I can live until I am old grey  with my man by my side.

 

What a lovely thought…..Night all. X

I asked the Universe for a gift…

The last few days have been glorious and as I sit here now I keep looking into the garden thinking just ten more minutes till there is no more sun left…

I have been trying to take things steady since Sunday and have laid off exercising properly. I have done some stretches and a little plank here or there with some squats thrown in for good measure.

I have been busily getting my house in order and preparing for trip… But this time it is a trip for fun not treatment. I’m a little bit excited. The Easter weekend is here and I am spending it with my man. My favourite person…

But even though things have been ticking along steadily there have been things nagging at me.

The pain in my side, I thought was healing. It is only by the time I go to bed that it really plays up. But yesterday I was in agony from about 6pm. It’s so debilitating and if this is a muscular injury, boy, I don’t want it again thank you very much! I don’t take pain relief usually as I would rather feel the pain and let it go naturally but last night I took 1000mg of paracetemol, 600mg of ibuprofen and 20mg of codeine. And even then the pain didn’t go fully. I did sleep though but awoke in pain again. Every deep breath and cough makes it hurt.

I noticed today though that the pain is directly under my mastectomy scar and it does feel tender to touch now, like it is muscle pain. But weird that it is right where the scar tissue is. Pete still thinks stress is a major factor. Its funny where we hold tension and he should know as his back goes almost every time we are due to go away.

But I guess that’s how the body manifests ‘stuff’. It’s trying to tell me something and I know what it is… patience! And that the Universe will guide me once it is good and ready…

Well I have been patient but I wasn’t going to wait for the Universe to present things to me so, in my impatience I decided that I would call Prof Dalgliesh. I had emailed loads and it seemed that I wasn’t getting heard. On calling I was met by Prof D’s secretary. She is very short with me on the phone and said, ‘Oh, you have been accepted’. What?! Yes, they have accepted you for the vaccination trial. Oh right, well thanks for informing me.

She proceeded to give me a few details of when it would start but I asked her to let me know as much as possible as I know nothing about it. She said I may be starting on the 1st may. She did try to get it on the 24th but they are too busy.  She said that even though it’s a trial and should be free because it is administered at eth London Clinic they would be charging me for every visit. She wasn’t sure of costs but would find out. She do you know anything about the trial? No! Oh, haven’t you had a patient brochure sent? Well who was going to send it to me? Anyway that has now arrived.

I asked about ablation. She said flatly that she doesn’t deal with that. Well who does? She said they should be contacting me. How? By email, letter, phone? And who would be contacting me? I again explained that I have no idea what’s going on and someone needs to help.

Once I received the patient brochure I emailed her to thank her for her time and explained that my brain was going to pop with anxiety and stress if someone didn’t help me. I got a reply saying she would email the consultant. I then got a further email to say that the consultant is away until the 22nd April… FFS. Well at least I know.

So good news I think! Well at least we are getting there. i still feel uneasy and lots of loose ends but surely this is good right?

Apparently the vaccinations will be every two weeks, then if I tolerate that well every month and so on. I will post the information regarding the vaccine once I have digested the information.

It’s funny because I am reading Pam Grouts book, E Squared and in it the first exercise is to ask the Universe for a gift within 48 hours. This is to prove that the Field of Potentiality, Source, God or whatever, exists.  I asked yesterday at 12.55pm. OK, so I had to chase the gift but I got it didn’t I? So just over 24hours isn’t bad at all eh?

One more thing… I actually have a bit of a sun tan…. I love the sun!

Phew what a weekend…

Phew a few hectic days…

Friday I had a brilliant acupuncture session with a new therapist recommended by a friend. He did auricular therapy on my ears too which was highly enlightening! It was interesting when he worked on my right side there was a definite resistance but when he placed a row of needles along a corresponding meridian the area was supple and relaxed. Amazing.

I felt great and very chilled after.

BUT then Friday night I awoke with immense pain on the right side of my chest and under my shoulder blade. It got a little worse when I breathed in deeply. I was highly stressed and at 2am awoke Pete who went into calming mode. He said it all sounded muscular and could feel very sensitive. We had tea and put the heat lamp on it. I went back to bed for a few hours before our weekend was upon us.

