Curly Car's Cancer Fund
I was diagnosed with breast cancer during pregnancy and this has now spread to my liver and lung. I need to raise money to allow me to access life-extending cancer drugs that are not routinely available on the NHS in Wales.
In September 2015, at the age of 42, we discovered I was pregnant with our second child. We were absolutely delighted with this news, as we had not expected this to happen and we very much wanted a sibling for our two-year-old son.
About six weeks later, I noticed some very subtle changes in my left breast and went to see my GP. She referred me to the breast clinic and I got an appointment for two weeks later. I was given an ultrasound and biopsy and two weeks after that, in my sixteenth week of pregnancy, I was told I had a 5.6cm cancerous tumour in my left breast. The doctor informed me that - as I was beyond the first trimester - I could have chemotherapy to shrink the tumour and it would not harm our baby. I would then need surgery after the baby was born.
I had my first of eight, fortnightly cycles of chemotherapy on the 8th of December and my hair started to fall out on Christmas Day (Merry Christmas!). Although, at times, it was tough, it wasn't as bad as I had imagined it would be. I had lots of side effects, some minor, some quite severe, but I had no nausea or sickness. I had regular scans to check the baby and these showed she was growing well.
I finished chemo in mid-March and our daughter was delivered by Caesarean Section on the 29th April. She was a very healthy 7lb 5oz and perfect in every way. We decided to call her Mira because she is our miracle.
As I was no longer pregnant, it was safe for me to have a CT scan. Before we received the results, I had a mastectomy. The pathology results were very encouraging - the surgery had got rid of all evidence of cancer in my breast and lymph nodes. We started to dare to believe that this was the happy ending we had hoped for... until we got the CT results.
My doctor explained that the scan had shown some suspicious areas on my liver and left lung and he would like to send me for an MRI to further investigate. On the 23rd June, my oncologist informed me that the MRI had confirmed that these areas were indeed cancerous and I now had secondary (i.e. incurable) cancer. And our world collapsed around us.
Secondary cancer is not curable but it is treatable. My cancer is HER2 positive, which means there are targeted therapy drugs that can stop it from growing and spreading. At the moment, I get three-weekly injections of a drug called Herceptin, and so far, this has stopped my cancer from progressing. At some point though, this will stop working - this could take years or it could take months. There are other targeted therapy drugs that have proven to be very effective in treating my type of cancer. These are TDM1 (or Kadcyla) and Pertuzumab (Perjeta), but these are not routinely available on the NHS in Wales. We can apply for these but it is highly likely our application will be rejected. We can appeal the decision but this takes time, which is a luxury I may not have. I have therefore decided to try and raise funds now, while I am well, and before we begin the process of applying for funding from the NHS.
The cost of the drugs is as follows:
Kadcyla: £5,120 per cycle (every 3 weeks)
Perjeta: £5,750 for the first dose, £2,875 per cycle (every 3 weeks)
I have no way of knowing how long I would need these drugs, so I have set my fundraising target at £150,000 as this equates to approximately one year on each drug.
In the unlikely event that we manage to secure NHS funding for these drugs, some of the money raised will be used to provide security for Rudy and Mira, and a large percentage of it will be donated to a charity called Mummy's Star ( www.mummysstar.org). This is the only charity in the UK and Ireland dedicated to women and their families affected by cancer during pregnancy. Mummy's Star has been extremely supportive since my diagnosis and we would love to repay them for this.
This has been a hugely challenging and traumatic time for us and those close to us. We have to motivate ourselves to raise funds at a time when we are still reeling from the implications of my diagnosis. Our family and friends have been extremely supportive and have thrown themselves into the fundraising. My siblings launched the fund in September and raised a substantial amount of money at an event where they cut off their hair!
We are fully aware that these drugs do not offer a cure, but they could provide me with extra years with my children, which could be the difference between them remembering their mother or not. If you could spare any amount of money - however small - or if you would like to get involved in fundraising, my family and I would be extremely grateful.
Thank you for taking the time to read our story.
Carolyn, Gos, Rudy and Mira
Facebook: Curly Car's Cancer Fund
Twitter : @curlycarsfund
Check out our video on YouTube:
The Curly Car Band - Beautiful Woman
Tomorrow morning, I’m getting a portacath (an implantable port) fitted. This is a small reservoir that sits under your skin and is attached to a tube that goes into a large vein close to your heart. Chemotherapy is often administered via a tube which is injected into a vein in your hand/arm (a cannula); these drugs can cause your veins to harden, making it difficult to inject into them. A portacath makes this process easier and is especially beneficial if you are receiving chemotherapy regularly/for prolonged periods.
