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Life Beyond Stage IV: Celebrating One Year NED!

Hello friends!

Sorry I’ve been AWOL for the past few months.

After becoming completely exhausted whilst working full time in the hospital this summer, I decided to give myself another career break for a few months (until I finally finish cancer treatment at the end of 2017). Despite the blood, sweat, tears and shingles, I’m pleased I went back to work when I did as it finally enabled me to complete my F2 training and now puts me in a position to locum as and when I have the energy. In the meantime I’ve been enjoying a mixture of relaxing down-time along with embracing my new ticket to worldwide travel (my yoga teacher qualification) – plus still having treatment at The Royal Marsden every three weeks.

My Recent Adventures

Sri Lanka

Just to get you up to speed on the past few months… For those of you following my Instagram account (dr_laurencara), you’ll have seen I shared my recent stay at Sen Wellness Sanctuary in Sri Lanka. Although the sanctuary is primarily a kundalini yoga and ayurvedic centre, the lovely owner Sam, who has become a dear friend over the past few years, invited me out to experience the retreat but also practice teaching vinyasa/yin styles of yoga. Below are a few photos from my trip – the first one being of my beautiful friend and kundalini teacher, Candace, who I learned so much from during my time at the sanctuary. If anyone is currently stuck in a job that no longer serves them, if you are stressed and exhausted and feeling empty – just take a look at this stock-broker turned kundalini teacher for inspiration!

After a month in this beautiful healing setting I can honestly report I felt healthier and more energised than I have in years. The food was amazing, the people were inspiring and the energy within the sanctuary itself was pretty incredible. I can’t recommend the experience enough.

Portugal

After my trip to Sri Lanka I returned to London for a busy week of CT scans and treatment. Fortunately my scan was once again clear – pushing me beyond the one year NED mark! (yay!). Following this wonderful news I then spent a wholesome week at Vale De Moses, a secluded yoga retreat in the foothills of Portugal. The combination of eating fresh vegetarian food, practicing yoga daily, embracing a slower pace of living, and having limited wifi provided me with another chance to fully rest and recharge in the most beautiful setting.

Cornwall

My final adventure involved joining my friend, Julia, for her first ever yoga retreat down in St Ives. The five day retreat run by Julia and Jo (the team behind By The Sea St Ives) was a combination of vinyasa and yin yoga, nutritious, wholesome food (plus a little bit of wine), surfing, and hiking. I was also invited to speak to the guests about Gut Health which I absolutely loved.

What can I say… the last few months have been pretty epic!

Celebrating One Year Of No Evidence Of Disease

Although I didn’t throw any kind of one year “cancer free” party (or celebrate in any way come to think of it), I think you’ll agree that I’ve been busy living life to the full and celebrating in my own way. I’ve also finally started to make plans for 2018, something I’d have never have done during the first year after my stage IV diagnosis.

Back then the average survival for patients with stage 4 metastatic melanoma was still considered to be less than a year – due to it being a notoriously aggressive and chemo-resistant form of cancer. In fact just a few years ago, maybe just one in 20 patients with stage IV would survive beyond five years. Therefore I found myself living life in three month blocks between my scans. I found it easier to try and live as mindfully as possible, living each day as though it was my last. As soon as I started worrying about the future I’d immediately ruin the present moment.

None Of This Would Have Been Possible Without Immunotherapy!

Despite the abysmal statistics for stage IV melanoma patients during the past few decades, the statistics are finally starting to be re-written and that’s all down to immunotherapy. Pembrolizumab, the drug I’ve been receiving for the past 18 months, is one of the first generation of immunotherapy drugs. It was designed to release the “brakes” that inhibit the immune system from attacking cancers. In the early trials 24% of patients diagnosed stage IV had an overall response to therapy (meaning tumours partially or completely shrank). Fortunately, that’s exactly what happened to me. After my 6th infusion (around 4 months into treatment), several large visible tumours beneath the skin on my chest began to shrink. By my second set of scans – around 6 months into my 2 years of treatment – all the tumours in my body were gone.

