RT: Hello and welcome to ESMO 2019. We are here to talk to you today about the holistic needs of non-small cell lung cancer patients with an ALK rearrangement. My name is Rachel Thomas and I’m a lung cancer clinical nurse specialist at Guy’s and St Thomas’ Hospital in London. This is my colleague.

JF: I’m Jackie Fenemore, I’m a lung cancer nurse at The Christie Hospital in Manchester and we’re here with ecancer today.

RT: Lovely. So maybe, just starting off, what would be helpful, Jackie, for me to understand, because I know there are differences across country, about your experiences of managing ALK patients in your setting. Are there any particular challenges or things that you’ve noticed?

JF: They’re obviously a very small cohort of the lung cancer community and often because they’re ALK positive they’ve come from a different type of typical lung cancer background. So they’ve often never smoked, they’ve sometimes picked up the diagnosis of lung cancer without having any major symptoms or some very unusual symptoms. Often they don’t feel breathlessness, they may present with brain metastases. So often psychologically they need a lot of support to come to terms with the fact that they’ve been given a diagnosis of lung cancer. Do you find that?

RT: I do and I’ve found also that unlike other lung cancer patients they tend to be really young. So one of our youngest patients was in her 20s and there was a lot of distress for her because when she presented she had widespread metastatic disease. So there was that fear about having that and how we were going to treat that and also the mortality and facing up to her own mortality when she thought she’d probably live into her 80s and that was no longer going to be the case for her. So in the beginning when I first met her and we were talking about starting treatment it was almost like treatment was important but this was really important to try and address that side of things.

JF: Yes, how she would cope with things. How did you find that she managed on the treatment? Did she have any particular issues with coping?

RT: She had a bit of a rash but we managed to deal with that with her. She was less concerned about that than stopping treatment.  She was more worried that if the rash was particularly bad we’d have to stop treatment and then what did that mean for her and would we restart it. A lot of patients when you stop treatment panic that the disease is going to rapidly progress.

JF: Because rash is quite a common side effect of these ALK positive drugs but we can normally manage those quite well in the clinic. But for a young patient in her 20s obviously that’s a very visible problem for her because she’d have to explain to people why her skin has changed. So it can be less of a trivial problem for a young woman, can’t it? What we tend to do in clinic is stop the treatment for a time and treat the rash with creams and sometimes antibiotics if they’ve got some infection in the skin and then restart the treatment. That seems to be managed quite well and most people can cope with that. The rash doesn’t always come back as severe when we’ve had a break in treatment. Do you do the same?

RT: We do do the same, yes, we do. Picking up on a point that you mentioned earlier about this being a small cohort of patients, what other support do you offer your patients so that they don’t feel alone in having this cancer diagnosis?

JF: We always make sure that the patients meet a clinical nurse specialist in the clinic and we have a contact number that they can contact. We find that the patients on these treatments don’t tend to have too many problems with side effects but we always give them the information that they may develop diarrhoea, they may feel some nausea, occasionally vomit. The rash can be a huge problem but we’re also checking their bloods regularly to make sure that they’re not getting liver toxicity and things like that. But most patients it seems to be the psychological impact that we really need to support them with.

RT: Absolutely.  One of the things that we’ve done in our centre, because we realised that this group of patients was unique and had a different set of care needs to maybe a 70 year old smoker might have, we set up a patient support group. One of the things that the patients that attend that group, they’re very proactive so they do attend the support group, is that they are able to share experiences with each other and also they’re now talking about having lobbies and pressure groups for government to be able to ask for more research and investment into their particular type of cancer.

JF: Is that a support group for the UK or is it more local to your hospital?

RT: We would accept patients from anywhere but it’s mainly London area which means that patients would have to travel. But also I was really interested that at BTOG this year there was a patient advocacy group for ALK positive patients and they have set up quite a good social media presence. We are now encouraging our patients, obviously we’ve met the person that runs that group and we’ve looked at who regulates that information on that group but we’re now trying to encourage our patients to join that group and access that group. Recently they had a day in Birmingham where they invited two expert doctors to come and present and it was great to see a room full of ALK and EGFR patients all together networking.

JF: So these patients tend to be supporting each other through these groups. I’ve heard about ALK UK, they’ve got a Facebook page, haven’t they? And I did meet some of the advocates at BTOG as well. It was really interesting to see what they’re up to and how they’re supporting each other. They’re looking for new treatments because obviously even though life expectancy with patients with an ALK positive mutation have increased, there are still cases where patients don’t do so well and then they’re looking at other trials and other areas where they can maybe get some effective treatment. I think these groups are great for supporting people.

RT: They are and just picking up on that point, do you find, because I find in my practice, that when patients don’t get as long as they feel that they should be getting on these drugs. So, for instance, one of our patients got seven months and then she progressed and she was really upset because she was expecting… she’d heard patients being on the drug for a year or more and she was really put out that she hadn’t had that and then she had to go onto chemotherapy. Do you find that that causes patients, in your setting, psychological distress and anxiety about having to go on chemotherapy?

JF: I think people are looking on the internet, especially our younger cohort of patients, and they obviously want to do better than the average. Then if they’re doing worse than the average that really does affect them more than you would be able to anticipate because people obviously are very hopeful that we’ve got these new treatments for lung cancer but individually we can never really predict who is going to respond well to treatment. When people do badly it’s so difficult for us as healthcare professionals to know what advice to give because people are looking for a cure, aren’t they, and it’s still stage 4 disease. So even if we’re able to push the boundaries we’re still having to deal with the fact that this is a terminal illness at some point and that people’s lifestyle will be impacted by that.

RT: If I was a brand new CNS, lung cancer CNS, going into looking after this group of patients, particularly from somebody of your expertise and experience, what would you say would be the top things for me to remember for looking after these patients?

JF: The main thing is a diagnosis of lung cancer is always extremely difficult for people and that we have to be able to guide them as much as we can with that. But we need to listen to the patient and what’s important for the patient because it’s often things that we can help with but it’s often that we can signpost them to the relevant support or information that they need. So you just really have to listen to what your patients are saying, don’t you?

RT: Yes, and do you find having maybe regular telephone contact with your patients during that first month on treatment, it can be really helpful to them to alleviate fear and also to pick up early side effects as well? We’ve found that to be of great benefit.

JF: I think some people really, really respond to having a telephone call either that the nurse makes to them or that they can ring in when it suits them to just catch up and go over things again. Because sometimes when they’re given information in clinic they just can’t take it all in and there’s a huge amount that they’re dealing with psychologically or just trying to remember what we’re saying. Then sometimes they just need to revisit that again. It’s useful if they can bring a family member with them because obviously two pairs of ears is better than one. I think we need to support the family members as well.

RT: Yes, I was just going to say, that’s absolutely right. That’s a really important point that sometimes the carers get missed out. Some of our carers are more anxious than the patients and so it’s how do we support them as well in what’s going on for their loved one.

JF: I think open communication and trying to get everybody to be as open, as honest as they can, even if that’s distressing, it pays dividends in the long run because you can actually get their concerns out in the open and then you can be more open and honest as a healthcare professional.

RT: So we hope you’ve found that session very informative and I hope that you’ve managed to take away some top tips from our shared experience with you. Thank you very much for joining us, goodbye.