Nsclc

[Debbj]

Hello I'm new here. i will find out if the Keytruda is working in about a week. My question is what to do if it isn't? Has anyone had success with treatments abroad? I'm nsclc with neuroendecrine elements? 😳 and mets in brain and liver. Any ideas welcome...... meanwhile I'm hoping it's working!!

[Hopes77]

I don't know much about this treatment but my mum has Neuroendocrine cancer in her lung with Mets to her liver.

She was diagnosed last Oct and started her Etoposide and Carboplatin chemotherapy on the 30thof Oct. She tolerated 4 cycles, her last one over 4 weeks ago.

After her 2 cycles of chemotherapy it showed that the tumours were responding and shrinking and she has her results on Friday after a further 2 more cycles to see if they have shrunk further.

They said that they would monitor her after that.

When I have mentioned to her Oncologist 're further preventative treatment he has informed me that there was nothing on the market for Neuroendocrine cancer?

So I'm interested to know more 're Keytruda so I can discuss this with him on Friday.

Your in my prayers and I hope this treatment works for you x

[JeanneLe in reply to Hopes77]

I have nslc and have had four different types of chemo. I was diagnosed in December 2014. I finished my last one in January as it wasn’t working. None of them have been spectacular but do seem to have slowed it down a bit. It was my last option and they referred me to UCH for any available trials, that is on hold while I’m on the keytruda.

I asked my oncologist if I had been tested for PDL1 mutation. When they checked my old biopsy I had it. That meant I was suitable for Keytruda/prem which is an immunotherapy drug. Several people on the Macmillan site have had very good results with it. I’ve just had my 4th infusion, it’s every 3 weeks.

I had a ct scan after the second treatment as I had a gall bladder infection and it was still showing growth but it was early days. Quite often they seem to grow before they shrink. I now have to wait till after the 4 th one before another scan.

The side effects are a lot easier to cope with compared to most chemo, fatigue is my biggest problem. It’s worth asking if the biopsy has been checked.

Jeanne

[JanetteR57]

Welcome to the group that no one wants to belong to but can help support you with your experiences. It's really important to speak to your clinician and find out about your specific condition (including mutations) as treatments for lung cancer vary widely and are now much more specific so just because one patient is receiving treatment for their lung cancer, yours may be different, a different stage, you may be a different age/fitness/have other conditions, have a different type. You may find the materials available on the Roy Castle site about 'lung cancer treatments' helpful. There are now several options for treatments and even within each type of treatment (surgery, radiotherapy, chemotherapy, immunotherapy, combination of any/all/some of these) and all depend on your own specific situation. Even within non small cell, there is adenocarcinoma and squamous cell, different stages, different mutations so you need more information. During the last few years, more agents have been developed to help those with metastatic cancer so please discuss with your oncologist and cancer nurse specialist if you have one. Keytruda has and is helping many patients so hopefully some may respond re this. The UK is advanced with the amount of research/clinical trials as well as following the key treatments available with some excellent specialist centres. Good luck with your treatment and do have a look at the information on the website as it could help explain in a better way than my poor attempt here.

[livvyloot]

Hi, I had 3 lots of Keytruda but was so ill with it and they said it was not working even though results of trial said it would work 40% (which was very good). I'll keep my fingers crossed that you have more success than me. I am now out of any other options just waiting my time, no more hosp visits just a McMillian nurse visiting to see how I'm going. Good luck to you.x

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Hi Debbj,

When you have your next follow up hospital appointment you will get an opportunity to discuss your individual progress with your consultant.He/she will discuss what other treatment options may be available to you depending on your response to your present treatment.

Kind regards,

All the team at the Roy Castle Helpline