Celebrating NED (Rather Than Being “Cured”)

The reality is that while the cancer is no longer detectable, it’s certainly possible that traces of the cancer remain and could potentially return one day in the future. I think I’ll forever be slightly concerned about the fact cancer cells may have crossed into my brain, largely because of a swollen lymph node at the back of my head which appeared just before I started treatment (and then later disappeared). But I guess for now we can say I’ve been in “complete remission” for over a year – which is pretty bloody amazing especially given the situation 18 months ago.

Just to clarrify:

  • Cure means that there are no traces of cancer after treatment and the cancer won’t come back.
  • Remission means that the signs and symptoms of cancer are reduced. Remission can be partial or complete. In a complete remission, all signs and symptoms of cancer have disappeared.

Obviously the hope with immunotherapy is that when your body has learned to identify your form of cancer, it remains vigilant against it. This seems to be the case for the growing number of patients who have had progression-free survival following immunotherapy. This summer results were published showing 42% of subjects with metastatic melanoma who received pembrolizumab were still alive four years into the study (and the study is ongoing). Some 13% of the subjects who received my drug had a “complete response” (like me).

Remaining Side Effects

I feel like I’ve had a pretty easy ride with my treatment compared to many cancer patients. My only real symptoms have been that I get very tired sometimes and I’ve developed vitiligo on my neck and jaw. And that’s it. However, immunotherapy is far from a guaranteed “get out of side effects free” card. My course of treatment has gone relatively smoothly, but the side effects for some – from fever to colitis to pancreatitis – can be so severe that they’re unable to continue treatment. Additionally not everyone repsonds and in some rare cases people die from the side effects of the immune system being ramped up and going out of control. Just this summer trials were halted in which pembrolizumab was being tested in conjunction with some other immune-boosting drugs to treat multiple myeloma – citing an increased risk of death.

Boosting Immunotherapy

The other side of this coin is that some patients don’t respond to immunotherapy and scientists are now trying to work out what is it about the subsets of patients who respond that makes them different. Obviously it probably depends largely on the extent and spread of disease at the time of starting treatment, but it also appears to involve other factors. One of these factors might be my favourite subject on this blog – gut health.

Gut Health And Immunotherapy

Earlier this year the results of the first study looking at the relationship between the gut microbiome and immunotherapy response in patients was published. Gopalakrishnan et al. found that those who responded to a PD1 checkpoint inhibitor (my drug) had a greater diversity of gut bacteria and larger volumes of a specific type of bacteria than those who did not respond. I know I write about this subject all the time across my blog, but please, please, if you are a newly diagnosed cancer patient take the time to do everything you can to support your gut health (from certain dietary changes to adding in a daily probiotic, or even considering a 12 week programme). You never know – it might make the difference between responding to treatment or not.

The Future Of Cancer Treatment

Recent clinical trials and research continue to show that immunotherapy holds promise for other forms cancer, including breast, lung, ovarian, pancreatic and myeloma. However, not all cancers or patients respond to this treatment. Fortunately another emerging area of research is CAR-T cells. This is when scientists genetically engineer a patients T-cells (the fighters of the immune system) to home in on the patient’s cancer and then grow millions of the modified cells in the lab. When the cells (now called chimeric antigen receptor cells, or CAR-T cells for short) are returned to the patient, they are much better equipped to hunt down and kill the cancer cells. Basically, we are seeing a new generation of cancer treatments that harness the body’s own innate cancer-killing machinery – how cool is that?!

My Future

Right now I have some very loose plans for the latter part of 2017 and 2018 – but nothing is firmly set in stone. I think a huge lesson I’ve taken away from this experience is learning to live each day as it comes and not take anything for granted. I doubt I’ll ever go back to making a “5-year plan”, simply because none of us ever know what is round the next corner.

Wishing you all lots of health, healing and happiness.

Lauren x

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