Support4linda
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For those of you who don’t know me, I’m an ordinary person, just like most of us. A wife, a mother of three gorgeous boys, a sister and a friend. Life was good, very good, until in May 2013 I found a lump in my left breast and my world turned upside down.
This is my story…..
In May 2013 I was diagnosed with HER2 positive breast cancer. This type is less common (20% of all breast cancers) and is more aggressive, as it tends to grow quickly.
I was offered chemo, surgery and radiotherapy. As a reflexologist I’ve always been into natural and complementary therapies so having chemo didn’t sit well with me but I agreed to it and had 6 rounds. During this time I could feel the lump growing, but doctors assured me it would get smaller. It didn’t.
I had surgery in Dec 2013 followed by radiotherapy and continued on Herceptin (a monoclonal antibody specifically for HER2 + patients).
After surgery I felt a small lump again, exactly where the previous one was. My Breast Doctor assured me it “was nothing” and I carried on happily thinking cancer was all in the past and looking forward to my new lease of life.
In September 2014, ironically the day after I finished the Herceptin course, I found that the small lump had grown. It was in fact “something”.
I had more surgery and a CT scan revealed I had a tumour in my liver. I was now a patient with advanced cancer and my diagnosis changed instantly to incurable.
I was put onto another drug, TDM1, for nearly two years. This took the tumour away, and at first I tolerated the drug well. However the side effects and toxins built up, my liver began to suffer and so did my skin, unbearably itchy and prickly all the time. In December 2016 I ended up in hospital with life threatening skin erythema. Basically my skin barrier had broken down and bacteria was able to enter..
A CT scan showed I now had several tumours in my liver and also in my abdomen.
So what now? My oncologist had no more targeted drugs to offer, however there was a trial opening that I “qualified” for. I was reluctant to take any more chemo after seeing what the side effects could do, but eventually agreed. 8 weeks later I was scanned and found that the drug hadn’t worked, the tumours were growing and spreading.
In the UK there is a line of treatments for people with advanced breast cancer. Oncologists will work their way through them until they start running out of options. There are no more targeted ones for me. I’m having 3 chemo drugs here; two on the NHS and the third, Perjeta, I have to pay for as I don’t “qualify” for it, even though it is specifically for my type of cancer.
The expectation is always that the cancer will continue to grow at some point even if initial response is good. It is also likely that the cancer will become more resistant. The plan was that I would be kept on a drug until the cancer grows or my body can’t take the side effects any more.
This did not fill me with inspiration. I wasn’t prepared to sit around waiting for the inevitable and I realised that my options in the UK were coming to an end, so I decided to look elsewhere. After extensive research – I spent an age on the computer – I contacted the Hallwang Clinic in Germany. They were combining immunotherapy with chemo, and also, vitally, ensuring my body was supported at the same time. It all made sense.
At our initial consultation the Doctor was incredibly knowledgeable. He was aware of all the treatments we had researched. The clinic has access to worldwide treatments and uses the best available in oncology and complementary approaches. And both doctors and patients inspired us with their hopeful approach. We were convinced that that is where I should be treated and where I have the best chance of being with my beloved family for as long as possible. And the chance to grow a bit older – old, even - with my lovely husband, who has stood by me through my ups and downs, helping me with all these difficult decisions.
So that’s what I’m doing.
I went to the Hallwang in May for 5 days and had my first round of treatment. Immunotherapies, ozone therapy, photopheresis, hyperthermia and many infusions, including liver detoxes and Vit C. This treatment is personal, devised specifically for ME. They analysed my blood and found what is driving my cancer, so they can target it. It’s not the “one chemo fits all” approach we appear to have here in the UK.
While I’m at home, I see a fantastic naturopath/biochemist who, alongside the Hallwang Clinic, guides me with what supplements to take and monitors what’s happening at a cellular level with specific blood tests. She has also put me on a very restricted mostly raw diet (all organic, no grains, no dairy, no sugar).
The cost of all this is enormous. So far it has cost us over £250,000 on two trips to Germany. The cost of the Perjeta is £4,094 every 3 weeks and supplements are around £1,700 a month. We have re-mortgaged our home to pay for the treatment I’ve had so far and we are selling our house to help towards future costs. Even with this, we just won’t have enough money.
And this is the really difficult bit for me. I need your help, please. I’ve never asked for anything before at any time in my life, but I need money now to continue my treatment. Anything you can give will mean the world to me, and my family, so I can continue with this life saving treatment.
