Leiomyosarcoma

Hi Vicky

I'm 46 and diagnosed with Leiomyosarcoma in January, I've just had the 2nd surgery on my Vulva.

Like you I have only briefly spoken to one gentleman on here whose wife has it, with it being very rare I'm struggling like you.

I'm awaiting another CT scan this week and speaking to surgeons Friday to confirm the margin etc. 

I'm under Nottingahm specialists, happy if you want to chat

Take care

Chris's x

Hi @vicky - that gentleman would be me.

Janice has been through two different types of chemotherapy - the first Doxorubicin has the rather unpleasant side effect of causing a lung to collapse - but safe to say after six of those they seemed to have found a cure that works. The second was gemcetabine and - touches rather large block of wood - that seems to have rendered her LMS stable - a new gold standard in our life.

Pre covid when we were sat waiting for clinic appointments another patient, under the same consultant, asked us what he looked like - at that point we had not seen anyone else. If actually felt good to see his deputy later on as Janice was no longer considered the most important case since she was doing so well.

<<hugs>>

Steve 

Hi Vicky, I'm on my 5th chemo, my radio therapy was halted after 26 sessions. Very unpleasant. I'm 71, living in Spain. The only reply I had on here was Steve, whose wife bravely fights on! I am waiting for my next MRI scan, fingers crossed. Today's side effect is a white tongue. Taste buds are kaputt at the moment. You are not alone, and now, neither am I.

It is rarer than I ever imagined. Surgery is not an option for me unless the scan shows otherwise. I try to stay positive but have bad down days. Today's goal, a lunch!

Poshpaws

Hi there, just to let you know, I'm here in Spain, ready to chat. Reading small print isn't so much fun as my eyes seem to be a favourite outlet for the chemo lately. I'm very positive and think perhaps surgery may again become an option in the future, if my next scan shows some reduction.

I wish I had someone here in Spain to talk too.

Poshpaws

Hi

While I cannot say I know anyone in Spain with Leiomyosarcoma when I tried putting Spain in to the search box and got this.

A different set of cancers but drawn together by being in Spain with possibly some ideas of more local support options.

<<hugs>>

Steve

Hi Vicky,

My name is Dimitris 43 years old and I just joined the community. I was diagnosed with stomach leiomyosarcoma in September 2020 and as a result my stomach was removed.

Although my first scan was clean in December 2020, in March my scan showed reccurrence in multiple organs and my onchologist explained that my cancer is now terminal and I’ve been given a few months to a couple of years. He suggested very aggresive chemo to try and delay and control the situation as much as possible. 

I started chemo cycles in March 2021 and have now completed 4 cycles with the aim to do 2 more. I find chemo and the side effects very difficult to deal with and I am struggling especially the 10 days after each cycle. However, I have seen some results in that the effects of the cancer are reduced. After my last scan my condition seems a bit stabilised in that the tumours are not growing further for now.

On the mental side, as with most people this was something devastating and very difficult to handle and absorb.

My family and I received immediate counselling which we all found very helpful. In fact, I found it so helpful that I couldn’t recommend it more. Not only has it supported me in dealing with the fact that my condition is terminal and my life is coming to an end but also it helped focus and make the most out of my life and try and enjoy as much as I can any precious moments I’ve got left.

Of course it is a horrible journey that we have all embarked upon and there are so many times that I feel lonely, sad and devastated. But there are many days also that I manage to leave my condition on the side and live happy moments. And this is the result of my immediate and continuous counselling.

This is an impossible situation that you are going through. I am here to chat if you feel like it.

Take care and I hope you find the strength to continue.

Dimitris

Hi I ve just been diagnosed with uterine leiomyosarcoma and am also at nottm. How are you doing? My case gets more complicated as I go along and still having more scans before they decide what to do with me. Was told it was in one place now they are saying they might have that wrong

Feel like the weeks drag into months with no action 

Annie x

Hi Annie,

Sorry to hear about your diagnosis, I know how it feels. I'm doing good thanks, the surgery to remove the Leiomyosarcoma has worked and for me it hasn't travelled at this time, but it was a hard battle to get answers and surgery earlier this year, like you taking many weeks to get resolved.

I'm now on 4 monthly monitoring between Gynae and Colorectal and it's been a very emotional.time, please. Let me know how you get.on and reach out if you need to chat.

Take care, Chrissy xx

1. Hi,  I have a uterine sarcoma too, diagnosed in July. Had full hysterectomy in august. What is nottm? 
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