Are you bored of me saying what a great nights sleep I had at the Zum Lowen hotel?

Are you bored of me saying what a great nights sleep I had at the Zum Lowen hotel? Ha ha…Oh well…. I did! Last night was an epic nights sleep….  So much so that I woke up with the puffiest face and eyes that I have ever had! My first appointment at Dr Nesselhuts clinic was at 10am when  I was told that my bloods were fine from the lab tests. Phew…  That’s good news. I had many, many vials of blood taken so that they can be frozen  by the lab and used for future dc vaccinations.

Then I had hyperthermia followed by a Newcastle disease virus jab.
In between appointments Pete and I killed some time then returned for the vaccination.  We saw Thomas’ son Jan this time.  He is just as lovely as his dad and seems to really know his stuff too.
He was pleased with my recent scan results and proceeded to discuss nivolumab.  He explained that unlike other antibodies and vaccinations which tend  to leave the body within about two weeks,  nivolumab has a half life of about four weeks,  so when I have my next infusion of nivolumab there  will still be a residue in my body therefore making it accumulative.This is classed as a good thing. He also said I had about 1mg per kg of weight.  The usual amount would be 3mg but they like to wean you onto it to ensure you don’t get too many side effects.

Plus, it would cost a fortune if we had 3mg per weight!  Then Jan dropped the bombshell… He said that because nivolumab affects the immune system I could get an auto immune disease.  That means any organ or system in the body could be affected. If affected then  I could of course die from that auto immune disease.  Er….. Brilliant. But it’s ok because if I get any symptoms or illness then I could be put on strong steroids like cortisone or prednisone to stop the disease. So yesterday when I was pleased that there wasn’t any side effects and how nice it would be to actually receive treatment without any pain or misery…  I was wrong. Life is so full of Yin and Yang! I wish he hadn’t told me.  I don’t want to think about the possibility of getting arthritis, failed organs, or anything really!  I just want to be healthy and happy- CanSer free! Well as I type this sipping on my mint and lemon hot water I just think to myself, ‘what’s the worst that could happen?’
Right now I have a choice. I’m already taking a leap of faith. I am to try out this combination of nivolumab and dc therapy for three months and then scan to see if it’s working.  The worst outcome is that the canSer grows and spreads.  The other baddy is that I get sick from the side effects and get too ill and die.

For melanoma, nivolumab really is a game changer so let’s hope it works just as well for us TNBCers. I must point out that the trials for nivolumab in the UK are totally different to  what I am receiving as I am having immunotherapy as well. The other choice is I go straight back to Prof Vogl and have TACE and do what has been working recently. I never know what’s for the best. I can only react to symptoms. That’s the best way forward.  So I am going to be alert, live healthily and just plough onwards and upwards.  I will ask for another scan in about two to three months and continue to have my bloods done every few weeks. I am still having denosumab for my bones and will continue with my supplements and medication.  We left the clinic with plenty of time for our flight. As usual the weather turned nasty.  We had a torrential downpour of hailstones.. It’s actually getting funny now. We arrived with plenty of time for our flight though… Four hours to be precise!  Shame there wasn’t any earlier flights we could have slipped onto.

Looking forward to my own bed. Let’s hope I sleep as well as I did last night..
Xx

Deflated and unsure…

Pete and I went to bed early last night. So early we had about 11 hours sleep! Boom! I love the Zum Lowen’s beds. Dragging myself out of the warm and comfy slumber this morning I scooted to the clinic to have my bloods drawn ready for up and coming visits. I was due to return at 11am for the next hour long treatment but as they had time I had it all done at once.

I had a chat with the nurse whilst lying there. She was telling me how much easier things are now.e asked if I remembered last summer with all the Portuguese patients. Do I? Boy yes. It was so busy and many mistakes were being made.

I asked why it wasn’t as busy now. She said it had calmed down since people had started abiding by their appointments. She said that for a shirt while people would stand there at the counter demanding an appointment. They had travelled from Portugal without having an appointment and cry until the doctor saw them. It’s amazing what desperation does to one. The staff would start at 8am and finish at 8pm. I guess that’s busy over there.
Thankfully peace had been restored.

An hour or so later we met with Dr Nesselhut who was lovely as usual and this time had a doctor from Amsterdam sitting in with us.

We explained again the scan results and he seemed concerned by the necrotic ones that were active in my lymph nodes. He said that he would like/expect no changes so if the next scan still showed a lot of change then we need to let him know so that he can change our protocol. Pete mentioned the fact that I’d had head/neck ache for sometime and Nesselhut insisted on getting it checked out by way of bone scan. He said it is probably nothing but better to be sure… Not what I wanted to hear.

Pete also mentioned my cough and explained Prof Harris’s thoughts on it. Nesselhut was less concerned but suggested codeine at night… Not sure why.

