Endometrial cancer

Hi MHML

I remember you. I am sorry that you have had some bad news today. Do give the Support Line a call tomorrow if you feel like it would help to talk things through. 

It is true that immunotherapy can have some unpleasant side effects however it can effect people in different ways.

I remember before going on my chemo and looking at the side effects and being really concerned. But I remember being told that they have to tell you all the potential side effects to enable you to make an informed consent. Just because a side effect is listed, it does not necessarily mean you will get it. And if you do there may well be medication or dose adjustments that can help.

I know you had a reaction to paclitaxel but were able to continue with the carboplatin. When you think back to the carboplatin treatment- how many side effects did you actually get. And like with the paclitaxel - if you do have a bad reaction or want to stop- you can. My feeling with the chemo was to give it a go and see how I personally got on. I wonder if this could be an option for your potential immunotherapy?

The next 2 links take you to previous posts in this group about pembro and lenvatinib. 

(+) Macmillan Online Community

(+) Macmillan Online Community

The next two links are the Macmillan pages for the two treatments.

Pembrolizumab | Macmillan Cancer Support

Lenvatinib | Macmillan Cancer Support

Hope this helps a bit

Jane

Thanks Jane, it is so much to take in.  I had some blood tests and ECG yesterday in the clinic and the doctor will decide if I am suitable for the treatment - see how it goes Will keep you updated

Hi MHML, it’s rare (happily) to find someone like you and I with stage 4 womb cancer.  My secondary is 8 small tumours in the lung & one in the peritoneum.  Chemo (same cocktail) ended Jan’24 had minor impact.  On Tuesday will start immunotherapy ( Pembrolizumab intravenous infusion) and Lenvatinib a targeted therapy via tablet.

It is a huge privilege to be offered this treatment, which has only been approved for us last year (retail £7k per infusion, every three weeks).  The minimum hope is to stop the growth but ideally they’ll reduce too.  IMO without the treatment there is only one outcome, increased tumour size and all the complications that brings.  So I’d rather deal with the side effects than this alternative.

Everyone will have there one unique side effects but I’ll post again here to let you know how I get on.

Ann

Good morning Ann, yes it looks that we are in the same boat!  My secondary cancer is in the lungs and the liver, apart from the dry cough I don't have any other signs and feel reasonably well. My pre assessment is this Wed and the treatment starts this Friday.  I am worried about the side effects but have no choice really, the doctor said that it can be stopped anytime. Please let me know how you got on today, good luck, we both need it!

That’s good to hear as I was a bit concerned you were going to let this treatment pass you by.  I had a few issues during pre assessment like kidney & heart both minor but flagged up for ongoing monitoring - do push forward if you can.  

I’ll be really disappointed if they become an issue however we still have hormone treatment up our sleeve.  The doc said two thirds have a good response to immunotherapy versus 40% hormone therapy.

Like you I don’t have symptoms except for the mental anguish…wouldn’t it be great if we could “treat” our thoughts too!!  I’m much better on that score than I was last year but still it’s a cloud all the same. 

The treatment is tomorrow and yes I’ll be sure to let you know how it goes, many thanks for your best wishes.

Ann

hello again,

not sure about the hormonal treatment, the doctor mentioned it but not recommended, that was last year before I had the spreads. My mental health is not even worth mentioning, but I am determined not to take any medication for it, hate taking any tablets anyway and so far managed to avoid it so having to take the oral chemo will be a big change for me.  I will think of you tomorrow. Keep well

So lots more pre-assessment tests today then quite relieved when the infusion got underway.  Feeling tres tired this evening but otherwise fine.  Will start the oral chemo Lenvatinib tomorrow.  I was now aware that it was chemo until I read your post again tonight so am a bit shocked they didn’t mention that to me already.  No wonder the side effects are vast…

I hope everything goes well for you tomorrow.  Let’s keep in touch yeah?

Thanks Ann, yes my pre assessments tomorrow at 9.30 and treatment on Friday.  I must clarify with the nurse tomorrow how to tell the difference which side effect are for which treatment. I am just not looking forward to this but have no choice really. Keep well and I will write to you shortly, good night

Hanna

Hello, I hope your first day after the injection and the tablets is Ok? Did you feel any different?

I had bloods taken today, blood pressure, etc, also was shown a video about the immunotherapy which was helpful and was given more literature. Also was explained everything by a nurse.  It is too much to take in, it is he possible side effects which nobody really knows what to expect.  Didn't really get a clear answer to my question about the side effects.

So all set up for me for Friday pm.  I will let you know how it was, for now best wishes 

Hanna

Day 1 after the infusion has been grand, a bit moody / on edge I suppose but otherwise grand.  I’ll take the first oral chemo this evening, that I guess will be where most of the side effects will come from.  I got through the other chemo OK so am hopeful this will be OK too - does not stop the constant thought of stroke, heart failure and and and, which is ridiculous…a proper nuisance…

Fab that you’re all set for Friday.  We have to remember how fortunate we are to have this treatment available to us and try to make the best of it.  Positive vibes making there way to you for Friday.  Have you considered getting a port for the infusions going forward…thought I would…