I was feeling particularly sensitive generally I think. That day I had news that my friend’s canSer had progressed further and it really upset me. I think more so because I haven’t had any conventional treatment and have no idea if GcMAF is working. I didn’t realise I was such a sensitive flower but your mind plays games with you.

Prof Dalgliesh had emailed Friday to say that hopefully by Monday he would know whether I can go on the vaccination trial and that he is still waiting to hear about the ablation date because a theatre needs to be booked for two hours with two surgeons.

I felt really bad about waking Pete up on Friday night as we were both so looking forward to having a lovely lie in since Pete gets up at 5am every morning for the gym before going to work.

During the day on Saturday I took plenty of pain relief to see me through. I felt fine and we had friends visit, so went for a lovely super food salad lunch. In fact it was a day of amazing food as we went to a fine dining Indian restaurant in the evening.

That night I awoke again in immense pain but kept myself calm and tried to stop my mind worrying. At one point I coughed and it felt like a sense of relief. But getting up I felt terrible. Pete said I should call the doctors and get some piece of mind but he still felt it was muscular as I wasn’t having any trouble breathing.

The GP I saw was brilliant and I had my first ever ECG! She felt I should have an x-ray as she couldn’t be sure if I didn’t have a pulmonary embolism.  What?!

We had a quick brekkie with our friends and then spent the rest of the day in Emergency Assessment Unit. After many questions, blood taking and then finally an x-ray it showed that all the pleural spaces are clear, no infection, no collapse and in fact it doesn’t appear that there are any new tumours. In fact it looked like there was almost nothing in my left lung. The right lung you could visibly see tumours in the top and bottom lobe.  Of course a ct scan is better for this but as I have one booked on the 24th April I convinced them to let me go home. They are none the wiser what’s wrong with me but they know what I don’t have. I am relieved as I am going to taking a flight this week and now I know I can relax.

The sun had been shining all day and I felt terrible that poor old Pete had been cooped up with me in doors. Luckily we got back for a few hours of sun and chilling in our blissful garden then got cracking with some work. We mowed and strimmed the lawn washed our cars and made some delicious fresh stew. But we were wrecked. We both had an Epsom salts bath, soaking for twenty minutes then we had to go to bed.

8.30pm and I was sound asleep. I didn’t wake with any pain, although I had taken a 1000mg of pain relief. And this morning it feels much better. To the point where I felt I could do some stretching, yoga and even some cheeky little squats with weights.

I have put on quite some pounds recently, which is good everyone keeps telling me. More of me to fight the disease.

I have felt fine for most of today and have a really busy day working with clients but I now feel drained and my energy is quite shaky. I have a sore throat and feel like I am coming down with something. I know it’s from stress, all bought on by myself. I have been worrying myself senseless.

The next few days I am not working as much and I plan on doing minor chores and getting ready for a trip away. But most of all taking it a bit easy.

I am always surprised with life throws at you and you can never tell what tomorrow may bring.

I kind of think that it was a good thing having this pain in my side and the visit to hospital. I know my lungs are functioning just fine and I feel even more determined that ablation is the correct route for my treatment plan.

On Saturday we had some good news via letter. Prof Harris, my onc, wrote to say he had received a letter from Prof Stebbing who has suggested I have gem/carbo regime and that I would be eligible for two of this trials. Prof Harris wrote that he thought this was a great idea and that we would save Eribulin for the future if needed. Bonus! Prof Harris had turned me down when I asked but now has changed his mind!

So if I do go down the chemo route then at least I am having what I wanted and hopefully no hair loss. I know it’s minor but small things make huge differences.

I just want to send my love to a dear friend who is starting a new regime today… she will feel rubbish apparently but it’s going to work this time!

When you are REAL you don’t mind being hurt….

Just a quick blog.
Firstly to say ‘Happy Birthday’ to Jake, I know you are reading and I know your birthday was on Tuesday but thought I would mention it on here for you…. Hope you had a great day!

 

Yesterday I finally got an email from Prof Dalgliesh. It was short and sweet, much like all the emails from the medical profession.

