Pleomorphic spindle cell sarcoma / lung metastases

Hi The beach - living in Oxfordshire really looking forward to one day getting back to the beach - so welcome to our special little club.

My wife has Leiomyosarcoma and the journey of how she to to that diagnosis is long and winding. It was in her lungs before they found it and the only treatment she could have was chemotherapy.

First round she had was doxorubicin - it worked really well except she had a bit of a side effect when it killed some cancer cells and made a hole - still they managed to cure that too.

Next round of chemo was more gentle Gemcitabine and wonders of wonders it stopped the cancer growing. Her cancer has been stable now for over 6 years - now she only gets a checkup every year of so and her oncologist is really very happy.

We are lucky to live quite close to Oxford so our trips to hospital are not quite so challenging. One of the issues with sarcoma is there are only a few specialist centres - just goes to show how special this form of cancer is.

Janice does look a bit like a Christmas tree in the cat scan - but is is great when the oncologist shows us the series showing no sign of progression. Scan time is always a little bit anxious though but it does get easier with time and the support of the real friends on here.

<<hugs>>

Steve

Hi Steve,

Thank you for lovely words and welcome.

I am so pleased that your wife is doing well that’s great to hear and I hope she continues to stay healthy.

 It really helps to hear other people’s journeys and positivity.

let’s hope we are all able to go to the beach very soon (my favourite place)

Hugs and love  to you and your wife

The Beach  

Oxford is my local hospital, only an hour and a half away.  Very good surgeon. I get 3 monthly PET ct scans. I’m so happy to read that your wife is stable after 6 years!  Gives me hope. 

HI src60, My mother has the same condition and I am trying to navigate and understand the treatments.. How long was your wife on doxorubicin for, and why the change to Gemcitabine? Any help or advice is appreciated. Kx

Hi @kayh - the doxyrubicin was effective at killing the cancer cells - though perhaps a bit too effective in that it caused the lung wall to puncture and so a lung collapsed. The good news is that it was treatable, the not so good news is it took a while to get Janice to a state she was able to take some more chemotherapy. Gemcetabine we were told is usually given as part of a combination but it was hoped that using it on it's own might not cause a recurrence of the lung problems - and more importantly it worked. Of course no two people are quite the same so it is always good to ask questions either on here or with the oncology team; our cancer nurse is fantastic. We did have a spell where we were ping ponging at the hospital between oncology and the respiratory medicine team but (touches big block of wood) we have not needed any attention for a while now outside of a regular check-in.

<<hugs>>

Steve

Thanks I wish you both further improved health.

Hi how did you get on with you’re lung mets , hope you’re well ?