Living with incurable cancer - incurable patients only

This group is specifically for people with an incurable or terminal diagnosis. Whether you need to talk about dying, or about making the most of your life, you can discuss your feelings openly here.

One door closes...

daloni
Posted by

Dear friends

I’m on my way home from the hospital after picking up ct scan results.

The bad news is that the cancer has grown since the start of the immunotherapy in October. Boo. Mostly the tumours are still too small to cause me problems but they’ve grown enough to take me off the trial.

My doc did have something else to offer me. It’s another trial, this time of a drug that inhibits DNA repair. The theory is that this drug, combined with the brca mutation (which also inhibits DNA repair) might give the cancer a double whammy. It’s the same theory as the PARP inhibitor that I took back in 2016. Anyone with a science interest, it’s an ATR inhibitor known as AZD6738. It comes as a tablet. Not much is known about the side effects but they include the usual - nausea, fatigue, anaemia.

Here is a link https://www.cancerresearchuk.org/about-cancer/find-a-clinical-trial/a-trial-looking-AZD6738-radiotherapy-advanced-solid-tumours-patriot

They hope to start me on this either just before or just after Christmas.

Here I go again.....

Xxx

kirky68
Posted by

Oh Daloni what a blow. Hope this trial is effective for you and doesn't have too many side effects. 

Big hugs P xx 

Alive
Posted by

Hi Daloni, so sorry to hear this, especially as you were looking so well when I saw you in York. I really hope that the new trial is successful for you. It’s good news that it was there waiting for you as the present one wasn’t working! The timing couldn’t have been better. 
Enjoy Christmas as much as you can and try not to be too worried about this new trial.

Thats all I can say really, but I just wanted you to know that I am thinking of you and will keep you in my prayers.

love and hugs

Maggie xx

Johnty
Posted by

Dear I’m sorry to hear your immunotherapy treatment isnt playing ball, but glad to hear you are going to be straight back in the game with something new. I always think of patients in trials as pioneers discovering new lands, hopefully you will benefit but you are also blazing a trail for those who come along later. Without people like you we couldn’t have the progress in cancer drugs that has happened in recent years. So good luck with this new treatment.

best wishes

jane

 “ A trouble shared is a trouble halved “
fighting girl
Posted by

Dear daloni

i have been thinking of you today ,knowing you were getting results

not the Xmas present you wanted ,but the next trial awaits ,you never know when you will hit gold and the drugs will work their magic .If only the oncologists knew what will work and for who 

Regroup ,regain strength and onto the next treatment 

kindest positive thoughts 

janet

xxxxxxx

Roobarb
Posted by

Hi pah immunotherapy is overrated anyway!

Very interested that they are putting you on the patriot trial....one of the reasons I was thinking of getting a second opinion in London was with a hope of this trial.  The reason I am interested is because there is a lady with ovarian who has been stable on this drug for 20 months....they don’t really know why but she progressed on chemo and everything, and then onto this and stable. A phase 2 trial (called Atari) is starting, hopefully any day now for ovarian clear cell ladies like me, combining this drug with a PARP.  So it is definitely a hopeful direction, although obviously I do not want to give you false hope either.  I have everything crossed for you.  

I guess you are feeling a bit blue, with seeing progression etc but I hope you pick yourself up and this drug gives you stability and no side effects,

much love heather xxx

ruthjp
Posted by

Hi,

sorry you had some bad news but good you have another drug to try.

i am going to restart the targeted drug lenvatinib once the cardiologist finds a way to control my blood pressure as the drug sends it very high.

sounds like you have hope with this new drug and good you’re tumours are still small.

i hope you find the side effects ok.

i am enjoying having a drug break for Christmas. Hope you can enjoy your Christmas and start it afterwards.

love Ruth xxx

Ruth age 67

 acc R submandibular gland wth lung mets liver met and brain mets 

daloni
Posted by

Thank you my friends. I wasn’t really expecting good news as I have been able to feel my liver (where the largest tumours lie and the so called “target lesions” being measured for the trial) growing over the course of the last two months. Ok I’ve lost weight and fluid from around that area but even so it’s evident. So today’s news wasn’t a surprise but of course it’s a disappointment both personally and for the trial scientists. There were high hopes that the dose I was on  would prove therapeutic. 