It said;

‘She has discussed with another colleague who feel that if you have no other disease outside the chest then this would be an ideal approach.
They will be getting back with dates asap.
They have seen responses in non treated lung deposits doing this in other patients of mine
so they are well primed.
Best
Gus’

 

I was a bit excited and also confused. What does this mean? I asked Pete if it is a good thing and he confirmed it was a great thing! We just need to know whether I should be having vaccinations before ablation and when, where and all that stuff.

So I replied with a few questions and have heard… nothing…

We also need to know if I should cancel chemo which is booked for a few weeks time.

Well at least I got some sort of reply… now do I wait another three weeks?!

 

My Bear sent me a lovely little excerpt this morning from The Velveteen Rabbit. He is such a softy. Love him.

 

“Real isn’t how you are made,’ said the Skin Horse. ‘It’s a thing that happens to you. When a child loves you for a long, long time, not just to play with, but REALLY loves you, then you become Real.’

 

‘Does it hurt?’ asked the Rabbit.

 

‘Sometimes,’ said the Skin Horse, for he was always truthful. ‘When you are Real you don’t mind being hurt.’

 

‘Does it happen all at once, like being wound up,’ he asked, ‘or bit by bit?’

 

‘It doesn’t happen all at once,’ said the Skin Horse. ‘You become. It takes a long time. That’s why it doesn’t happen often to people who break easily, or have sharp edges, or who have to be carefully kept. Generally, by the time you are Real, most of your hair has been loved off, and your eyes drop out and you get loose in the joints and very shabby. But these things don’t matter at all, because once you are Real you can’t be ugly, except to people who don’t understand.”

 

 

 

Light and Love All. X

Morning minutes are magic minutes…

Today has been an odd day. Mainly due to me having lie in. The start of a day really has a major impact on how it will pan out. I now realise why Pete says, ‘morning minutes are magic minutes’. He insists on being out of the house before 7.10am. Any time after that then the traffic is awful and a chain of bad luck events happen. This inevitably puts him under pressure for the rest of the day. In fact that’s why he goes to work so very early. Bless him though he brings me a hot drink, cuddles me till my eyes pop out then wraps me back up, closes the shutters, turns of the TV and locks the front door on the way out. I love him. He only wants the nicest things for me. But that is exactly what happened this morning. He would usually get some sort of garbled conversation out of me whilst I pretend to be listening with my eyes stuck fast. I stayed there until just gone 8am! That’s a lie in for me. I am guessing Saturday night caught up with me plus I did a good hour worth of exercise yesterday. Today my muscles ache. I think it’s from yoga more than cardio exercise. My shoulders are really aching! It just goes to show how yoga really does work the body.

 I’m really enjoying the Tara Styles yoga DVD’s at the moment. I am getting stronger. I can now actually lower myself down without collapsing. This is great as my chest muscles have been weakened since I had the mastectomy. As well as that I find it very hard to raise my right arm fully above my head as my scar goes all the way under my arm almost to my back. The knack with yoga though is working alongside your breathing. This for me is still a challenge as I find me holding my breath as I contort myself into various positions.

 Once upon a time not so long ago getting up late would have had me in a flap. I didn’t feel particularly refreshed either which I find hugely disappointing. But once up my morning flowed quite nicely.  I finished the 21 day meditation challenge with Deepak Chopra, which actually ended up being a 22 day challenge! Well actually it took me about 28 days as I kept having days off whilst away from home, but I got there in the end. I would highly recommend any of his 21 day challenges. His lesson at the beginning really gives you something to think and focus on and makes so much sense. 

 I didn’t have much planned today and have felt a bit lost…It’s crazy that we long to have less to do yet when in that position feel you should be doing more. I know there are plenty of jobs round the house and garden to be getting on with but I am flatly refusing to do garden jobs when it isn’t very pleasant outside. The leaves will still be there in weeks to come and let’s face it no one really notices do they? It’s only for me and Pete to feel better. It’s about pride of where we reside.

