Let's Talk About Melanoma Focus

0:00Hello everyone and welcome to another episode of Let's Talk About Sacked. My name is Michael and I'm an advanced oncology pharmacist and the education and training coach here in the podcast host and today I'm joined by Nikita Ponder. Nikita, would you like to introduce yourself? Hi everyone, thanks Michael for having me on the podcast. I'm Nikita Ponder. I'm an oncology pharmacist by background and I now do some work with the Nikita Strust on phase one clinical trials and work for my name and focus a charity. Brilliant. Well lovely to have you here and my first question really relates to what led you from clinical pharmacy into working within a melanoma charity. So I think when I turned 30 maybe I had a little bit of a meltdown even though I didn't think I was having a little bit of a meltdown and was thinking of life changes. So it's kind of maybe

1:00precipitated by that and wanting to leave London. So I was a clinical pharmacist, clinical oncology pharmacist at UCLH. I absolutely loved it. I loved being with patients every day, loved the team, loved being in clinics but it was all just life and work was all just a bit hectic so I wanted to take a break from that. So that happened. I took a year to travel and then came back. Decided I wasn't going to turn my back on pharmacy and maybe I should use my skills that I'd learn. I think sometimes in pharmacy we're driven and we focus a lot on our pharmacy skills but we learn a lot a lot of other skills. So I kind of wanted to explore that. Also I wanted to try living in Spain kind of was looking for a remote job before remote jobs were cool and everyone did it after COVID and ended up helping validate some trial protocols remotely and phone electronic prescribing system. And then a connection of a connection who was also an oncology pharmacist had become CEO of the melanoma charity of melanoma focus and was looking for someone to help them set up a trial

2:04finder which kind of linked to what I was doing with setting up phase one trials to interview for that and got that job which was one day a week. So yeah I do bits. I'm still bitty. I'm a freelance. So I'm studying bitty bits of pharmacy work but it works for me at the moment. Good and for people who might not know what is trial finder and why is it important? So I'd trial finder was born or the idea was born before I started working with the charity and the idea was to have an accurate up to date resource for patients and healthcare professionals of all currently recruiting melanoma trials in the UK. Excluding phase one. Because it was to phase on a bit too hard to keep on top of with all the cohorts opening and closing and dose escalation and things. So that was the idea. It was kind of to promote taking part in research to maybe support recruitment for trials through, you know, patient

3:07empowerment with information, also clinician empowerment and information that I think are tips and realise that current trial finders which aren't really trial finders weren't fit for purpose so clinical trials.gov you can find information on that and but we've realised when we started working on this it's not always up to date that some trials either don't the sites don't get updated or if it's not really that easy to read for patients so that was the idea of the trial finder. So there's a finder trial function so the patients can put in type of melanoma stage, any other kind of details about any mutations and they can also put in their postcode so they can search on radius of how far they will need to travel. You can also just search all of the UK and there's a lovely little map and you can click on each point in the map and see the hospital and what trials are open. So I keep that really up-to-date day-to-day week-to-week using information from clinical trials.gov and NIHRB part of research really dependent on sponsors and chief investigators

4:11to keep us up-to-day on what trials are open at which sites they're open, anything in the pipeline so we can prep things before they go on there because we write lace summaries, patients are really involved and review those for us as well. That's kind of like the trial finder in a nutshell. And you also write patient information so my question is what kind of information do you write and who is it aimed at? The patient information role kind of came alongside the trial finder also as I said it was part-time one day a week and then Mellon in fact is a small charity. It's grown a lot in the last few years and the team is still very small so as always in a small team wherever you work you take another little task so it ended up helping write patient information which I kind of hone that skill from writing the lace summaries for the trial finder and we were lucky enough to have a patient, so a melanoma patient that also used to be a copyrighter so she really helped us with feedback kind of pointers of on how to write lace summaries and how to write in the active voice

5:14and things like that so I learned a lot from her she was amazing so moved on to kind of helping write other information for the website so I think 2022 and the website re-launched the Mellon and the focus of website re-launched as well so it's kind of a good time to help out with that so it's health information for patients on the Mellonoma focus website so we've got lots of information we've kind of got about Mellonoma and then we've got something called staging a treatment guide so it's about how Mellonoma site knows the staging what treatments are available side effects also helpful while being mental health things like that so that's kind of like my domain so anything at the moment that needs updating or any new pages that need adding I'll be involved in that so it's aimed at patients but a lot of clinicians use our website together with patients sitting clinic we've got diagrams for example on benefits of adjuvant treatment so we use the blue tech information as kind of like our baseline and then we say if you have adjuvant

6:19treatment this could be the benefit or this is you know recurrence reasonable and we've got lovely little diagrams of people to show percentages and doctors often clinicians often say that they get it up in clinic and it really helps them explain to patients like benefits of adjuvant treatment so it's not just for patients but at the end of the day it is the aim is for patients then to care we achieved a piv tick accreditation which so piv is a patient information forum and they give out accreditations for trustworthy information so as we know nowadays there's a lot of health misinformation around so piv is it's amazing organization that was I think probably born to tackle that kind of health misinformation and make sure the organization's charities I think some NHS trusts that also got piv tick accreditations for their information that they give to patients so they have this whole list of criteria that you have to reach when you're producing patient