Of course it raises the question of whether it was worth taking part? It was a lot of work involving multiple hospital visits and a couple of overnight stays. I’d end treatment days by literally crawling upstairs and into bed, fit for nothing. My firm answer is yes. I went in with my eyes open knowing I might well get no personal benefit. I told my doc as much when I signed up, saying in my view it was one for the scientists. 

There were some side benefits. The team at the UCLH early trials unit are wonderful. They were all over me like a rash. They picked up my deteriorating kidney function and eventual kidney death and gave the urologist at my local DGH the kick up the bum he needed to sort out the stent. They picked up the tumour/thrombus in my abdomen, referred me to a haematologist who started me on blood thinners. As a result the swelling in my abdomen and legs is much improved, I’m much more comfortable and the risk of a potentially fatal pulmonary embolism is much reduced. Those are big wins. 

Today was fascinating in its own way. I looked through the images of my scan with the doc. I couldn’t see much except the major organs. My left (functioning) kidney looked normal. About the size of a 50p piece and obviously a kidney. My right (non functioning) kidney was all bloated and swollen, about the size of my fist. No wonder it hurts. 

fascinating info. My doc described the new trial drug as a “next generation” PARP inhibitor. I had good results but harsh side effects (fatigue mostly) from Rucaparib. It controlled the cancer for 15 months. I can see the rationale for combining the two. The rationale for giving me the ATR inhibitor makes sense to me but, as my consultant pointed out, nothing is known about the efficacy of ATR inhibitors in patients who are PARP resistant. It could go either way. We shall see. Good luck with your search for the right trial. 

I had better stop now. Sorry about the information dump. Thanks for listening (as it were) 

xx

anndanv
Posted by

Hi Daloni, well you are right, it was definitely worth while going on this trial in the first place when the team has managed to pick up and sort a lot of ongoing problems, so that was good and that urologist deserved a big kick. I do hope you are a bit more comfortable now that these other things are in hand.

I think the Oral drug trials take less out of you than the infusion ones and hope this is the case once you start it. You have been through so much but maybe this is just the one for you! I have read up on these trials and they do sound promising. A double whammy is just what's needed! Maybe you need a double whammy too !!

Love Annette x

Tinalay
Posted by

Oh Daloni, I'm so so sorry to hear this. It's not fair. 

I'm glad you feel it was worth doing the trial and you got some unexpected benefit from it even though it hasn't done what everyone was hoping for. 

It seems you have to invest so very much to take part and then deal with the disappointment when things don't go your way, definitely not for the faint hearted.

As my Consultant said these trials typically help those coming behind us, and if we've had treatment that was successful it's because of those who were ahead of us.

I'm very relieved there's another plan, and hope it includes some time off for good behaviour. 

It would be lovely to think you could take time out to spend with your girls, your puppy and your big crazy Christmas swimming family.

Sending enough love to blow your socks off and gentle hugs   xx

Tinalay 
KTatHome
Posted by

Hi Daloni, It sounds like you’ve had a very frustrating day, been through lots of emotions but have come out the other side rationally and trying to put a positive spin on everything. If there was a superwomen award, I’d give it to you. I’m wishing you a merry Christmas and a happy new trial. 

KT 

What is a Community Champion?

You can call the Macmillan Support Line on 0808 808 0000 (7 days a week, 8am-8pm) or contact them by email.

daloni
Posted by

Hi

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

tvman
Posted by

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

My philosophy is simple, love life and family.
Peggy24
Posted by

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

Keep strong and positive x

daloni
Posted by

Hi

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