An appointment with Prof D….and has spring finally sprung?

Bear and I decided it was time to have an appointment with Prof Dalgliesh. It has been more than a year since I have seen him and although I do email him updates he is a busy man and probably doesn’t really remember everything that is going on with me. The reason for going was to see if there is anything new, and to see if he could fill us in and maybe point us in the right direction with regards to all the news and publicity regarding immunotherapy and genetics.

As always the meeting was brief (but expensive) however it was good to see him. He seemed genuinely pleased to see us and more so considering my diagnosis over the years and remissions and progressions and so on. For someone who has had it for six years, in the breast, brain, spine and lymph and lungs at all different stages and size with and without symptoms. He seemed pleased with the treatment that I have had and am continuing with especially as he recommended I see Dr Nesselhut in the first place. He did know there are changes for his German friend regarding Newcastle Disease virus and whether Nesselhut will be able to continue using it or not. But nothing more than that really.

We discussed how useful Newcastle disease virus is for some and although I have never had remission using it we do feel that that it is working on some cells in my body and that is why I am stable and healthy. He said that there is probably a residue or build up of NDV in my system so not going to see Nesselhut as often isn’t a problem. Dalgleish also endorsed the use of nivolumab and ipilimumab. We asked if we could have them over here now. He confirmed that both drugs are licensed for use here but are probably more expensive to be treated here because of having it administered at a private clinic. This I am to find by calling a clinic he has recommended in London.

He did say that Newcastle disease virus is obtainable in Holland and will try to find a contact for me.

We came away a bit underwhelmed as always. We never feel we really got much out of the meeting until a later date when a little gem appears. But for now we are back in his thoughts so maybe he may consider me when thinking about treatments.

 

Today is a beautiful sunny and crisp day here at our ranch…Haha… The cat is asleep somewhere, the neighbour’s dog is chasing bees and I have been sitting on the decking having some oolong tea. As normal my hands are freezing but my pelt/furry bonnet has some heat on it. Lovely….My hair is now at a length that it really could do with a trim around the ears but not long enough to look cool.

I had a letter this morning form the hospital telling me the pain clinic appointment I had in July has been bought forward to a few weeks’ time. Apparently my oncologist (good old Prof Harris) has asked the pain team to see me sooner. I am so grateful.  For a while I thought well I don’t need it but this week just proves how quickly things can change again.

The niggly cough caused by irritation from the microwave ablation hasn’t subsided but actually seemed to rear its ugly head more. This has caused the pain in my ribs to travel under my arm and is really sore to move and caused some spasms around my neck, to the point where I couldn’t turn my head! Argh… stupid body.. Well there was a plus side. I got a massage from the Bear and after a good night’s sleep the pain in my neck had relaxed slightly. It’s much better today although when I cough or sneeze I could go through the roof with this weird pain.

 

Tomorrow I have my mum visiting and then we are off to good old London town for a girly trip to celebrate a belated Mother’s Day. I am hoping the weather stays bright all weekend so that I can venture into my garden to actually do some gardening. I am sure my mum will be well pleased with those plans! Ha!

I am wrapped up in a big polo neck jumper and I have a fresh pot of tea ready… I am off to enjoy the last rays of the afternoon. Don’t forget the clocks change this weekend!More light in the evenings… Yay!

Light and Love. X

 

 

Returned from Germany with changes afoot….

My mission currently is to stay healthy and to get fitter. That is why I now go to a personal trainer for a few half hour sessions to motivate me and distract me on days like today. I have no reason not to feel chipper but I feel tired and sluggish which is probably due to treatment in Germany on Monday and Tuesday.

Fitness is the key. It keeps us well, it’s social and can make one believe anything is possible. Last Sunday Pete and I decided to have an exercise session to start the day then we went for a long walk (or climb as I like to call it!) to White Horse Hill. Boy that was steeper than I expected but it felt great to be up overlooking the fields and breathing in the fresh air. I am trying, really I am. I know it’s my head more than my body that stops me. But as I have been told, I have to allow days where I am not bouncing with energy.

Todays’ session was great. In half hour I did some tai chi moves to warm up, some pilates moves to work my core. I used one of those funny half ball things to balance and jump whilst doing squats and lungs, I twisted whilst using a medicine ball and some! I now feel great, satisfied and pleased I made the effort.

 I had treatment at Dr Nesselhuts’ clinic at the beginning of this week, but things are changing. It seems that the pharmaceutical companies are now taking control over the doctors. Nothing much to be said but there are changes to my treatments and the future is uncertain there. It’s the first time in a long while, I have come away without having booked my next appointment. Who knows what will happen?

The treatment I did have has sparked a response in my arm as usual, and is swollen and itchy and a little lumpy in places. It will probably be gone by tomorrow.

