Hello everyone. This post has taken me the best part of three days to write! It was time to make sense of the past few weeks by putting it all into words. Here’s what’s been happening with me.
I wrote here on Happy Magazine almost a month ago, about how I was doing at the time (good) and exciting news (being accepted onto the San Fran drug trial and releasing the Cancer Journal to fund my treatment costs). You can read it here if you missed it. Since then, the weeks have gone by in a blur of activity on all fronts and there is a lot to tell you.
A few days after my last post, my amazing friend Olive O’Sullivan from West Cork business Browtique, set up two fundraising pages online for me. She saw how I was trying to raise funds for my treatment costs by creating and selling the Cancer Journal, and wanted to help. I was so incredibly grateful for her offer to do this for me as money was again starting to become quite a worry for me. I have been doing an intensive programme of integrated therapies alongside my conventional treatment for some time now and while none of them are wildly expensive individually, they really add up together. As I watched money flying out of my account I began to panic about what we really could afford.
Olive first set up a Facebook donation page, but after a lot of requests from people who didn’t want to use (or don’t use) Facebook, she set up a GoFundMe page too. She became my unofficial Fundraising Manager and put in incredible work to spread awareness of the fundraising pages, my Cancer Journal and my drug trial journey to San Francisco. Over the past three weeks she has kept every single donor up to date with daily updates and generally made the impossible possible. The fundraisers collectively raised over €10,000 in the first week and have since gone on to raise over €25,000 for me.
When Olive first asked me if she could set up a fundraiser for me, she asked how much money I needed. I said to her I would be over the moon if we managed to raise €10,000 as that would help pay for my travel to and from the States for at least a year for the San Francisco trial. Never in my dreams could I have hoped for a fundraiser to raise twice as much as that for me and I am extremely, extremely grateful to everyone who donated. You have collectively created beautiful sunshine for us these past few weeks, warming us with your generosity and messages of support and hope, and we are very, very grateful.
As many of you know already from Olive’s video update earlier this week – it has since turned out that I shouldn’t have to travel to the US again after all (just the most INCREDIBLE news) and we will now be able to use the monies raised for other treatment options – for example, expensive genetic testing. More on this below.
Personally I think this development too was a result of all of you and the collective energy you created with the fundraisers ❤️ As well as donating so generously, it was all of you who also made this mountain move for me. Thank you #HollysArmy 🙏🏻
The Cancer Journal
Thank you also to everyone who got in touch about helping with the journal mailings.
The first print order of 100 Cancer Journals sold out in one week. I ordered another 100 and these will be arriving to my house in the next few days (w/c 29 June). Any orders outstanding have already been notified by email about the delay. As soon as the journals arrive, I will put them into envelopes and label them and then my friend and neighbour Alison will post them for me.
All proceeds from the sales of the journal will be added to the fundraiser money and together both will massively relieve the financial stress we have been feeling lately.
Many of you have been in touch to say you have received your journal and I am so proud that you love it as much as I do. I hope, hope, hope that it helps to organise you during your own cancer treatment and keeps you motivated through it all. I would absolutely love to hear your feedback on the journal and how it is working for you if you are using one, please do get in touch if you would like to (email@example.com).
I have also had a lot of cancer survivors get in touch about whether I would design a journal for ‘life after cancer treatment’ or a journal for those caring for someone going through cancer and wow, would I love to create both of those too! I will be putting both on my To Do list.
The CytoDyn/Leronlimab Cancer Trial – #HollysTrial
In my last update I let you all know that I had been accepted onto a metastatic triple negative breast cancer trial in the USA with an investigational drug called Leronlimab/PRO 140. This drug is made by a biotechnology company called CytoDyn and the trial is being handled by a research team at Quest Clinical Research in San Francisco.
I’d like to give you some information about the trial in the next few paragraphs, in case you are interested in it for yourself or a loved one/friend. If you are not interested in this part, please skip on to the next heading.
The official title of the particular trial I am taking part in is as follows:
A Compassionate Use Study of Leronlimab (PRO 140) plus Treatment of Physician’s Choice in Patients with CCR5+ Metastatic Triple-Negative Breast Cancer (mTNBC)
The purpose of the trial is to study the safety and efficacy of the trial drug when given in tandem with particular chemotherapies in the treatment of metastatic triple negative breast cancer.
Before being accepted onto the trial, I needed to supply the research team with some tumour biopsy slides for testing. My hospital helped me with this and sent what was needed from the liver biopsy I had done last August. The samples were tested and two scores were produced for me – a “CCR5 score” (mine was 60%) and a “PDL1 score” (mine was 90%).
The drug Leronlimab is a “CCR5 antagonist”. It works by binding to cancer cells, which in turn makes them less likely to spread throughout the body. Here is a technical bit from my consent form which explains this further:
Leronlimab (PRO 140) belongs to the monoclonal antibody class of medicines. Monoclonal antibodies are synthetic versions of the disease-fighting proteins (antibodies) that are naturally produced by the body. Antibodies that are normally in the blood typically react to foreign organisms or materials (bacteria, viruses, etc.). However, Leronlimab (PRO 140) binds to a protein (CCR5) that may be present on the surface of cancer cells. When Leronlimab (PRO 140) binds to the CCR5 receptor on these cells, the cancer cells are less likely to spread throughout the body.
