Tepmetko

Hi Catjen and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.

I'm not a member of this forum but noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list again. I'm sure that any members who have had this drug will be along soon to share their experiences with you.

I used the search function to look for previous posts which mention using Tepotinib (Tepmetko) but drew a blank I'm afraid. Of course this doesn't necessarily mean that no one here is on this treatment, it could just be that they haven't posted about it yet.

x

Hi Catjen

I started on Tepotinib begining of May so just over a month now. Like you, I've struggled really to connect with anyone else on this forum going through the same treatment or indeed any further information on it besides what I've been told by my oncologist and specialist nurses. 

To date I'm ok with how I'm feeling.  The biggest noticeable difference is swelling in the lower legs for which I'm booked to see a Lymphoedema specialist for ways I can reduce the swelling.  I don't have any nausea problems and have kept a healthy weight.  I'm on full dosage and at the moment on blood tests every 2 weeks to see how I'm managing with that. 

It would be nice to hear how you're getting on with the treatment and any experiences/advice you've been given.  

Hi JOHNCT 

oh it’s fantastic to hear from you - I was beginning to think I was the only one on here!

I’m on “cycle 3” so third box in. Same as you, I’m on full dose and have just started to notice the swelling in my lower legs. It’s manageable though - I try and put my feet up when I can and have bought a special pillow to use in bed. I have noticed that my tummy is swelling a bit - not sure if this is a side effect but would be interested to know if you’ve noticed any swelling other than your legs?

Other than that I feel good - far better than I did on chemo and immunotherapy and find I’m not as out of breathe as often. I’m really hoping this means the tumour is shrinking but will find early next month on my next Ct scan. When do you have a scan?

Im on blood tests every 4 weeks - just before my oncology appts.

Let me know how you get on with the lymphoedema specialist!

Hi there, my mum newly diagnosed with advanced nsclc had been on Tepotinib for near a month now. Following your thread x

Hi Itshardbutwecandoit , how is your mum finding the treatment? x

Hi Catjen, well she has made extraordinary improvements really. Overall she is doing well. She is struggling a little now with the foot & leg swelling. I hope you are doing well x

Hi johnct, how are you going? 

Hi all 

I was thinking about posting an update and hey ho, got a message to ask how I'm doing so thank you for that and the nudge. 

I had some really positive news yesterday as I had a CT scan just over a week ago and saw the Oncologist yesterday with the results.  She showed me the before and after scans (so the original one being done back in April when I was first hospitalised and diagnosed and the recent one done mid July) and it was amazing just how much my left lung looks so much clearer.  She is delighed with the results and how much it has shrunk so I am passing on the positive vibes to you guys.

Regarding the swollen legs, a couple of things going on here.  My Macmillan nurse kindly did me a referral to my local Hospice who can provide help and treatment as an outpatient.  I've been seeing a lovely Lymphoedema nurse who does practical massage on my legs and has helped me in getting the right compression socks sorted out.  The compression socks are Sigvaris but these have proved difficult to get with a prescription as the pharmacies I've tried said they are out of stock.  Out of a need to get some, I ordered separately online (no problem buying them yourself online!! ) but they are £53.00 per pair so pricey. I'm trying to sort the prescription side out with my doctor as the Sigvaris ones are making a difference to my lower legs and have definitely reduced the swelling.

Separate to that I've seen a Lymphoedema specialist at my hospital who's done some ultrasound tests and measurements on my calf leg and will see her again in 3 months to do the tests again to see if any worse/better.  

In general I feel pretty ok in myself and still not getting any other side effects apart from the legs but although they are annoying, they are not stopping me doing anything.  

Let me know how you guys are getting on. 

Cathy

Hi Cathy and Itshardbutwecandoit 

Well - you nudged me as well   I am so happy to hear both your news - that is amazing!!!

So positive with me too - I had a scan about 4 weeks ago and larger tumour had shrunk by more than 50% and the smaller mass at the base was barely visible - I couldn't believe it... the best news I've had since I started this journey in July last year.  The plan is to continue on the treatment as long as my body can take it.  I enquired about surgery however they felt that as I was doing so well on the current treatment it wasn't an option (not ruled out but just not an option at the moment as I would have to pause the treatment).

Side effects are pretty much the same for me although I'm noticing swelling is now creeping into my hands and arms - I've had to take my wedding rings off before they cut all circulation!  My thighs are definitely starting to go that way too.  I've got my oncology check up on Friday so am going to enquire about a Lymphoedema specialist/massage... my legs and calves are so tight and sore, despite wearing compression socks and having then up against a wall whenever I can (apparently pumping your feet helps with the circulation of fluid).  BUT, like you, its not stopping me from doing anything (I actually fly to Dublin next week for work). 

Thanks for the heads up with Sigvaris.  I'm using Koala Socks at the moment... they are very cute but prehaps not doing as much Sigvaris ones could..  All worth a shot I guess!  I do think this (wonderful) heat isn't helping. 

Have you been told to continue to drink lots of fluid by your specialist?  I've read conflicting information... some sites say to cut down and other say to increase...

Really, really pleased for you both - its so lovely to hear such postive and wonderful news!!  

Jen x

Hi Jen and itshardbutwecandoit

Thanks for your update and so glad to hear that you are doing well - that is great news!  Keept the positives coming! 

I haven't been told one way or another about the fluid intake.  Yes, the weather at the moment certainly doesn't help in wearing these compression socks and making your legs swell up but I've not been told one way or the other about fluid intake and she didn't ask so I've kept it as normal.  Hopefully weather will break soon - at least I hope so in Surrey!

I'll keep you updated on compression socks saga and trying to get them on prescription.  

Cathy x