Pembrolizumab has now stopped

7 minute read time.

31 Mar 2022

This is a bit of a catch up blog as I hadn't posted since the end of 2019, and holding a lot of info in my profile section is a bit unworkable, so here goes.

I finished my last entry hoping that I would be a complete responder again, my spoiler alert is that I haven't stopped because I'm clear but because pembro isn't being effective any more but I had 57 doses so that is good going, and I had a few breaks along the way.

After it was suggested I go to 6 weekly treatments so I could miss one over Christmas I was annoyed that they messed up and only had a 3 week one ready so that was my first break but moving to 6 weekly afterwards meant I got a bit more of a life back with less visits to Hospital.

Feb 2020 scan, introduced positively by oncology, November’s enlarged node has reduced to 13mm, I thought that might be the end of the report and that the enlarged node I thought I felt after the scan was imagination. He continued a new enlarged node has been reported as necrotic, so good news and treatment on Pembro continues, funding is there to continue. I don’t think he said the size and I didn’t ask I assumed it would be about 13mm like all the others that have popped up have been but the scan report shows 23mm, but I did have a gap in treatment over Xmas and the node I thought I felt reduced a few days later and can’t now be felt so I will have to go with things are positive. Nothing is affecting my walking, I’m on 6 weekly treatment so less interruption to life.

April 2020, well covid19 is affecting lots of peoples treatments, and for me there is no best answer, I can continue with Pembro or take a break til July. My initial reaction was to carry on with treatment, as melanoma is a known problem, CV19 is a potential, but I perceive it as a potentially more imminent and more serious threat to both me and my husband, I hate making quick decisions especially if there is no wrong or right answer, it’s more important to know why the decision is being made, what do you want to achieve and will your answer achieve it, or maybe be the closest solution. So I’ve done a u turn, I’m having a treatment break but if I can feel anything coming up again I’m to contact them to restart earlier.

May 2020 well I can feel an enlarged node, so I’ve had a scan which is being discussed on Monday.

June 2020, restarting Pembro 14/6 and MRI planned 19/6 to have a better look at a small lesion on my liver, otherwise it’s just 4 enlarged lymph nodes that are causing problems.

July 2020, MRI showed nothing of concern on my liver, and a few weeks later a second Ct was done to see if Pembro working again. It is 4 nodes have started shrinking, but a new node which I can’t feel as it’s internal has grown but it’s felt by next scan in 3 months it will start shrinking as well, so I’m feeling like the blip is coming to an end fingers crossed.

October 2020 CT showed 1 node had increases, 2 were now ok, and 1 further one smaller. Continuing on with Pembro.

January 2021 scan delayed due to covid capacity, finally booked for March.

I’m currently giving extra blood samples (and poo samples) for some research into covid vaccination for people on immunotherapy. At least I could see that at the 3 week stage I had some covid antibodies.

March 2021 scan results, still in a blip. A further 2 different nodes have increased to add to one of the October scan nodes that’s still misbehaving. Consultant talked me through what was discussed at the MDT the plan might have been do a pet scan and based on results do a node dissection. Plan is plod on with Pembro and scan again in 12 weeks, as based on previous activity these nodes might go down again. At least it’s only in lymph nodes at the moment, Less disease than when first diagnosed and not feeling as unwell. Oh well it is what it is.

June 2021, today the 14th is a year since I restarted Pembro after a brief break for covid. Last week my scan was done and results are due 23/6. I’m waiting to see if the March nodes have resolved, but since a few weeks after the scan I have felt a lump about 4cm, reduce to about 2 and then increase in shape but not diameter if that makes sense, so I’m currently awaiting results and any alteration to my treatment plan.

The results are in and mixed, some of the nodes from the last scan have reduced in size but, of course there’s the new one that I could feel in my right groin which is 19mm, and smaller one on my left and a cluster higher up which have a centre that’s dying. It’s always better to have bad or mixed news when there’s a plan. The plan has for the last year been wait things out as one goes down and another comes up. There now seems to be more nodes come up than go down so there must be a best time for a change of approach. Next week I have another appointment to discuss the possibility of a clinical trial starting soon.

July 2021, The clinical trial is Tumour Infiltrating Lymphocytes, I don’t think it’s started yet, but I’ve been discussed with trial managers as a potential option for me, they’ve gone through my records and I’m not ruled out yet. The trial has to be the right option for me and that’s not clear yet as my lymph nodes have a history of fluctuation, if the biggest one shrinks it may not be large enough to harvest cells from it to grow and expand the T cells required for the process. The plan is to continue on Pembro and scan mid August to see what’s happening, and review next steps after the results. I’m open to the trial that seems scary but also currently open to more conventional treatment like a rechallenge of targeted therapy tablets or starting Ipilumamab. At the back of my mind is that the clinical trial is personalised immunotherapy and shows potential of another complete response, needs a performance status of 0 or 1 and so if the timing is not right and things get worse I might find myself not eligible, but if things get better I’m also not suitable. Time to stop overthinking the future, push it to one side and think about now.

August 2021. My lump is slowly getting bigger, my blood tests show LDH has above normal, and my WBC and lymphocytes are below normal. I had a very positive and calming talk with one of the consultants today. Pembro continues this week, melanoma is slow growing, the scan date is being chased and my next appointment will be face to face to look at results and best way forward. I have to focus on I’m well, the lump is still low burden of disease and there are 2 clinical trials they might discuss next time depending on the scan results.one being a TILs trial with Achilles Therapeutics and the other being BRAF based.

http://commercial.cancerresearchuk.org/achilles-therapeutics-doses-first-patient-phase-iii-study-recurrent-or-metastatic-malignant-melanoma

I decided not to ask about the BRAF one yet just take one step at a time. My job is to enjoy the next few weeks and help my immune system.

September 2021 scan confirms disease progression the 33mm area in my groin that I knew about and about 7 other nodal areas, so treatment has to be changed soon, I was talked through Dabrafenib and Tramatenib, Ipilumamab and the above trial. I’ve signed consent for the trial which will remove the most accessible tumour which happens to be my biggest, while I’m recovering from the op to a groin node the node and blood samples will go off to help create some personalised lymphocytes to be reintroduced when I need them sometime between 3 months when the treatment may be ready, or maybe 9 months as last time I had dab tablets they gave up after 8 months. Of course if the lymphocytes don’t come up to the proper criteria I will still be on NHS dab tram treatment, and on failure I still have Ipilumamab. I am putting myself through surgery I wouldn’t of had if I ignored the trial so I have fingers crossed for no lymphoedema. I am also hoping nothing spreads further than my lymph nodes in my wait for BRAF tablets to start about 2 weeks after my surgery. Dab worked really quick for me last time and melanoma is slow growing so have to remember for me things are positive not risk free but positive.

So September 2021 after 57 doses Pembrolizumab ended but the hope of a trial which might again get me to be a complete responder.

My next entry will be about the trial.