I’m quite looking forward to having a portacath, but I’m not looking forward to the process of fitting it. It’ll be done under local anaesthetic and I’m told it’s not pleasant... it’ll be worth it though, I’m sure...
My last drug (Herceptin) was given via a subcutaneous injection into my thigh - a nurse came to my house to do this every three weeks. Kadcyla is given via intravenous infusion, which means it’ll be injected directly into a vein in my arm over a period of about an hour. This will also be given every three weeks, but it has to be done at the chemo unit.
I was very fortunate in that I had very few side effects from Herceptin. Kadcyla has a number of common side effects (nausea, fatigue, muscle/joint pain, etc) but it doesn’t generally cause hair loss, so I get to keep my curls!
Kadcyla is a ‘targeted therapy’ and it is used to treat the specific type of secondary breast cancer I have (HER2+). It is made up of Herceptin and a chemotherapy drug called Emtansine. It locks on to the HER2 proteins on the cancer cell, blocking the receptors and stopping the cells from dividing and growing. It also releases the Emtansine directly into the cancer cell, damaging and destroying it from inside the cell. Clever, eh?
I’ll continue to receive Kadcyla for as long as it works. When it stops working - which could be months, or it could be years - I’ll move on to the next available drug.
So, fingers crossed for maximum success and minimal side effects! Let’s do this!
I got my latest scan results and they showed some progression in the cancer in my lungs. It’s only slight but it means my current drug (Herceptin) is no longer effective. I’ll be starting my next drug (Kadcyla) on Monday.
Kadcyla was one of the two drugs we initially started fundraising for, as - at the point of my diagnosis - it was not routinely available on the NHS in Wales. Fortunately, it was made available last summer, so I won’t need to self-fund this drug. The other drug, Perjeta (Pertuzumab) was - just last week - also approved for routine use on the NHS in Wales. However, this is only for first line treatment of secondary breast cancer. As I’ve already had Herceptin as my first line treatment, I don’t qualify for this. Therefore, further down the line when I need this drug, I’ll still need to self-fund.
Thank you for your continuing love and support. This whole thing would be so much harder without you all holding my hand. ❤️
I don't know you or your family but I was so sorry to hear your news. I have contributed to your fund via a sponsored aerobics event but would like to try to possibly help in another way if I can. If you would like to contact me on 07828112205 maybe we can have a chat?
Hope all goes well with your next scan and your plans can go ahead for your holiday and wedding. Fabulous news!
So sorry to hear that you'd been back in hospital but glad that you're back home. My thoughts are with you and your family. Barbara x
Hi Carolyn, glad you're home, what a smile you have! Now seriously chill and sleep and spend time with those gorgeous little ones. Lots of love from me x
Hope everything goes as well as it possibly can, you are an amazing person xx
We don't have a God, but we wish you every success with the operation, and plead with any God there might be to look after you. Love by the busload.X.
Fabulous news Car, we need them to make them all available free on the n.h.s. in Wales now, or even better, a cure. Our thoughts are with you often even though we rarely see you. May you live for ever. Love and peace from Claire, Sam, Morgan, and the grumpy one(me).
we your mum and dad on our cruise holiday in corfu,they told us off your condition ,I hope you stay brave and focused xsay hi to mum and dad
Carolyn, Im trying to donate but its not working. I shall give my donation to Shents tonight if you're not there ~ much love xxx
love you beautiful girl xxxx
Do you have any links for us to donate?
Have you asked about the Metapher Clinical trial? This is chemo combined with Herceptin and Perjeta. I have been on this trial in Velindre Cardiff since March. I know they are still recruiting. I've met ladies from all over south, east and west wales on this trial xxx
Hi Carolyn @ Gos so sorry to hear your devastating news Wal is away until 3 October but I will start to put together a night of music for when he is back and if you need anything please get in touch sending you all lots of love Ren xx
Hi Carolyn,. So sorry to hear your news. Known you all your life and would luv to donate,. Can you please let me know how I can do this,.. Lots of luv to you and your beautiful family.. Annette Thomas. (Annette Payne)