A lot of conversation was banded about things that could be done and what was inbound. He talked a lot about anti pdl1, pd1 and more. We said we thought I had already had that. He said in the vaccination, yes, but not injected directly into me. He said the quantity required would result in the cost of £100,000! He suggests it works better because when administered in the vaccine we are just training the dc cells, whereas administering it into the body, it attacks the protein cloaking the canSer and therefore has a much better response. They have high hopes for this.
Pete not knowing the price asked when we could start that treatment. Nesselhut said not yet then told him the price….. Jaws dropped. Let’s hope I don’t need that then!

Whilst chatting about triple negative Nesselhut said that they had amazing results for those who had not waited till they metastasised for dc treatment.

He says the success rate for those who have the treatment is 100% over 5 years. If only I knew about his work before the canSer had metastasised.

For someone like me he said there was a 30-40% success rate over 5 years… Well I guess that’s me in that 30-40% then!

This is great news for any TNBCers out there. It isn’t the worst thing ever to have that diagnosis and despite needing funds if you can obtain them, then go for it. It’ll save your life.

I had my vaccination intradermally and intravenously. My arm is currently as big as a balloon. The biggest reaction yet. I feel fine. I am longing to be at home but then who doesn’t when you are sat at an airport.

Thoughts have worried me this afternoon. I guess if I am being ever alert then I know in my gut that I should get my headaches checked out. If I am being less cautious then I want to wait.  I have neck ache. It feels like I need a bloody good massage. The thought of having an MRI scan fills me with dread.

Whilst having a green tea this morning I suddenly felt sick and had to rush to the loo where sadly I vomited. What caused that? Don’t know….

Last night I spent a little while trawling through FB, as you do. I saw a post on The Huffington Post. I’m not one to follow blogs, bizarrely enough on other canSer survivors, but this one caught my eye. I read it to Pete and we both cried. Not wanting to ruin it for you, the outcome isn’t all happiness and joy but the power of the internet has meant her post has gone viral and her husband has written to thank everyone now that she is gone. I’m reading far too many posts of late of women dying before they are 40, not just of breast cancer but bowel cancer and more.

Here’s a link to Charlotte Kitleys’ final blog that she wrote before she died : HUFFINGTON POST

Followed by her husbands reply; Well, it’s not quite the end…

I don’t think Charlottes’ post was all doom and gloom but full of love, hope and happiness. I will take her advice and run with it.. I advise you to do the same.

Night all. Hopefully I’ll be home soon tucked up in my favourite place with my favourite person plus the little furry one.

Xx

Side effects again dominating….

Last night I had the second il2 injection of round five. I tell you, the side effects get worse. By 8pm I had full shivers and felt rubbish. I gobbled up paracetamol again but they didn’t have the same soothing effect. I went to bed in a pickle.

Thankfully though I did kind of sleep. I slept on my back all night so I know I didn’t properly sleep but at least I felt rested this morning.

The cat was very happy though. She snuck in before we shut our bedroom door and she slept on or right up close to me all night. At one point I heard her drinking from my glass of water on my bed side table! Lucky I didn’t need any then! It must have been a cold night, that’s all I can say, because the temperature I was kicking out must have been up there. I got out of bed this morning very red faced and felt urgh…

It took me hours to sort myself out this morning. I have also been struggling taking my supplements and medications. I am not sure if it is a mental block but I really am off green juice and supps combined. It’s so weird how things change. Only a few weeks ago I really felt that taking my supplements whilst drinking my juice was a great combination. I felt energised and at ease. Now I regurgitate every time I try to take them. Even my reishi powder and oil made me vomit. It’s so unlike me. Thinking about it now is making me get all watery in my mouth. That’s a bit of a pain as its time to have my evening round of meds and juice.

Today I have been organising for going away. I have been trying to get last bits of washing done and cleaning the house so it’s nice for our return. I have also been emailing doctors and organising appointments for when I get back.
I emailed Prof D regarding getting a prescription for mebendazole. He has referred me to another clinic that uses it and says they should be able to sort me out. I contacted them and they say they would be able to help. Yay! But I need to have a consultation and then a follow up appointment costing £400 and £200… Boo!

I feel quite excited about being away. I want to spend some time thinking about the next quarter of our year. I am nearly finished with the health coaching course and I have plans to get in order. I want to have some new goals and feel fired up and ready to go.

One of the lads that did the Colour Run with me at the weekend has made a video. This really cheered me up today… I hope you like it…

Sad news……

It’s amazing how one nights sleep can solve so much. I feel less emotional. I don’t think having female monthly hormones helps but even so I’m less tearful for no reason. Our tempers are less flared and things don’t seem quite as bad as before. Sleep affects the metabolism and appetite too. Cortisol levels rise and sit round the fatty areas such as stomach.. Sleep has a lot to answer for but it has to be the right amount. I should be an expert in sleep! Ha ha!

After a marathon sleep session I headed off for treatment and within an hour had had it all. The rest of the day was ahead of us so we decided to use the hotels facilities and try to relax further.

We began by exercising as not only is it good for the body but it’s good for the mood. I know I worked out enough because today I am aching!  We had a swim, steam, sauna and finished off in the salt oasis.

We bought food from a local supermarket and had a hotel room picnic because the weather has become Armageddon like.

Tucked up in our pj’s we watched an animated movie and yet again I cried!