  I have been shopping for the list of ingredients for the meals I planned for the week. I never thought I would see the day that my shopping trolley would be filled with mainly veg and fruit and all things healthy. It’s totally refreshing and I feel good about myself as I approach the check out. It’s funny because it is hard not to look at what other people are buying. They have their crisps, dips, chips and other processed foods. Then they give me a side wards glance and check me out once they have seen the conveyor belt full of fresh foods. I hope they think I reflect my healthy choices! Although at the moment I look a right spotty mess. It must be all the sugar and alcohol or maybe it is me touching my face too much. One tip for everyone; avoid touching your face with your hands as they are naturally oily therefore transferring dirt and oil from your hands to your face clogging up the pores. Hey presto a whole loads of spots! Just what you don’t want.

 After doing my household chores… (Honestly it’s never ending and there are only two of us in this house!) I felt like a loose end. Sure enough the rest of the week is busy for me with clients and reflexology and friends coming to visit but today I feel like I should be doing more to help me and my cause out.

 I have been continuing selling the bracelets although this has had a slump in recent weeks and then I wonder what I should do next. Should I be doing more drawing, if so I want to have a plan, ideas of a theme to work on? Should I be working on more self development and things to improve my health and the outcome I want to achieve or should I be going to train as an HD brows trainer?
I want to do all of the above but I am not sure when……My health is good and as long as I am taking chemo, having immunotherapy and focussing on my rituals every day then I think I am doing the right thing. I don’t feel there is any avenue I haven’t explored and I don’t feel that I need to go for any more therapies where I need to research my sole and let go of old stuff that clogs up my mind. I think that right now I am in a good place. I feel balanced in my mind and heart. To be honest I really could do with some bright daylight and start getting out in the open. I feel I am lacking fresh air and vitamin d… Ok I am taking enough vitamin d3 but you can’t beat the really thing and I like pottering in the garden and I honestly think that maybe right now doing more training and taking on too much work could interfere with having a good summer! I know naughty eh? Lazy, cheeky or sensible? I think the latter. I am feeling well therefore I want to make the most of it and as long as the Earth catches up and we get a summer then I think I should really enjoy it!

  Living for the day really makes you forget everything you would usually feel guilty about.  I have already dumped the negative feelings that I had because of drinking too much alcohol and eating too many cakes last weekend. I don’t think about running around like a headless chicken anymore as I know everything will get in due course if it is meant to happen. I want to update my mood board but I don’t think I will do that now until it feels right. And when I do change the mood board I know I will feel really good about it but now is not the right time. Now I come to think of it there is so much I could be doing to enhance my life. I want to learn how to cook more….. That takes some organising for me as it doesn’t come naturally. Ok on my mental list of things to do…

 Here is today’s research:

 Chloroquine anti-malaria drug kills autophagy-addicted breast cancers

  The process of autophagy cleans cells – they wrap up the bad stuff and then dispose of it. And so it stands to reason that inhibiting autophagy would make cancer cells less able to cleanse themselves of chemotherapy and so more susceptible to the drugs. That’s what the traditional anti-malaria drug, chloroquine, does – it inhibits autophagy. Existing clinical trials are testing chloroquine/chemotherapy combinations against breast cancer.

 Research presented at the AACR Annual Meeting 2013 shows that some breast cancer subtypes depend on autophagy more than others – and that inhibiting autophagy in breast cancers that depend on it may be enough alone to kill the disease.

 “When you inhibit autophagy either with chloroquine or with genetic switches, you see that some breast cancer cells don’t care. Some are only moderately distressed. And still others just die straight away,” says Andrew Thorburn, PhD, deputy director of the University of Colorado Cancer Centre and senior author on the study with first author Paola Maycotte, PhD.

 “Ultimately what we’d like to do is use this as the basis for a test to identify tumours in which autophagy inhibition is most effective. You find out what a cancer needs and you take it away – this is the model of modern, targeted therapies,” Thorburn says.

