LMS - Leiomyosarcoma diagnosis

Hi Pat Pops 

My wife was diagnosed with LMS over 10 years ago and had mets in her lungs. She had two different types of chemotherapy and the second one has rendered her cancer as stable. Currently she has an appointment with the oncology team about once a year with normally just a x-ray and some blood tests.

Janice never had radiotherapy but I have heard some positive stories from people who have had that route.

Where was your primary? In Janice's case is was likely a fibroid but that as they say is something of another story altogether.

Hope you get the results from the tests soon and can get started on treatment, things often feel easier when we thing something is being done and waiting is really very hard.

<<hugs>>

Steve

Hi Steve, I am unsure what a Community Champion is (please explain if you’ve time). But thank you for your prompt  reply. 
I have had a firm LMS diagnosis from a bone biopsy of a lytic legion in my pelvis. The primary is gynaecological but as yet unconfirmed as to exactly where. I ( like your wife) believe it is from a large fibroid. I would be interested to her that “other story” some time. Thank you. Pat pops 

Hi Pat Pops 

There is a small team of volunteers who have got support and on the back of that started to pay the care forward. There is a bit about this here.

If you click on my name in the title of my message it takes you to my profile that has quite a bit of Janice's story.

<<hugs>>

Steve

Dear Steve, thank you again for another prompt response. I find that giving is often so satisfying and I appreciate your giving your time to doing this given your own situation. 
I have adult children and grandchildren and work in care management in the care of adults with autism for a private company providing supported living and residential care. I perhaps have a small idea of your multiple challenges… sounds like you have been through it as a family.

It is so helpful to know that others can come out at the other end ..”living with “ sounds so much better than the  “incurable” terminology my consultant gave as my diagnosis! But I guess the two are not incompatible? 

Hi Pat Pops

Any news on your tests, really hope you're getting some pain relief and next steps

Take care

Chrissy

Hi! I am a 54 year old with LMS in Pancreas, Liver and a spot in my lungs. Just finished 6 sessions on Doxorubicin and get my final PET scan results on Monday. Last set showed a stable disease (no further spread). With luck i can have part of summer without further treatment. Got to say i am loving src60’s post about his wife - sounds really hopeful. Can’t give much advice, as it will depend on your treatment plan, but good luck and if you want to chat give us a shout! Glyn

Hi SRC60! Just wanted to say thank you for sharing the amazing story of your wife’s LMS. It is truly inspiring to read that she is still stable 10 years on. My last PET scan showed a stable disease and waiting on the results of my last one - due on Monday. So just hoping for a treatment free summer. Thanks again Glyn

Hi Chrissy, thank you for your reply. I am finding this site difficult to navigate … it’s taken me a while to find your reply on here after reading the email version … but hey! 

I am still awaiting results of an MRI to locate a primary but am now all sorted thank you with dates for a 2 week course of radiotherapy on my poor pelvis and then one week off for good behavior b4 starting an 18 week program of chemo.

I take daily back ground opioids for pain management and am also able take a fast acting liquid version when needed. So all good in that respect thank you.

Hope that you are ok and thanks again for your message.

Pat Pops

I also have leiomyosarcoma which started as a fibroid. I had a full hysterectomy with margins but the sarcoma returned within 12 months. I was then given a 2 year prognosis. It seems prognosis is based on stage and grade. As mine has spread to my abdomen and lung it is stage 4 and grade 3 as it is fast growing. I had doxorubicin as first line treatment which shrunk the main tumour but it was growing aggressively again (1cm a month) within 4/5 months. I’ve just participated in a clinical trial at Royal Marsden but this was pulled by the drug company so I’m now on dacarbazine. I have scans every 3 months and realistically am going to be on treatment permanently. I hope like Steve’s wife you are one of the lucky ones. 

Hi Pat Pops

As my post yesterday was my first post sorry I didn’t get the names in. I don’t know where you are being treated but I asked for a second opinion from Royal Marsden and hence was contacted about the clinical trial. As with many cancers there are developments (one man in the next chemo chair was trialling immunotherapy for sarcoma) so I take the view that any treatment buys me time. Like you say ‘living with’ is much better than ‘incurable or terminal’. Apparently T cell treatment may also be a future option. The one thing I have found is that we are all very different; every case is different, every prognosis is different, our reaction to treatment is different so knowing about options is helpful. I hope your treatment goes well.

Janet