I have contacted the hospital to ensure I have my next CT and MRI at the end of April, making it three months since my last scans. Pete also felt it is now time to see Professor Dalgliesh again. It’s time to discuss what has been in the news regarding the breakthroughs and the genetic treatments available. I have also contacted the Dr who suggested genetic profiling a while ago to see if that something that would help me with potential bespoke treatments. As well as this I wondered if now I would be able to have laser treatment with Prof Rolle, a well know thoracic surgeon. I have contacted him and he wants me to send him details and scans so they can consider it.

This is all assuming the next step. I am not being pessimistic but I have to keep one step ahead. We know that Dr Nesslehuts’ treatment doesn’t cure me. Last year and a few years before I still had progression despite his immunotherapy but I do believe that his treatments keep me well and who is say it isn’t keeping the tumours stable as they have been for some time now, especially the brain.

We do know Prof Vogl’s treatments do have an impact on the tumour sizes but I am hoping that the ablation I had in January really is going to send the larger tumour in my right lung packing.

Not forgetting everything I do at home. It all counts. Pete and I were saying the other day, wouldn’t it be ironic if it was the DMSO injection that costs £25 that is doing the trick or what if the supplements I take now are the one thing that is working?

That, we don’t know, and that is why we have to keep searching and moving and staying alert. But bloody hell, just give us a break. That is what Dr Nesselhut said to us too. He said you need to live, so having a few months until the next scan and treatment is good. And it is good. I know that and I am not going to waste my time worrying as we all know worrying is wasted energy.

In the last few days my ribs are hurting more. That bloody cough still hasn’t gone. I feel I am doomed to harbour this annoyance forever more! (Dramatic enough??) It just proves the irritation from the ablation is still there. But laughable that I have to wait until July to go to the pain clinic to try to stop the pain in my ribs! That’s the only appointment date I could get for. Ho hum…..

Easter is around the corner and holidays, hopefully, to plan for. Time with my love and loved ones. Making memories.

Love and Light.

 

XX

 

 

Plodding along nicely.. and it’s March already!

It’s March already! The evenings are staying lighter for longer and everyone seems a little more optimistic despite the heavy rain and winds and now a threat of snow.

Most days pass by quickly and I continue to wonder how did I ever fit working in? I have to admit I am a sleepy kitten still. Last weekend we made a pilgrimage to see our friends in Ireland. We don’t do it enough but there’s probably a reason. We came home tired from late nights chatting and having fun, making memories and ate a little too much and drank far too much! Haha…

With sadness we came home but not for long as we have plans in the summer to look forward to.
Our kitty meowed loudly when we walked in the door and has ever since followed us around. Our dysfunctional cat. Doesn’t like being touched and everything has to be on her terms. I love her with all my heart…. Funny little animal.

This weekend is Mother’s Day. I have plans in a few weeks for my mum but it struck me how hard it can be for so many woman suffering any kind of canSer who has had that opportunity of being a mother taken away from them. Now I am not feeling sad or ‘poor me’ about it. I certainly am not, in one respect, as I have step children (and a step grandchild! Can you believe it?! I am far too young. Haha) But I never had the opportunity to have my own. Bad timing is to blame and even if I got the all clear, I am now too old. My body doesn’t want to work as I have not had any monthly cycles for well over a year. That’s what chemo can do for you. My body is all confused!  I will never experience that unconditional love and warmth and the feelings of having my own child but instead I will cope with my fur baby. Poor kitty! Haha!

Life, this week is plodding, along nicely. I have been for one training session and felt so tired from the weekend, I was embarrassed at how little energy I had. But a good night’s sleep should never be underestimated. I was different woman yesterday. I went to a yoga class and came home with aching butt cheeks. That’s what I call a good yoga session!

My health seems pretty good. The cough is there, on and off, but I feel that the lungs are improving. I am feeling confident in myself. Next week we go to Germany for treatment with Dr Nesselhut again. It will have been 8 weeks since my last session with him. I feel a sense of relief knowing that there is more treatment inbound and that I should essentially feel quite well afterwards.

The focus for the next few months is to get strong and fit and with the longer nights Pete and I will get even more active going out for walks and training in our gym room. I am liberating more space by getting rid of some furniture to ensure we can train as much as we like.

There is always plenty of research popping up for potential treatments for triple negative breast cancer. Immunotherapy is still very much in the forefront of the news. I always want to point out though that I don’t rely just on immunotherapy. I combine all treatment. Right now I am not on chemo of any kind but I have had surgery. I do continue taking supplements and doing every element of the ten point plan.

I even got a call last night from a journalist whom did an interview with me in October 2013 and they are considering bringing that story back out again and dusting off the cobwebs by adding a few more up to date details on my current status. I did give them details to say that since then things have gotten worse and better. I think people just assume that you treat the canSer and then it goes away. With metastatic canSer of any kind it may never go away. Mostly it doesn’t for the lucky few it can. So I hang on to the hope that one day (soon!) I will be living proof of that.