Pembrolizumab and Lenvatinib

Hi Bev,

I've replied to you on the womb group. Sorry I can't answer as no experience of those drugs. Hope they are suitable for you.

A x

Hi Bev,

I'm having Pembrolizumab with Lenvatinib although very early days as my understanding is that this dual treatment was only passed recently to use together, but also, to use for endometrial cancer after other options had been used but failed.  

I was diagnosed back in Feb 21 with serous adena carcinoma.  April had radical hysterectomy then started carboplatin in May for 6 months.  Dec 21, no evidence of disease.  July 22 told it had come back and spread to my peritoneum.  Had 4 months of carboplatin, didn't work so followed with 6 months paclitaxel.  This didn't work, so in May this year started a clinical trial as I was out of options. August had to stop. It caused me horrendous pain and my overall fitness level dropped considerably.  Saw the oncologist who offered my this lifeline so of course grabbed it with both hands. 

First treatment went really well and I started the daily tablets straight after the infusion. After the second infusion, the side effects were worse. Nausea, sickness, peripheral neuropathy, loss of appetite and the fatigue was totally overwhelming,  BUT, I saw my oncologist on Tuesday, who has never really given much in the way of positivity, and she was excited to tell me that my CA125 level had dropped considerably and my bloods were good, which indicates to her that this treatment is working. My scan for next week has been postponed until a full 3 months after I started treatment to give a more accurate picture. 

With this in mind, I obviously have to say to you, GO FOR IT! 

If this is working, I can definitely contend with the side effects. 

The infusion is given every six weeks, so if it means me feeling rough for a couple of weeks each time then I don't mind especially if it is doing what it's supposed to. 

Best wishes from Helen (who is also wanting to live well for as long as possible )

Hi Bev, I'm just here to say good luck with your decision  and the treatment. We're there's treatment offered there is hope.  Hope keeps us all going. Keep us up to date, keep posting xx

Moi

Thank you. I’m feeling really down today and just want to curl up in a ball and cry. I’ll probably go for the treatment but I just can’t get excited about it. I feel like I’m beginning to grieve for the life I thought I would have. 

Thanks Helen, it sounds very positive. I was fine yesterday but today I just can’t seem to feel excited at all. I keep thinking - so what if it works? It’s only delaying the inevitable. Feeling so fed up tonight.

Hi GCL, I think you are going through what most of us have here. Grieving for the life you thought you would have is normal and comes when you are having a down day!

If these drugs work, they could work for a lot longer than you imagine and by that time, they may have come up with another drug for your type of cancer. The new drugs are amazing. I took the chance on a Trial Drug and have never looked back!

What I don't want to hear from my Oncologist is "We have nothing else you can try!!" Until then, I will keep going and try anything suggested because they wouldn't mention it if they didn't think it might work. These drugs are too expensive to waste!

Life May never quite be the same but it's still your life!

Hi Bev as Annette said we've all had and occasional do still have them. It was a down day. If you feel like crying then cry if you want to scream then scream, just listen to your body, how do you feel today. I hope your feeling a bit more yourself. After one of them days I usually take my temper out on the hoover, shower do my hair and nails . Just be kind to yourself. Your life with treatment and after treatment is what you can make it. Don't greave something you haven't had yet. Sending hugs xx

Moi

Thank you all for your replies. The grieving has passed for now. No doubt it will come around again. 

We’ve decided that I’ll have the treatment, if it’s suitable- and hopefully it will be. I realise that I do actually want to live and live well, so I have to keep trying. My daughter, Sam, who is 43 and has had a tough few years with relationship breakups and her own dad’s illness, is finding this very stressful. She’s been given some time off work and prescribed Sertraline. Cancer hits everyone around you, but we’re stuck in the middle of it. 
I read this yesterday and feel inspired by it -“I will not die an unlived life, I will not live in fear of falling or catching fire. I choose to inhabit my days, to allow my living to open me, to make me less afraid, more accessible, to loosen my heart until it becomes a wing, a torch, a promise.” I want to claim it! I keep saying it aloud. 
love to all. 

I have experience of Pembrolizumab but not Letvatinib (my cancer is triple negative breast cancer). I had it for about 4.5 months before suffering a fairly serious immunotherapy related adverse event from it, so the treatment has been halted at the moment. It’s worked very well on the cancer, and apart from catching the short straw on the various things that can go wrong, it had been side effect free when compared with chemo. I’d make the same choice to have it in a heartbeat despite what’s happened to me, as it’s about the only path to a durable remission that I can see. I am currently thinking though whether to push to restart it. If you want to read what’s happened to me, I have a blog in the blogs section called ‘a trip with triple negative breast cancer’, where there are several recent entries dealing with the IRAE and its aftermath. Beware it’s describing a serious event, but something that rarely happens. Your own experience wouldn’t be identical to mine, it works really really well without issue for a lot of people. 

Thank you so much for this. It’s so helpful. Are you on any treatment at all at the moment?
I think we’ll go ahead and try it. I’ve been feeling much more positive and hopeful lately. I want to live life and not just wait around to die so it feels important to take what’s offered. It’s the first hopeful treatment for my cancer for years so I need to try - if only for more data for others in the future.

thanks again,

Bev