 With or without additional chemotherapy, identifying breast cancer and other cancer subtypes that are especially addicted to autophagy and so especially sensitive to its inhibition could allow an old drug to be used in a new, powerful way. For example, this study identified two likely sensitive breast cancer subtypes – basal-like and claudin-low – both of which are highly represented in aggressive, triple-negative breast cancers. The survival of triple-negative cells depends in part on the activation of the STAT3 gene, which is regulated by autophagy. It’s likely that inhibiting autophagy in these cells blocks STAT3 activation, which in turn results in the death of triple-negative breast cancer cells.

 “There’s more lab work to be done,” Thorburn says. “For example, we’re just finishing up work with autophagy inhibition in primary xenografts – taking the work from cells to mouse models. And other work presented at the conference by graduate student Rebecca Barnard is exploring when in the cell cycle is the best time to inhibit autophagy. But this is an especially exciting line of reasoning. What Paola’s data suggest is that for some breast cancers, just inhibiting autophagy may be enough to successfully treat the disease.”

 Source: University of Colorado Denver

 

Omega-3 fatty acids more effective at inhibiting growth of triple-negative breast cancer

  WASHINGTON, DC (April 9, 2013)—Researchers from Fox Chase Cancer Centre have found that omega-3 fatty acids and their metabolite products slow or stop the proliferation, or growth in the number of cells, of triple-negative breast cancer cells more effectively than cells from luminal types of the disease. The omega-3s worked against all types of cancerous cells, but the effect was observed to be stronger in triple-negative cell lines, reducing proliferation by as much as 90 percent. The findings will be presented at the AACR Annual Meeting 2013 on Tuesday, April 9.

  Omega-3 fatty acids are found in oily fish like sardines and salmon, and also in oils derived from plants like hemp and flax. Previous studies suggest these compounds can negatively affect critical mechanisms in cancer cells, namely those responsible for proliferation and for apoptosis or programmed cell death. Lead author on the study Thomas J. Pogash, a scientific technician in the Fox Chase Cancer Center lab of Jose Russo, MD, says the new work underscores the important role common compounds found in food may play in keeping cancer at bay.

 “Diet can play a critical role in breast cancer prevention,” says Pogash. “When you compare a western diet to a Mediterranean diet, which has more omega-3s, you see less cancer in the Mediterranean diet. They eat much more fish.”

  Breast cancer is a heterogeneous group of cancers comprising diseases that differ on the molecular level. Patients with different types of breast cancer respond differently to treatments. Four distinct categories of the disease are generally recognized. Two of those, luminal A and luminal B, grow in the luminal cells that line milk ducts in the breast and have receptors for estrogens and progesterone (prognosis is generally better for patients with luminal A than with luminal B). A third category includes tumours that test positive for the HER2 receptor.

 Russo notes that no targeted therapies are currently available for patients diagnosed with triple-negative breast cancer. Combination chemotherapies are the standard of care for early-stage disease.

  When a cancer cell digests omega-3s, the fatty acid is broken down into smaller molecules called metabolites. Russo, Pogash, and their colleagues tested the effect of large omega-3 parent molecules, as well as their smaller metabolic derivatives, on three luminal cell lines and seven lines that included basal-type triple-negative cells.

  Omega-3 and its metabolites were observed to inhibit proliferation in all cell lines, but the effect was dramatically more pronounced in the triple-negative cell lines. In addition, the metabolites of omega-3 reduced the motility, or ability to move, by 20-60 percent in the triple-negative basal cell lines.

  This study is part of a consortium between Fox Chase Cancer Centre and Pennsylvania State University under a five-year grant awarded by the Komen Foundation. Russo is the principal investigator of the project at Fox Chase. Andrea Manni, MD, leader of the Pennsylvania State University team, has extended this work to animal models, studying the anticancer effects of omega-3s and its metabolites on mouse models of triple-negative breast cancer.

  Russo and his colleagues are working on two related projects, one on the role of epigenetic events in the mechanism of cell transformation and another on the potential action of peptides of the hormone human chorionic gonadotropin (hCG) on breast cancer prevention.

That’s amazing…All the more reason to eat fish and flaxseed then I guess and if you really do not want to eat it then get a vegetarian supplement!

Tomorrow I have an afternoon of clients again. It hasn’t taken long for the word to spread and I have been getting messages all day from people wanting to book…. Exciting!

Light and Love. X