Kidney cancer (terminal) progressed to Leptomeningeal Metastases TRIAL DRUGS?

Hello Maisie,

Thanks for getting in touch. My name is Megan, I’m one of the Cancer Information Nurses on the Macmillan Support Line.

Welcome to the online community. I see you have yet to join any of our forums. You might be interested in the Kidney cancer forum, Family and friends forum or the New to the Community forum. We find that experience sharing with others can be both empowering and supportive.

I am sorry to hear your dad has recently been diagnosed with secondary leptomeningeal metastases from a primary kidney cancer diagnosis from over 10 years ago, your dad certainly is a fighter indeed. Do wish him my very best and let him know if he’d like to reach out and speak with us, he’d be most welcome.  

In the immediate I hope this information from Brain Tumour Research on Radiation in treating secondary brain tumours proves useful in reading.

Doctors are still working to understand how best to treat leptomeningeal metastases. Currently treatment depends on where the cancer started, in this case kidney cancer, and his hospital team would be best placed to advise on the recommended treatment options that are available to him.

Other treatments for advanced kidney cancer usually include targeted therapy and surgery. As you may be aware chemotherapy shows little efficacy in treating metastatic kidney cancer but can still be considered for those who have exhausted all other targeted treatments and trials.  

As you had explained his hospital team were not aware of any current clinical trials that would be suitable for him, but I feel it is worth exploring in this ever-changing environment.

I hope Cancer Research UK’s information on clinical trials and how to find a clinical trial may prove useful in reading. Action Kidney Cancer also has a clinical trials database that you may wish to explore.

The Brain Tumour Charity also has some fantastic information on taking part in clinical trials including also support for those unable to take part in clinical trials. Specifically, they highlight the organisation MyTomorrows, a free international platform that helps patients and physicians to access drugs that are still in development.

Please note, that having secondary brain tumours may disqualify your dad from entering some trials and is something to be mindful of when exploring the eligibility criteria of all trials. If in doubt all the organisations above do have helplines and you could ask for clarification as needed.

If you do find a clinical trial that you think would be suitable. It is suggested that you print off the information for your dad to take along and discuss with his doctor. Very few specialists would mind this. They will be only too pleased to refer you if the trial is suitable.

Separately, your dad might be interested in seeking a second opinion from another specialist and can do so by asking his hospital team or GP to refer him elsewhere. If he wishes to get an opinion privately, he can search for a consultant here.

We understand that when someone is told of a progression in their disease or a change in their prognosis, this can have an impact on how they are feeling. Your dad may wish to seek support with how he is feeling here. This can also be a difficult time for yourself, close family and friends. It is important to recognise if you too need some support during this difficult time.

I hope this information is useful. Please don’t hesitate to get back in contact by email, webchat or phone, if you need further information or support.

The Macmillan Support Line offers practical, clinical, financial and emotional support. You can call us free from landlines and from most mobile phone networks on 0808 808 00 00, 7 days a week, 8am – 8pm.

Best wishes, Megan

Cancer Information Nurse Specialist 

Ref MD/RH

Hi Megan

Thank you so much for your detailed response, I found that extremely lovely and helpful and I have already emailed some of the trials that I found on those various websites.

It may be worth me emailing someone (perhaps yourself, no worries if not?) directly as I have had a more offical, medical, detailed letter from his consultant this morning?

Regards

Maisie

Hello Maisie,

Thanks for getting back in touch. My name is George. I’m one of the Cancer Information Nurses on the Macmillan Support Line and a colleague of Megan, who responded to your original question you posted here on the online Ask a Nurse.

I have read through this thread and your question, and I am so sorry to read about what your dad is going through and the stress and upset this must be causing you all at this time.

Unfortunately, we do not have the facility to receive and interpret results via email or post. However, it may be worth contacting us on our telephone support line and speaking to one of the Cancer Information Nurses. We can then discuss the content of the letter you have and aim to answer any questions you may have regarding this medical letter or signpost you in the right direction to find further answers and support.

Please don’t hesitate to contact us by email, webchat, or phone. You can call us free from landlines and most mobile phone networks on 0808 808 00 00, 7 days a week, 8 am—8 pm.

Kind Regards

George, Cancer Information Specialist Nurse

Macmillan Support Line

Ref: GH/SF