One door closes...

Hi ruthjp

It must be such a relief to know you’ve got the go ahead for the Lenvatinib. It’s so great you are able to enjoy the break rather than spend your time champing at the bit to get going again. I really hope your team can find a way round the blood pressure problem. It seems like a common side effect of this drug so you’ll not be the only one affected by this. 

How do I know this? I looked it up. Oddly enough, my consultant’s preferred option would be to give me Lenvatinib in combination with Pembrolizumab, an immunotherapy drug. It’s a combo that’s shown promise in patients with advanced endometrial cancer who aren’t MSI high (a key marker showing whether the Pembrolizumab will work). It was approved in the US, Canada and Australia simultaneously this autumn but has not yet got the go ahead in the U.K.  

I am droning on. Key meetings such as yesterday’s always send me scurrying to the internet for a bit of back up reading. It’s one way to get back to sleep

xxx

Hi 

Your post is addressed to friends so I'm making a bit of an assumption by answering!

A good news bad news kind of day for you, Daloni. So sorry to hear that your tumours are increasing in size, but if there's anything positive to take from that news it's that as you say, they're still too small to cause you problems, physically yes, but mentally?.

Of course, even your worst enemy, if an enemy could be unearthed, would be wishing you all the best with your new  drug that inhibits dna repair. Let's think about this, isn't it amazing that the discovery in the 1950s of the helical shape of the dna molecule has now led to being able to actually produce a drug that can inhibit dna repair. Here endeth the science lesson because I don't know about you, but my brain is hurting already. In truth though, I am a great fan of science. 

In short, good luck with the new treatment and may it work wonders for you, Daloni. You deserve it.

Tvman xx

Hi Daloni sorry for your news but with a rest for your body it should do you good.

I reacted to my first infusion of Atezolizumab ended in Hospital twice had infection in liver.

Just seen Doctor and liver seems better so try again..

I think my break away from it alll helped although I worried about the delay

take care enjoy the rest xx

Hi Peggy24

Ooh that sounds nasty. Infection in your liver? I’ve not experienced that particular delight but I know how infections that leave me hospitalised also leave me feeling vulnerable and unsure of my body. I get a sense you might feel something similar after your experience? 

I am glad to hear the liver is better and I have my fingers crossed that the next infusion passes off uneventfully 

xxx

tvman you’re a twit. That’s an insult reserved for friends

xxx

I thought that may have been the case, sigh !

xx

Oh  I’m so sorry to hear this. You put yourself through so much to be on the trial and to find out it hasn’t worked is beyond disappointing. I’m pleased there something else for you but I hope you can have a rest with your three gorgeous girls before you get back on the treadmill. Much love. J ️

Hi,

thanks for the reply and for looking up lenvatinib.

i was interested to hear it could be used with prembrolizumab as this is also used for adenccystic carcinoma which I have but works better if you have PDL1 which I don’t have.

there is the abscopal effect which means taking 2;things together the treatment works better.

i will ask my oncologist when I see him.

i am still unsure if I can cope with the side effects of lenvatinib.

i hope your new trial helps you.  these drugs all have unpleasant side effects and then it is disappointing if they are shown not to work. It does however give us hope for the future.

love Ruth xx

Daloni, sorry to hear the trial didn't work for you but glad they have another one lined up for you.I know that sinking feeling when they say things have grown, its awful isnt it . I start 4 weeks radiotherapy tomorrow and if that doesnt work i may go on a trial at the Christie of a watered down version of Docetaxel. All the best Lynn 2

Well today was a funny old day. I had blood samples taken, urine and an ecg then met the consultant in charge of the patriot trial. He wants to review my scans and check out whether this trial is really the best option for me and check whether it’s safe to take the biopsy the trial requires. There’s an MDT tomorrow. My oncologist - the senior registrar who’s taken charge of my care for the last few months - is still convinced we will go ahead, likely in the next fortnight. 

I feel rather thrown by it. I put my energy yesterday into looking forward with a firm plan in mind. Now it feels less secure. 

I think I’ll just go with the flow. There’s not much else I can do really. I feel exhausted so a rest would be good. 

I hope you’re all surviving the winds. It’s been blowing a gale down here and I doubt we have the worst of it 

xx