Thank you from the bottom of my heart.
Linda x
This is my story…..
In May 2013 I was diagnosed with HER2 positive breast cancer. This type is less common (20% of all breast cancers) and is more aggressive, as it tends to grow quickly.
I was offered chemo, surgery and radiotherapy. As a reflexologist I’ve always been into natural and complementary therapies so having chemo didn’t sit well with me but I agreed to it and had 6 rounds. During this time I could feel the lump growing, but doctors assured me it would get smaller. It didn’t.
I had surgery in Dec 2013 followed by radiotherapy and continued on Herceptin (a monoclonal antibody specifically for HER2 + patients).
After surgery I felt a small lump again, exactly where the previous one was. My Breast Doctor assured me it “was nothing” and I carried on happily thinking cancer was all in the past and looking forward to my new lease of life.
In September 2014, ironically the day after I finished the Herceptin course, I found that the small lump had grown. It was in fact “something”.
I had more surgery and a CT scan revealed I had a tumour in my liver. I was now a patient with advanced cancer and my diagnosis changed instantly to incurable.
I was put onto another drug, TDM1, for nearly two years. This took the tumour away, and at first I tolerated the drug well. However the side effects and toxins built up, my liver began to suffer and so did my skin, unbearably itchy and prickly all the time. In December 2016 I ended up in hospital with life threatening skin erythema. Basically my skin barrier had broken down and bacteria was able to enter..
A CT scan showed I now had several tumours in my liver and also in my abdomen.
So what now? My oncologist had no more targeted drugs to offer, however there was a trial opening that I “qualified” for. I was reluctant to take any more chemo after seeing what the side effects could do, but eventually agreed. 8 weeks later I was scanned and found that the drug hadn’t worked, the tumours were growing and spreading.
In the UK there is a line of treatments for people with advanced breast cancer. Oncologists will work their way through them until they start running out of options. There are no more targeted ones for me. I’m having 3 chemo drugs here; two on the NHS and the third, Perjeta, I have to pay for as I don’t “qualify” for it, even though it is specifically for my type of cancer.
The expectation is always that the cancer will continue to grow at some point even if initial response is good. It is also likely that the cancer will become more resistant. The plan was that I would be kept on a drug until the cancer grows or my body can’t take the side effects any more.
This did not fill me with inspiration. I wasn’t prepared to sit around waiting for the inevitable and I realised that my options in the UK were coming to an end, so I decided to look elsewhere. After extensive research – I spent an age on the computer – I contacted the Hallwang Clinic in Germany. They were combining immunotherapy with chemo, and also, vitally, ensuring my body was supported at the same time. It all made sense.
At our initial consultation the Doctor was incredibly knowledgeable. He was aware of all the treatments we had researched. The clinic has access to worldwide treatments and uses the best available in oncology and complementary approaches. And both doctors and patients inspired us with their hopeful approach. We were convinced that that is where I should be treated and where I have the best chance of being with my beloved family for as long as possible. And the chance to grow a bit older – old, even - with my lovely husband, who has stood by me through my ups and downs, helping me with all these difficult decisions.
So that’s what I’m doing.
I went to the Hallwang in May for 5 days and had my first round of treatment. Immunotherapies, ozone therapy, photopheresis, hyperthermia and many infusions, including liver detoxes and Vit C. This treatment is personal, devised specifically for ME. They analysed my blood and found what is driving my cancer, so they can target it. It’s not the “one chemo fits all” approach we appear to have here in the UK.
While I’m at home, I see a fantastic naturopath/biochemist who, alongside the Hallwang Clinic, guides me with what supplements to take and monitors what’s happening at a cellular level with specific blood tests. She has also put me on a very restricted mostly raw diet (all organic, no grains, no dairy, no sugar).
The cost of all this is enormous. So far it has cost us over £250,000 on two trips to Germany. The cost of the Perjeta is £4,094 every 3 weeks and supplements are around £1,700 a month. We have re-mortgaged our home to pay for the treatment I’ve had so far and we are selling our house to help towards future costs. Even with this, we just won’t have enough money.
And this is the really difficult bit for me. I need your help, please. I’ve never asked for anything before at any time in my life, but I need money now to continue my treatment. Anything you can give will mean the world to me, and my family, so I can continue with this life saving treatment.
Thank you from the bottom of my heart.
Linda x
Organizer
Linda Allinson
Organizer
