Weʼre raising £200,000 to help fund life saving cancer treatment for Ashley #GIVECASHSAVEASH
- Tunbridge Wells, United Kingdom
- Health and medical
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Being diagnosed with cancer at the age of 25 was the most difficult thing I’ve ever had to deal with. In one single moment, your life flashes before your eyes and the simple things that you took for granted now all seem so much more important…
Recently, we have been given the dreaded news that there is only one more potential treatment available through the NHS and that all of their options have now been exhausted. If we want to beat this we are going to have to go in search of novel and ground-breaking private treatments both here in the UK and further afield. I have a beautiful girlfriend, amazing friends and the best family you could ever wish for and I’m not ready to give up on them without one hell of a fight. It is with your help through this page that we are looking to raise enough funds to pursue these treatments and continue this fight. #GiveCashSaveAsh
My cancer story starts in January 2016, when after various visits to the MacMillan Cancer Centre in London i was diagnosed with Peripheral T-Cell Lymphoma (NOS), a rare type of Non-Hodgkin Lymphoma accounting for less than 10% of all cases. From the outset we were made aware that this type of cancer can be difficult to treat and were offered chemotherapy as first line treatment with the hope of getting me into remission that would allow me to have a Bone Marrow Transplant. As well as being a rare type of cancer, my Cancer in itself was quite unique, Initially presenting itself as a fungating wound on the outside of the skin. This required daily attention in the form of dressing and cleaning and Danielle took up a second job as a Nurse! WARNING THE NEXT PICTURE ISNT FOR THE FAINT HEARTED!!
Before you know it, i'd started a chemotherapy called CHOP. This is regarded as the gold standard treatment for my type of cancer. I prepared myself as best I could for the side effects, but the reality is that nothing can really prepare you for the side effects of chemo. Sickness, fatigue, anaemia, infection and hair loss arrived within weeks of starting and brought with them some of the darkest days I’ve experienced so far.
Unfortunately after 3 cycles of CHOP, scans revealed that my disease had progressed and that the doctors needed to seek a new chemotherapy regime. Disappointed at the results but optimistic for the new treatment, I arrived back at back at the hospital 2 days later for ESHAP – a treatment that required a week-long stay in hospital (in order to be monitored by the ambulatory care team). This time, however, we only made it through 1 cycle of ESHAP. Once again the disease had developed during the treatment, meaning that it was now present in my bone marrow.
Undeterred by this setback, the doctors quickly switched my treatment to IVE – another type of chemotherapy, which required long stays in hospital and led to even more severe side effects due to the toxicity of the drugs. The sickness got worse, the tiredness increased and I could feel my body getting weaker. Looking back on this period, I can safely say that it was one of the most difficult so far – the way I looked definitely reflected that!
After 2 cycles of IVE, and 2 stays in hospital due to Neutropenic Sepsis i had my standard PET-CT scan and was called in for the results 2 days later. At this stage, the common theme was for the Dr's to say "Sorry it hasn't worked, we need to try something different", but this time there was a different feel to the meeting. I'd had a great response to this treatment and the scan had showed vast improvements in the cancer in the neck, chest and pelvis and i was already penciled in for 1 more cycle of treatment with the hope of getting into a remission for the transplant!
I arrived at the hospital for my 3rd IVE and I was excited to start treatment! This was the beginning of the long road to recovery and a cancer-free life… or so I thought. Unfortunately I was about to be dealt my biggest blow yet. I finished the treatment and had my scan – expecting the results to show a similarly improved response. But the cancer had once again become resistant to chemotherapy and we were back to square one. This time, however, we were at a point where we’d already had the 3 main treatments given to patients with Peripheral TCell Lymphoma and options were seemingly running out.
The doctors decided to change their tactics for a while and I was pencilled in to start radiotherapy for 20 days in a row in December 2016. I was happy to be trying something different, but also nervous as the side effects of radiotherapy included sore skin and taste loss – quite important during the month of December, with Christmas dinner on the menu! Having started the radiotherapy, I was in agony within a few days. My skin was raw, I couldn’t sleep and the pain was excruciating!
I was given 6 weeks recovery time post-radiotherapy to help the area heal before I was booked in for another scan, to see how the treated area had reacted. It was a mixed result, with the area around the neck showing much less activity but the untreated areas having time to considerably worsen. It seemed like whatever we tried wouldn’t work and all the efforts were in vain. We were now at a stage where the doctors suggested a clinical trial, as they believe this had a better chance of working than having more chemotherapy.
The trial was called RomiCar, supposedly a new type of treatment able to block the signals to the cancer cells. After a few weeks waiting to get started, I finally arrived at the hospital once again – it was beginning to feel like my second home. The plan was to have 2 cycles of this treatment, then have a scan afterwards to see how the treatment was working, with the option to remain on the trial for another 8 months if the results were positive. Knowing the theme of this story up to now, I’m sure you can guess the outcome.