So the idea is that Leronlimab may be able to slow or stop the spread of metastatic triple negative breast cancer. And boy, am I looking for that! If I can stop the spread of my cancer, I will hopefully be able to live for some time yet. And time is what I am after.
Leronlimab has been given safely to over 800 people so far, mostly HIV patients, for the treatment of HIV. It has only been given to about 20 women with metastatic triple negative breast cancer so far and I am now joining this group. I have had two doses at the time of writing this and have had no side effects to report yet.
It is an investigational medicine and the team make no false promises about success – it may work favourably for me, or it may not. My score for it to work favourably was 60% and that, to me, was certainly worth trying for.
If you are interested in finding out more about this trial for yourself or a loved one, please watch the following video and visit the following information pages:
Travelling to San Francisco during COVID-19
As many of you already know via Instagram and Olive’s excellent daily updates, I flew to the USA last week to complete my enrollment onto the trial, receive my first dose of Leronlimab and learn the correct procedures for self-injecting myself with the drug for the foreseeable future.
Getting permission to travel to the United States during the COVID-19 pandemic travel restrictions was a long and uncertain process, but ultimately, amazingly, we managed to get all the travel visas and waivers necessary (thanks to the US Embassy and also a friend we know in Dublin Airport) and I made the trip as fast as I could, on my own.
I flew out of Dublin at lunchtime on Tuesday last week (16 June), arrived in San Francisco via a stopover in Chicago at about 3am Irish time, went to bed, got up on Wednesday morning in San Francisco, attended my appointments with Quest Clinical Research and their breast cancer oncologist in the afternoon, went to bed, woke up at 3am San Fran time Thursday and began the long journey home again via New York! It was a three-day medical appointment, basically 🤣 with one short sightseeing bit in the middle, more about that below.
I arrived back in Dublin at about 4.30am last Friday (19 June). It really was a flying visit across a lot of timezones and involving four separate plane journeys, a little bit of drama here and there but generally, it was a success all round.
A special mention must go to the very kind Delta air hostess who ran with me through two airport terminals in New York and helped me get a train between them, to make my connecting flight home to Dublin. Due to COVID-19, JFK airport in New York was mostly closed and had no wheelchair assistants on duty when I arrived off my San Fran flight. This lovely air hostess offered to run with me almost all the way to the Aer Lingus check-in desks and it was only because of her, that I was able to make it onto my connecting flight. Up until that point, wheelchair assistance on the journey had been key to getting me where I needed to be on time and comfortable, but not on this leg of the trip! This lovely, kind hostess carried my heaviest bag and ran with me for well over twenty minutes – what a woman. I’m going to write to Delta to try get a proper thank you message to her.
I’d also like to thank the two very kind gentlemen from the Explosives Team(!) of airport security in San Francisco airport – they were so kind and professional about checking my bags after my trial medication supply triggered their x-ray machines! Something that could have been such a nightmare but which was handled with such professionalism and kindness.
In terms of travelling during COVID-19 – it was all very peculiar. Dublin Airport was 95% closed and my first Aer Lingus flight only had about another ten passengers on board. The US airports were significantly busier with their own domestic flights but my flights were nowhere near full. I’d estimate there were maybe 50 or 60 people on each of my US flights. The wearing of face coverings was mandatory on all my flights and this was cause for a very aggressive argument between two women on my San Fran to New York flight. The woman who had removed her mask was ultimately threatened with removal from the plane by the Captain, after she swore at one of the air hostesses (incidentally, the same hostess that ran with me later on!). It was clear to see most people travelling were very concerned about the virus and the possibility of contracting it on their journey. I must admit that by the time I finally got home to Ireland again, I was most relieved to be self-isolating at home once more – the constant threat of the virus on your mind is exhausting.
During my very short stay in San Francisco, I was fortunate to be staying in a comfortable, centrally-located hotel which was booked and paid for by CytoDyn. I would say there were probably only a handful of other people staying there too, making the hotel absolutely silent at night (bliss!). A continental breakfast was served direct to my hotel room door on the Wednesday morning but this weary traveller had been up since 4am and was in need of something substantial!
I asked my hotel to call me a taxi and a lovely man by the name of Mizen, originally from Bangladesh but living in San Francisco more than twenty years, picked me up. He helped me find an affordable diner that had “sidewalk dining”, ie. an outdoor seating area where they could serve you food, and I booked him to collect me for my return airport journey the following morning. Then I sat at this diner, ordered a lovely hot brunch, freshly squeezed orange juice and coffee, and refuelled!
I have often talked to my family about special encounters with people that have happened during my cancer journey and how sometimes I feel the circumstances are so unique that I feel these people are almost my real-life guardian angels, there to help me when I need it the most. Well, there was another one on this trip – a lovely Irish woman by the name of Gina, who lives in San Francisco with her husband and four kids.
