Womb (uterus) cancer

A place for people affected by womb cancer (also known as uterus or endometrial cancer) to support one another, ask questions, and share their experiences.

Update on the clinical trial

daloni
Posted by

Hello to my dear friends who remember me 

I don’t post here about myself too often but though it was high time I brought you up to date. Those of you who remember me will know I was diagnosed with stage 3c2 grade 3 uterine serous carcinoma five years ago. I had all the treatment but the cancer came back and I was told I was incurable just over three years ago. I’ve battled my way through various treatments since then and in January I started a clinical trial of chemo in combination with a new drug that aims to help my own immune system fight the cancer. It’s called an arginase inhibitor and it’s so new it doesn’t have a name, only a number. 

Yesterday I finished the fourth of six chemo cycles. So far, so good. The CA125 has fallen steadily from 1600 at the start to 191 at the half way point. A scan in February (after the first two cycles) showed all my tumours had shrunk. I have another scan just after Easter. 

I am pretty tired from the chemo and my hair is falling out but it’s not too bad. I do spend a lot of time going to and from hospital but the trials unit where I get my treatment is very nice. Superb care. 

So that’s my news. Onwards and upwards! Or more accurately flatwards  - I can’t do hills anymore  

Xx

Nannydeb
Posted by

Bless you......that is such encouraging news xxxx

Stay strong, sending you hugs 

Xx

Debs x
hysteria53
Posted by

wow, its sounding pretty positive Daloni, but gruelling. What a dramatic fall in CA125 levels but I admit I dont really know what that means, only that it sounds impressive. Keep up the good work lovely lady xxx

daloni
Posted by

Thanks! CA125 stands for cancer antigen 125. It’s an inflammatory protein so we all produce it and the normal level is below 35. Some gynae cancers result in changes in the level of CA125 so doctors use it as a marker - if the CA125 is going up, the cancer is likely to be progressing; falling levels of CA125 indicate it’s shrinking. It’s not very precise - more of a red or green flag that things are going badly or well. 

So the drop by more than 80% since the start of the trial is very encouraging. 

You tend to hear more about CA125 in ovarian cancer. It’s not often a useful marker in womb cancer so doctors don’t routinely measure it. Uterine serous carcinoma is often more like an ovarian cancer at a molecular level. I was once told I had “ovarian cancer in the wrong place”. Go me. 

Xx

NannyAnny
Posted by

Hi Daloni,

That sounds very encouraging! 

Wishing you all the very best xxxxx

mum999
Posted by

Wow , what a lady!! you are so brave doing all these treatments. SO very glad that this one seems so positive . take care   xxx

phin
Posted by

Hi Daloni

So pleased to hear the results of your new treatment. It is lovely to know that you are getting rewards for your hard efforts. Both you and your lovely girls deserve this so much.

I am doing much better following my on going problems after the radiotherapy. Had a scan 2 months ago which shows no evidence of disease which is amazing as it is 4 years to the day that I haemorrhaged and was told within 5 hours in A and E that it was cancer. It was then diagnosed as grade 3 serious and the journey began.

You were very instrumental in keeping me sane in those first few months and I think of you often. I was so sad to read of your family problems life just seems so unfair.

Sending you my love and respect

Lesley xx

daloni
Posted by

Hi Lesley 

How lovely to hear from you - and how wonderful that you have now gone four years! I’m so happy for you. I do remember back to when you came onto the community and what an awful time you went through. So shocking. I’m so glad I was able to help. It feels like passing a baton down the line. I remember the support I got early on from a lady called Linda. It felt like I’d been in the dark and she had turned the light on. Then I was able to help you - and so on. 

I am doing fine now after the bomb went off in my life a year ago. I’m divorced, the house is in my name, I have my pensions and a good monthly settlement so we are fine financially. The girls and I do lots of fun things. We go to the theatre and spa days  and off on short trips between chemo cycles and treatments. I have lots of friends and a great family and so much love in my life and I’m thankful for that every minute of every day.

The  ex is getting married again week after next as he has a baby on the way. So much for his “new and exciting” life. I still think his actions were unforgivable - particularly towards the girls. But he will reap what he has sewn. My older daughter wants nothing to do with him. The younger one is less hard line but barely sees him. He has lost so much love from his life that really I have to wish him well and hope he can find a way to forgive himself. 

Lots of love to you dear Lesley 

xx

Lara lou xx
Posted by

Hi daloni, wahoo I’m so happy to read your post, excellent news and well deserved, you have battled and never given up and still been there for everyone else, I admire you for all you have been  through and for how far you have come, you will always be my inspiration, I’m glad you and your girls have great times together, As for  your husband he is not worthy of you, and karma will get him, maybe one day he won’t be well and she will leave him like he did you, I’m not wishing it on him obviously, but I do believe in karma and at the moment it has his name on it lol, great news though hun, thank you for posting the update, take care my lovely xx

Don’t ever give up hope, there are earth Angels all around us and Miracles really do happen xx
Stargazy
Posted by

Hi Daloni,you are such an inspiration to us all,wonderful news that your new treatment is having good results.,so happy for you and your girls.

Xxx

.

  1. Stargazy
GBear
Posted by

This is fantastic news . The thing with modern medicine is that there is advances in medicine all the time and all these trails help both research and if they work to give hope to many cancer patients like yourself. I am truely delighted to hear this news, you've gone though a lot and not just your illness, yet you are a prime example why these trails are needed. Onward and upwards!

And a huge hug too

  GBear Xxxx 

What is a Community Champion?    Womb cancer forum  

Call the helpline for free on 08088080000, 8am to 8pm everyday.

“Don't live in the past, but live for today” 

Arla
Posted by

Hi Daloni,

What great news, I remember your february scan showing really promising results, those CA125 numbers are amazing and must be a big boost.

i hope that your next few cycles are kind to you and you get to enjoy plenty of this lovely weather that's starting to appear. 

Lots of love 

xxx

Fairycake
Posted by

Hi Daloni

Thats good news about the tumours shrinking and CA125 levels dropping - definitely worthy of a little happy dance  Xx

process
Posted by

So very pleased for you May you continue to get good positive results .

worried45
Posted by

Dear Daloni- that’s really happy news, I’m so glad to hear the results are so positive. Wishing you and your family a happy, sunny, relaxing and peaceful Easter xxx