We were called in to see the doctors after the scan. By the worry on their faces we knew it was going to be bad news, but nothing could have prepared us for what we were about to learn. The cancer had progressed considerably throughout the trial. I now had cancer in my liver, spleen, lungs, neck, lymph nodes, bones and bone marrow – in short, the cancer was taking over my body. The doctors decided quickly to revert back to chemotherapy – it felt like a final roll of the dice of chemo. I was going to start Mini LEAM, an extremely potent regime used before transplants but also used in special circumstances, like this one. By this point, it had been a while since I’d had any chemotherapy, so I had to prepare myself for the side effects once again. I was dreading it, but there was no other option – I had my friends, family and Danielle to help me through and I was still willing to fight it!
The next 8 weeks were hell! After finishing my first cycle of Mini LEAM, my immune system became so weak that I picked up a number of infections and illnesses and was admitted to hospital for nearly 4 weeks in isolation. A chest infection led to me needing oxygen to breathe and my low platelet count led to me having a haemorrhage in my eye – which meant I was effectively blind in one eye. I looked like something from a horror movie!
On being released from hospital, it was time to have my PET-CT scan in order to see how this treatment had affected the cancer. 2 days later we were called into see the Dr where we were met by a lady called Jude who is one of the top Transplant Nurses at the hospital. To our surprise, this treatment had absolutely blown away the cancer and the Doctors were saying I was in a state of remission! This would allow me to start the transplant process - I was shocked, I didn't want to ask questions, I just wanted to cry. This felt like the best news we had ever had and finally we had found a treatment that had worked.
A week later I started my 2nd and final cycle of Mini-LEAM in order to put me into a deeper remission whilst the transplant team worked tirelessly behind the scenes to find me a donor and prepare me for starting the transplant. Everything was going well, we had found a match who was willing to donate his bone marrow, we had a date set for the transplant and everything finally looked set. All I needed was to get through the next few weeks of treatment and I'd be on my way to recovery......
I finished my treatment and had my final scan booked in before starting the transplant, we were nervous as were the doctors but excited to get started. I had the scan on a Tuesday and on the Thursday I was called in for the results. This was the hardest day we've experienced so far. The treatment had failed to keep me in remission and a few new spots of cancer had emerged in the chest and abdomen meaning that I was no longer in a stable enough condition for the transplant, to make matters worse, the Doctors expressed that this was their last option for chemotherapy and now their choices were very limited as to what they could offer me in order to try and achieve what now seemed impossible. Our best chance of curing this seemed to have passed and now we were faced with the uncertainty of what next?
So where will your kind donations be going?
Firstly, I require a series of private consultations with specialists in their field, especially within the area of Immunotherapy to put together a treatment plan for me. The name of the Drug we are aiming to be given is Avelumab which is an anti-PDL1 antibody. With expected dosage to be at Avelumab 10mg/kg by IV infusion once every 2 weeks. A maximum of 8 cycles, each cycle is 28 days.
We are currently in discussions with various specialists in regards to the cost of both the drug and Doctors fees to administer the treatment. Early indications show an initial target amount of £200,000 and that's what we are working towards with your help!
I feel ok, my bones ache and I'm tired but I still have so much fight left in me and I'm not willing to give up. Losing this fight is not an option.
If you wish to contact me to ask any questions or would like to speak about anything I've written then please contact me on firstname.lastname@example.org
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- 9 days ago
Ashley Grant - Smith9 days ago
11 days in to the campaign and the support and coverage we have received so far has been amazing. I just want to say a massive thank you to everyone involved and we will keep pushing and fighting until we get there! #GIVECASHSAVEASH
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- 17 days ago
Ashley Grant - Smith17 days ago
Just want to say a massive thank you to everyone who has donated and come up with some amazing ideas already. You've all blew me away! Lots of love xx
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Ashley Grant - Smith started crowdfunding
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Sep 24, 2017
You've got this Ashley. All my love and prayers for your journey. Stay positive xxxxxxxx
Sep 24, 2017
Thoughts are with you mate. Keep fighting and hope you find the treatment you need! X
Sep 24, 2017
Hi my son in law Scott Jones sent me the link. I really hope you raise the money. My heart and thoughts are with you and your family. xx
Mick R (Newfound Pool Club)
Sep 24, 2017
Mick, Tracey, Finley and Riley
Sep 24, 2017
Sep 24, 2017
Sep 24, 2017
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About the fundraiser
Ashley Grant - Smith
Tunbridge Wells, United Kingdom
Being diagnosed with cancer at the age of 25 was the most difficult thing I’ve ever had to deal with. In one single moment, your life flashes before your eyes and the simple things that you took for granted now all seem so much more important...
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