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)

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