7:19information to achieve the piv tick accreditation so we achieve that in 2023 so we've done our third assessment in 25 so our second reassessment and when we've got that for another year so that's really helped me understand health and digital literacy so the average reading aid in the UK is I think between nine and eleven years digital literacy so obviously we're quite website based but we also have leaflets that health care professionals can download and having like the next and it's really helped with our processes of making sure we've got robust trust for the patient information brilliant and that leads us on to general melanoma chat so I suppose you'll be the best person to ask this is my first question to you is what are some of the biggest developments in melanoma treatment in recent years we know that immunotherapy has revolutionized melanoma but could you tell us more? So yeah like 15 years ago there wasn't

8:22treatment for advanced melanoma there wasn't much hope for advanced melanoma patients so like you said immunotherapy has revolutionized that given patients hope one patient that's really in such with a child she's 10 years or 11 years you know post immunotherapy treatment in a trial and is doing really well so stage four patients so yeah hearing stories like that is you know really shows what trials do and and treatment developments do for patients in real life but yeah apart from immunotherapy I guess immunotherapy combinations we've had a couple of immunotherapy combinations licensed melanoma recently but also vaccine trials and tills which is tumor infiltrating lymphocytes so kind of these two come into like the personalized cancer treatments and they're they're kind of now taken off alongside immunotherapy I think the most recent cancer vaccine trial was given

9:24in combination with immunotherapy so immunotherapy is still very the star of the show at the moment but these ones up and come in and we're really excited about them and where do you see the current unmet needs in melanoma treatment or patient support 10-15 years ago there wasn't much hope or survivorship in advanced melanoma and now patients are surviving longer post treatment so we really need to focus on survivorship and the support that they may need because of that with their long-term follow-up so this patient that I mentioned that she's stage four she's sort of 10 years out of treatment she still gets I think will it be through your foremanfully scans and she says she's still patients call it scanziety every time before they have a scan and she still gets that and so it's that mental health impact of surviving longer and longer

10:27post treatment and she uses the trial finder so she really champions the trial finder because she said it empowers her and it gives her peace of mind so before every scan is due she'll have a scan of the trial finder see what trials may be irrelevant to her and take that with her to her scan results appointment so then maybe have a discussion with the doctor if she needs to if she's progress but she really says that that kind of gives her peace of mind because she's taking control of what might happen and what treatments or trials she might be able to take part in next so I think yeah that's support for people now living longer we I think melanoma focus we're thinking of paladin a coaching course with a it's actually with a GP that's done a coaching course who had melanoma so she's kind of all in one so that kind of like yeah it's not now you've got melanoma and that's it it's like how do I live after that and this GP also talks about fertility

11:28like post-treatment because you know people were just given immunotherapy hoping to control the melanoma and some of them are young and thinking about that we also have the melanoma patient conference that supports patients with that kind of think support groups is a really big thing so we have the melanoma patient conference that was started by an amazing patient called imaging cheese and then it got bigger and bigger and we took on supporting her with doing the conference I think it was over 200 probably 250 patients that come it's in Birmingham every year and we have kind of expert talks trial updates mental health sessions and patients can just interact connect with each other it's just an amazing day there's always an amazing energy as a team we always go to that support the event as well so that's kind of like the support of patients part of it because they're living longer also I think it's knowing who needs treatment and who responds the treatment probably better biomarkers like I mentioned before we've got the adjuvant diagram so adjuvant treatment who needs it who doesn't need it I think immunotherapy is a very different

12:33decision if it's adjuvant or if it's the advanced melanoma so advanced melanoma patients might be like get those side effects fine I'll go for it and adjuvant patients maybe they don't need it and they don't need to maybe deal with some short and long-term side effects so I think biomarkers can really help play a role in that like CTDNA testing brilliant and we talked about it a little bit but are there any emergency therapies or trial questions that you're especially excited about so emergency therapies I can mention there's the cancer vaccines so linked with NIHR there's the vaccine innovation pathway which is kind of promoting and accelerating cancer trials and out of that was born through NHS England the cancer vaccine launch pad so they kind of link with certain trials and one of the first trials that was linked with them was actually melanoma trial to kind of get patients to sign up and get them onto these cancer vaccine trials so cancer

13:35vaccines are are really taking off in melanoma as well as other tumor types as we know tells at the moment is just gone through a nice process actually waiting for the results or treatment of advanced melanoma so tells is tumour infiltrating lymphocytes so it's technology kind of like clarty where you take cells from the patient and you process them in the lab and then you give them back to the patient so challenges with that are probably like the processing still because it's quite new to everyone and it's it's a tough treatment so we as a charity are often asked to feed into kind of like nice committees so we're asked to provide patients or patient quotes for nice committees and a lot of the comments this time around where you know it's brutal it's a really harsh treatment not the actual tells but like the conditioning chemo and the IL-2 after it's not an easy option but it's revolutionized you know these patients have responded well

