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

Leave a Reply

Your email address will not be published. Required fields are marked *