Cessation of immunotherapy too soon?

Hi Hispeed805307,

Welcome to the Online Community here at Macmillan. We hope you find it a warm and welcoming place to ask questions and find support. I’m Kirstine, one of the information nurses here. I’m sorry to hear that you are going through this. It’s never easy to come to terms with an advanced cancer diagnosis and the uncertainty that comes with trying treatments and frequent reviews of that. I can appreciate how disappointing it must feel to have heard yesterday that you have a new satellite tumour in the lung that wasn’t there before.    

Pseudo progression is a phenomenon where immune responses can cause misleading interpretation of tumour sizes when immunotherapy is in use. I found this helpful article describing one case study, but in the latter half of the paper it describes some recent literature around how this is assessed and categorised now in light of what we know about pseudo progression these days. What is clear is that the picture may be complex, and the specialist consultant’s interpretation, based on a wealth of practice experience will be crucial in offering you the best information to plan next steps. They will undoubtedly be concerned by the appearance of a new lesion but will also have been looking at whether there have been any changes to the liver lesion. They may be further guided by the period of time you have been having pembrolizumab as most cases of pseudo progression will be seen within the first few months, although occasionally pembrolizumab has been known to appear more effective beyond 6 months.

I’m not sure how your meeting with the specialist concluded yesterday, but if you feel unhappy with the outcome, or uncertain about next steps it would be worthwhile asking to speak again, or seeking some time with your Clinical Nurse Specialist to explore this further. In some circumstances it may be appropriate to continue and review again in another 3 months for a clearer picture, but you may also wish to be discussing what next steps there are for you and whether you might be a candidate for a different immunotherapy regime, any targeted treatments, or suitable clinical trials.  

You can always request a second opinion, but being seen is at the discretion of the receiving clinician to whom the referral is sent. We have some good information about the pros and cons of seeking a second opinion on our website that might be helpful to read. I would also suggest perhaps speaking with the nurses at Melanoma Focus who may be able to offer more insight.

You would be very welcome to ring us if it might help to chat this over. And you may be interested in joining our Melanoma Forum.

I hope this has been helpful.

Warmest wishes,

Kirstine – Macmillan

Cancer Information Nurse Specialist

You can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or send us an email. Ref KDf/ AP

Kirstine,

Thank you so much, that has been really helpful. I also spoke to my GP about this who has agreed to request a second opinion. 

Kind regards

Gail