14:36to treatment so we're often asked it's it's for as a charity it's really exciting to be involved in these processes as well if these things happen in other trial things that we're excited about is like I mentioned before CTDNA it's a trial at the moment that's looking at targeted therapy and if it can be cypals to avoid resistant as much resistance so you will start the treatment have CTDNA test if it's not detected you'll stop the treatment and then you'll keep having the test until it's detected again and then you'll stop the treatment again and similar with immunotherapy so obviously immunotherapies change so many Alex for so many tumor types but it was kind of arbitrary how it was done in terms of it was like chemo like this duration this frequency we don't really know really enough how it works so there's some trials in melanin at the moment that are really challenging actually and for patient acceptance but giving less duration of immunotherapy or giving it less frequently and so I think there's a trial

15:41at the moment refined which is a melanoma and another tumor type which is trying to give it 12 weekly but patient acceptance is hard and so we as a charity help like educate around that and we've made videos for certain trials that we've done so I think we really supported them they unfortunately had to close early because of patient recruitment members and COVID I think it was a combination but they did present an asco and their results were really really promising for shorter duration but patients feel safe when they're on treatment sometimes and so if they think if they hate you know average two years on immunotherapy they're like I want my two years of immunotherapy even though six months could be enough so these are really exciting trials for us that are coming up so how do tools like trial finder help address inequalities or access barriers for patients so trial finders I mentioned before so we've got a patient version and a clinician version but if we we talk about patients first so it's it's education and patient empowerment

16:42of of information and shared care decisions I guess so we're really careful with the trial finder to kind of put on there a disclaimer at the beginning that this isn't for you to go and look so we put on the patient version we put the trial sites so patients can see if it's acceptable to them the where they're going to travel what we don't want them to do is contact the trial sites so on the clinician version we do actually have the PI names and on the patient version we don't so we make sure we put a disclaimer that this is for information only we haven't exhausted all the eligibility criteria so this is something that you need to take to your treating oncologists and discuss with them you know it's more like an empowerment tool also the trial finder we don't have phase one on there but we love to include observational trials as well just to show the importance of observational trials on quality of life we've got bio bags on there that patients can offer to give to you and to so just to show that

17:45patients up trials aren't always a last resort which I think a lot of people think I've got no options left I have to go on a clinical trial that's not the case so we really like to educate around that and that's probably one of the main things especially for patients also like I mentioned show patients that they can travel to receive treatment so they might not know that they you know if you're not a big trial center or teaching hospital where there's a lot of access to trial information you're a kind of maybe a smaller hospital that you can travel for trials and be referred to at the hospitals but the thing for us for producing the trial finder was like I said for it to be accumulating up today I think if there was a centralized trial finder that was accumulating up today we wouldn't need to exist and we as in our trial finder wouldn't need to exist and we could use often it was something else and it would be brilliant but at the moment that that isn't available so we're really happy to to use our trial finder and and keep it up to date

18:50so that's the patient kind of like the patient benefit and what do you think clinicians could be doing better in terms of signposting patients to trials kind of similar for what I've already said maybe so we've got a clinician trial finder which again is maybe for clinicians that aren't as well connected in the research world or in trial centers that can then look up their patients demographic their type of melanoma et cetera and find trials for them and provide the patients with that information the options and just educating them again that trials aren't a last resort the benefits have been involved in research you know like we use a line I think when we've done some promotion around trials is that all current treatment come from clinical trials so it's you know it's really important to be part of research maybe just using using patient charities in whatever tumour type that probably have information on trials and I know there are other tumour types that have them as well to be able to signpost patients

19:55and then and then see if they can be referred on for trials I think that's probably yeah probably the main the main thing that clinicians can do and my last question to you is what would you say to oncology pharmacists who are interested in roles outside of the traditional clinical pathway I think there's pharmacists um some vocational degree I think if you're a clinical pharmacist and you do a diploma again it's quite focused on our pharmacy skills and to remember all of the other skills that we learn as a pharmacist to be able to branch out into something different I mean don't get me wrong I miss the patient contact I do miss it but I kind of have it but remotely like I email patients so sometimes call patients but I miss that that patient contact in the hospital once it's remembering what we do why we do it

20:59and that we can use our skills for a lot of other other alternative pharmacy roles uh don't get me wrong I think I was quite lucky in the in the timings of all of this and Covid and I was stuck in Spain during Covid and it kind of like gave me the push to do it I am freelance so it is still the alternative pharmacy roles are still kind of emerging but I think having a background as a pharmacist is brilliant there's given me so many skills and it just gives me a lot more insight into certain things when I've been on patient advisory groups to really understand from both sides like now I'm working for a patient charity but I've got the pharmacy background of how things actually work and really so recently took part in an NHS England tender as well and we were given the patient voice but it kind of helped me understand what was happening in the background having that kind of clinical pharmacy kind of pharmacy background and thinking of things that really affect patients you know like we talked about immunotherapy side effects so yeah don't be afraid to

22:02to take a jump is what I would say we have got we are multifaceted as pharmacists and I think we've got the skills to do what we what we want make a change brilliant thank you Nikita and thank you everyone for listening and we'll see you in the next episode of let's talk about SACT