I’m such a softy…

Whilst sitting whiling away the time we got news…. Sad, sad news that health and wellness writer Polly Noble has died.

I have been following Polly for some time since she was recommended to me because not only was she a health advocate but she also had canSer. She had canSer from the age of 24 years old. She died at 32 years old. She had done so well during that time frame by beating it twice by simply eating well. But then it came back and in the last year it had spread to her lungs. Her primary diagnosis was cervical canSer.

In the last six months I had been emailing with Polly because she had decided to travel over to Germany to see Dr Nesselhut. I advised her on what to expect, how it worked, where to stay, what to see, and more. She seemed grateful but had complications from her very first visit. I hoped to see her out here but found out we would just be missing each other. I am going home when she was just arriving.

I said to Pete yesterday, ‘It’s a shame that we are missing Polly’. Pete says it’s almost as if I knew…

We had arranged to skype on my return and then we were to meet in June. I had emailed her a list of information of things I am currently doing along with info on Prof Vogl and more, for her to get stuck into until we spoke. She seemed so upbeat but did say she was having trouble breathing and was clearly feeling ill.

Polly’s mother emailed me last night and said how heart broken they are and that Polly had died on Sunday.

Her mother emailed me and said how heart broken they are.  She had got news on Wednesday of a ct scan that showed her liver was filled with tumours when only six months ago it was clear. Her mother said she felt weak and tired and just couldn’t fight anymore. I feel gutted to say the least. She gave it her all. My love and thoughts are with her family and friends. She was such a vibrant soul and I hope that lives on.

 

I have just got back from my second round of hyperthemia, zometa and interleukin 2. I return for my vaccination in a few hours.

 

Life is so weird how things change by the flip of a coin. Polly wasn’t to know that this was her last few months so it makes you wonder why do we worry. Would’ve knowing made any difference at all? Would she have done anything differently? Probably not. Yet again, I simply think one has to live their life and take every day as if it’s your last. Be grateful, love one another and hold onto what you believe in.

Oh and if you can find a Bear that you can hang onto and who will make you feel safe in your hours of darkness.

 

Light and love as always….

 

C X

Is it possible to have too much sleep?

 I’ve had another mammoth night’s sleep and as usual Pete gets up at the crack of dawn and goes to work making sure I’m all still tucked up in the dark and warm. It’s making it really hard to get up. Yesterday was just weird. I felt exhausted but for no reason. I still managed to get things done but it didn’t flow. I struggled again to get going this morning but managed to blitz exercise, yoga and meditation followed by heat and air. I’m not sure why I feel like I do at the moment. I love have loads of energy and feeling really excited about everything. Part of me wants to laze in the sun and the other nagging parts wants to get the cabin creosoted and the bench painted and the house repairs done. But I simply don’t seem to have the energy or even the need to get it done. I keep thinking that if I leave it today tomorrow I will feel better. I can’t actually decide if I am sleeping too much? Is that possible? I think it is….. But I remind myself that I need to exercise more as chronic tiredness can be overcome by acute tiredness.. Or is the other way round?! Well I know what I mean. Exercise will get rid of this terrbily sleeping feeling…. I need more!

I’m going to working this afternoon so that normally wakes me up, then I am going to be making yet more bracelets. Can you believe it? Donations have slowed right down naturally but I am up to £5623. I reckon we can get to £6000.

 Some more research coming through on Google alerts are from the Galapagos. It is a bit difficult it explain so here is the link to read more about it.

http://online.wsj.com/article/PR-CO-20130422-900241.html?mod=googlenews_wsj

Going back to Dr Nesselhut on Tuesday he said he expects and hopes for me to live a natural life span but really hopes the disease will go completely. Me too! Those little comments stick in mind. But I feel more and more positive that I am going to be fine. I can honestly belive that I will completely be free of canSer. I think I am already getting a bit twitchy knowing the next ct scan is only in two weeks……

ONwards and upwards….I’ve decided I need to update my mood board. I want to add that I will learn to speak German. It has to be done with the amount of visits I have been and will be making to the Fatherland. Also Pete is fluent in German so it is only right that I make the effort. He translates everything for me at the moment and that just makes me lazy! I learnt French at school so I am finding it a tad tricky.

It seems one of the many destinations on my list of places to visit will be crossed off soon! Pete has planned to take me away for the weekend as a surprise but accidentally told me where it is…Rome! Whoop”! I’m very excited. Poor Pete was gutted that it slipped out but it doesn’t bother me knowing. I don’t know where we are staying so that is still a surprise. Molto eccitato! That’s very excited in Italian!

It’s already Friday tomorrow and the week as usual has flown by. We will be spending our afternoon with Ray. He is 90 years old tomorrow! I honestly cannot believe he has made it this far with all his illnesses and hospital stays but he is stronger than ever and bright as a button. I decided it would be cruel to get 90 candles for his cake so have bought s a 9 and a 0 candle. Bless him.

Then the weekend will be upon us when I am taking a trip to the seaside. Brighton to be exact. Never a dull moment for us! Can’t wait to see old friends. (Really old friends from when I was at school!)