Initially I had hoped to travel to San Fran with Edel, a friend I had met through St James’s Hospital who was also hoping to get the drug. Unfortunately she was not well enough to travel with me (thankfully, she has since been able to get the drug to come here for her 🙏🏻) but her family friend, this lovely woman Gina, extended her offer of hospitality (originally for the both of us) to me anyway, even though we had never met!
Gina offered to collect me from the diner where I was having my breakfast/lunch and take me on a little scenic drive through San Francisco (with our masks on, of course). How incredible was that, right? It was a couple of hours of fun amidst a challenging goal and just what I needed to stay positive and upbeat about what I was in the US to do. Gina is kind and interesting and we got on like a house on fire. She did indeed take me on a scenic drive of all her favourite spots in San Francisco and I snapped a few photos wildly here and there while we chatted. I couldn’t walk very far because of the breakthrough pain I was having, so sitting in a car and just looking out the window was perfect. It helped me feel like I did see a tiny bit of life in the US, outside of the aeroplanes, on this visit.
San Francisco was still on “lockdown” while I was there and it appeared to me to be very locked down. As mentioned, there were no restaurants open for indoor dining – collection and delivery only – and all shops other than grocery stores were not just closed but boarded up too, making the city seem very quiet and a little eerie in parts. Gina also brought me to a Whole Foods store so that I could buy some bottled water and food supplies for my journey home – this was so helpful. So there you have it, I even made a new special friend on this unforgettable trip – thank you Gina!
Boy, was I happy to get home on Friday morning. My husband Derek met me at the airport with a thermos of my favourite tea – he knows me so well – and it was amazing to hug and kiss my little boy when he woke up later that morning with a huge smile – “Mammy! You’re back!” 😍 That was music to my ears.
Latest scan results
Before I made the trip to San Francisco, I started to experience some breakthrough pain through my regular, ongoing pain medication. This pain medication had been keeping me going quite nicely, pain-free, for the past few months, but all of a sudden, it started to not be enough. We were sensible about things and ultimately decided I was still able to go ahead with the trial trip, however since my return home, the pain has really increased (perhaps my long run through JFK aggravated things a bit). This past weekend was the worst by far, and by Monday I was having difficulty walking and standing for more than a few minutes due to pain.
Pain has always been my indicator of cancer so I knew something was probably on the go again. I asked my team for a CT scan, had it done on Monday this week and we heard the results yesterday (Wednesday).
The cancer has progressed during my two month break from chemo. It has progressed in my liver and there are now a few suspicious lymph nodes in my upper arm/shoulder that were not there before. While it’s not “dramatic” progression according to my oncologist, he said it’s not trivial, either. So it’s time to get back to chemo as soon as possible.
Nothing showed on my CT scan regarding my pain issues at the moment though, so my oncologist has ordered an urgent MRI scan before we do anything else. He wants to see exactly what is going on and whether radiotherapy might provide some relief from the pain, so that’s the first course of action for next week.
We also need to decide which chemo to resume – whether we should continue with GemCarbo or start something new. There are a couple of options here to consider (thank goodness for options) and I’ll be doing a little research on this myself too. We are also proceeding with an expensive, complex genetic mutation test called the Foundation One test. There is only a very slim chance it may reveal something that could be helpful but a chance is a chance and I need every one we can get.
Sure, the news wasn’t great, but it wasn’t terrible either. My brain scan was clear, so that is worth celebrating! But, my “no-chemo summer holidays” are over and it’s time to get back to chemo ASAP to kick some cancer butt again!
Things I have been enjoying
There are quite a few lovely things that have been keeping me cheerful lately.
Chesapeake Shores, a drama TV series on Netflix, has provided hours and hours of pleasant entertainment for me these past few weeks. My favourite self-care habit at the moment is to soak in a hot epsom salt bubble bath, candles lit and this show streaming on my iPad. I never, ever used to make time for myself like this – I’m happy that has changed.
My bedtime has become enchanted by the unique and charming book, The Boy, The Mole, The Fox and The Horse by Charlie Mackesy – thank you Cathy for sharing this with me ❤️ I love reading a few pages of this every night before I turn in. It has been called a book of hope for uncertain times and that it definitely is. It really is such a beautiful book about life’s most important lessons and would make a treasured gift for someone special.
Finally, I would like to take this opportunity to thank each and every one of you who came to read this update post today. For supporting me, Derek and Andrew with this difficult time, for sharing my fundraisers and buying the Cancer Journal. Happy Magazine has enriched my life in so many ways but best of all are the friends I have made during the journey so far. Friends like Olive and Cathy, Ruth and Clare, Gay, Dianne and Trina, Teresa from Breast Friends, Anne from Roches, Kate and Pauline from Bravelle, Valerie of Valerie’s Breast Care and so many, many more. My life has equally been enriched by every message I’ve ever received from Happy Magazine readers – many real-life guardian angels have been found, and unique and special connections made. Yes, cancer sucks, but gosh, it’s got one hell of a silver lining (Stacey Kramer explains it well in the above Ted talk, well worth a watch if you haven’t seen it before).
That’s it for now everyone, it’s been a long one! I hope you are all keeping well. I’ll be back soon.
By Happy Magazine Editor, Holly Kennedy.