On Lunar 2 trial-anyone been on Lunar device?

Hi Liquorice and a very warm welcome to the Macmillan Community but so sorry to hear about your diagnosis. 

I know from experience having been on my cancer journey for over 26 years (first diagnosed in 1999 at 43) with two very rare, hard to treat types of Non Hodgkin’s Lymphomas (one incurable) then Asbestosis and recently Prostate Cancer that navigating this journey can be such a stressful and challenging time but talking with and getting support from people who have walked or are walking the ‘exact same' journey can help a lot.

The Community is actually divided into dedicated Support Groups (Discussion Rooms) so can I recommend that you look to join and put up your own post in our dedicated…….

 Lung Cancer

Living with incurable cancer - incurable patients only

…….. support groups.

These groups are safe places to talk to others with a similar diagnosis, treatment experience, to ask questions and get support.

I did a Community search for Lunar 2 Trial but did not get a hit but that’s not to say that someone has been on the trial but has not as test posted on the Community.

To connect in with the group please click on the link above……. then once the group page opens you will see a [Black - Click to Join - Banner] at the bottom of the page, click in this box and this will then confirm that you have joined the group.

You can then introduce yourself to the group by putting up your very own post by clicking [+ Create new post] or [+] in the top right of the group page.

You can copy and paste the text from this post into your new post.

As always the Macmillan Support Line is open between 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00…… this service provides cancer information, practical information, emotional support, benefits and financial guidance or just a listening ear.

Talking to people ‘face to face’ can be very helpful so do check to see if you have any Local Support in your area, do also check for a local Maggie's Centre as these folks are amazing.

Do get back to me if you need further help navigating the community.

Thanks so much for that help, just joined one group already. Sounds like a long journey for you, sorry to hear.

Hi there, how are you getting on with the trial? My partner is soon starting this, we find out in a few days if selected for the device or not. 

Hi there, I am still on the trial but decided to come off the Optune device due to quality of life.  Where would your partner be wearing the device if u don't mind me asking?  If it's on the head then at least it leaves your upper body free to move around.

The pads called arrays vary in size depending on where u have to wear them. I have lung cancer so the arrays are larger.

Katrina 

Hi liquorice it’s for lung cancer, willing to try it and see how it goes. However we are mindful that it may not work out (if selected) we have small children so definitely something that plays a part. Oncologist doesn’t seem overly concerned about the kids and really pushed this trial although there was also another option available, the vaccine! Which would have started after a few weeks of treatment starting. Hope you’re doing as well as you can.  

Hi

Ah right.  It is very challenging, at least in the winter it will keep them warm! The pads heat up, I started during the summer and it was unbearable, trying to keep them on was a nightmare.  Skin care is very important. The more you can wear them the better, my Consultant led me to believe that you just wear them during the day, this is incorrect. If your partner gets randomised the arm of the trial with Optune, they will get a "device support worker" assigned from the company behind it, the support worker when she came to train us, said to basically wear 24/7 and just remove once or twice a week for a day, we were shocked. Some Consultants don't know this obviously.

Mine didn't know there was a closed support group on WhatsApp for people on the device. I only found out about it at the end of the summer after struggling with the heat. You can pick up tips on skin care from that group. Unfortunately there was no one in the group who was trialling for lung cancer. I know some issues are the same, but I do know that wearing them around your torso to my mind is more challenging.  They are pushing it because now there is no one trialling in the UK for lung.

I am more than happy to give any tips any time if they get to use the device.  I didn't know there was an injection, what is that?

To add to previous, I wore it for 3 months and then last month stopped it

I don't know what happened to previous reply which was lengthy, it seems to have disappeared

I have lots of tips if selected to trial it

Hi liquorice it’s not a needle from what I’ve read about it. There’s some info online about it, there was a lady in a latest report being I think the first person to trial it, I may be wrong , I’ve read so much on trials lately haha. Your best looking at clatterbridge there’s more info online about it and what the criteria for it is. Yes we’ve been told 16-18 hours west for the device, should we be prepared to be told differently? ‍ we find out this coming week anyway.