Hi. I've just heard my mum has what sounds like the same type of cancer. She's in the early stages of working out at what stage it's at, before the treatment plan is decided upon ie immunotherapy, RT or CT. I'm wracking my brains to see how I can support both my dad and my mum as the days go on. Reading through some of the posts on here is quite inspiring. I hope whatever I find out I can share and may be of help to you and your Dad. 

I have advanced metastatic prostate cancer which has spread to my lymph nodes and bones.

I was initially told I would have around 5-10 years, and I kind of accepted that thinking well, new treatments are coming, if I can try to do what I can in the meantime, something will come along. But this changed to 3-5 years after my biopsy as it is an unusual and aggressive sub-type and I thought "No - I'm not having this" and started to research everything I could find.

What I found were very potent sounding treatments, one of which was CIK Immunotherapy. Problem: I could not find anyone doing this in the UK. My Oncologist didn't even know what it is!

However, I found it in China at a high but reachable price and had it in December.

The only side effect appears to be fatigue, but my Chinese doctors are confident that it will work for me.

CIK stands for Cytokine Induced Killer cells. Simply put, they take some blood from you, manipulate the white cells so that they lock onto and kill cancer cells, and then multiply them into the billions in the lab and then infuse them into you in a saline drip. Completely painless and, as I say, almost side-effect free.

I guess it remains to be seen how effective it is, but my Chinese doctors, whilst not promising a cure, have told me that I will certainly have very much more than 5 years (from a cancer perspective at least) and, I can go back for more if the cancer reappears. 

Please explore Cryotherapy and Nano-Knife therapy too ..... they might offer help.

Hi Davek,

CIK is used in China for Lung Cancer.

The problem with asking your Oncologist about CIK Immunotherapy is highlighted in my post above - they may not even know what it is. Even if they do, they cannot offer it.as it is not available on the NHS.

The cost of going to China for CIK and Chinese medicine combined is probably about £12k (plus air farre). This is a lot of money for most people, but crowdfunding might be a way forward - if the Chinese doctors think it will help.

The many plusses of it are:

1. It is no longer an experimental therapy (despite what you might be told here) It is in common use in China and other places, so they now know the risks and how to do it.

2. It is virtually side-effect free, so it beats Chemo and surgery by a country mile.

3. If they give you Traditional Chinese Medicine (TCM) too - you feel a million dollars.

I am speaking from my own experience.

I just wanted to flag up that the term immunotherapy is an umbrella term used to describe a number of different aproaches that iether manipulate the bodys immune system to treat cancer or use substances called monoclonal antibodies which are also part of our immune system.  There isn't a one size fits all approach for immunotherapy for all cancers and although there have been amazing results in some cancers with various types of immunotherapy, eg melanoma there is still a lot of research to be done.

I would always recomend that anyone considering going abroad for any treatment talks it through with their doctor first, in many instances there will be a treatment available here that is either as good or there is stronger evidence base for.

Martin

Hi LedZepFan,

For some reason your original post wasn’t displayed on my screen when I posted my own reply. 

It sounds like you’ve had an interesting experience - I hope you get the outcome you need. 

A friend had some good results with nano-knife surgery. 

Best wishes

Dave

My husband was diagnosed with mesothelioma last June.  He went through 6 rounds of chemo and now, at disease progression, has been offered an immunotherapy trial.  It is of course, randomised 2:1 with placebo, which is very scary.  We have investigated going private and have been told the cost is £50 - £80,000 a year.  £12,000 for a trip of China sounds comparatively very cheap.   How would we go about finding out about this.  Any advice would be very helpful.  Thanks.

Hi Jayne,

Sorry not to have replied before, but I missed your post.

The Immunotherapy i have is not the same as is being offered to your husband. What I had is called CIK immunotherapy - please look it up to understand it more fully, but in outline it is a treatment where they remove some of your own blood and separate the white cells. They then manipulate the white cells to specifically attack cancer cells, then they replicate them in the laboratory and multiply them before injecting them into the patient. Effectively, they have created a fleet of hunter killer submarines that are out to get cancer cells.  CIK stands for Cytokine Induced Killer cells and they work by locking onto the T cell receptors on the cancer cells.

It is almost side effect free (in my case just some fatigue for a couple of weeks or so, a couple of weeks after treatment).

My NHS oncologist is astonished at the results.  My tumours have shrunk to the point that they are almost invisible on the latest scans.  My Chinese doctors have suggested I return for a second cycle of treatment just to be sure.

My first round of treatment cost £12,000 plus air fares (to Beijing)  - the second round will cost me about £9,000 plus air fares. But that's it - cured.

Feel free to ask me for more information, I will help in any way I can

The hospital is truly superb, modern and fully equipped and all of the staff from the Doctors to the cleaners are extremely knowledgeable, skilled and charming people.

If I can help further, please let me know.

Martyn