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Mum has leiomyosarcoma of the uterine metastasis to bone

miljacklivflo
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Hi there

My mum has just started her chemo of duoxirubcin and after ten days unfortunately caught an infection and has been in hospital with a non existent white blood count.  She has just come out of hospital this evening after her white cell count has climbed to near normal levels.  She is in her fifties.   She had a fibroid 2 years ago and had a full hysterectomy.  Only in histology did they diagnose leiomyosarcoma.  She did not have chemo instead they decided to monitor every few months.  Before Christmas last year it had  metastasised to her third and fourth rib and her pelvis and spine.  This is not usual at all of a sarcoma and Christies do not see this in patients who had uterine sarcomas.  She had 10 blasts of radiotherapy and is now on the chemo. 

We haven't come across anyone in the UK that is in my mums position.  Would be great if we could share stories with any one who is in my mums position.  She is fed up and is angry. She's never smoked, drinked nothing just bring up her four children and help with her lovely grandchildren.    I've recently read about inhibators instead of going down the chemo route.  Letrozole has been a drug to suppress hormones that I have seen on us sites.

Does anyone have any information at all?  Your advice, experience of this awful rare cancer in which 1 in millions gets would be super

Thank you

  • Hello miljacklivflo,

    I'm so sorry to hear that your Mum has been given this diagnosis.

    Here at Cancer Chat we offer support to those affected by any of the 200+ types of cancer so sometimes for members who are affected by a rare type of cancer it can be difficult to find someone else who has similar experiences.

    We do have information on our Cancer Help page about types of soft tissue sarcoma. There is also a link to Sarcoma UK and I wonder if you might be able to make contact with others who have similar experiences through this organisation.

    We also have a team of specialist nurses here at Cancer Research UK and if you think it might help to chat with one of the team you can call them Monday to Friday 9am to 5pm on 0808 800 4040 (free to call from a UK landline).

    Best wishes,
    Jenn

    Cancer Chat moderator

  • Offline in reply to Moderator Jenn

    Thank you.  It is so so rare that the only info I can find is on American sites.   I wish I could get in contact with anyone thst is in the exact position my lovely mum is in

  • Offline

    Anyone had experience with stage 4 leiomysarcoma

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    Hi, I'm sorry to read about your mums cancer. I also see that this was posted a few years ago.

    my mum has the same cancer. She was diagnosed after a fibroid was removed with a full hysterectomy 5 years ago. After 3 years it returned to lung, spine, pelvis, shoulder and peripancreas.

    6 rounds of doxy chemo halved the size of them but was a very harsh chemo for my mum. Then 9 months with no chemo and just scans to check for movement. They moved again so straight onto gemcitabine which is a nicer chemo. This is where we are at now. We go today to see if gemcitabine has worked or not.

    im not sure where you are all at with your mums treatment. A lot of people advise that both ovaries are removed and always ask for the cancer to be tested against hormone receptors. There seems to be no rhyme or reason why this chemo starts. Mums is in her blood so her life is being managed now as much as poss. 

  • Offline in reply to Louise0612

    I know this is an old thread. I have the same - uterine sarcoma stage 4 that has spread to pelvis, causing a hip fracture. That was how the sarcoma was picked up in A&E. I too have found very little info about it and would love to hear from anyone else with similar diagnoses  especially keen to hear about how the hip was treated. I had radiotherapy which I really strugglied with and am just on palliative care now I feel well but an frustrated by lack of mobility. 

  • Offline in reply to Ciji

    My mom is in bit similar situation but its metasis to lung, liver and mediastinal and bilateral hilar lympnodes  she is 67 yrs old, I'm so worried .. 

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    Hi, 

    I'm so sorry to bother you after these many years, how is you're mom now? I'm so worried for my mom and so eagerly waiting for answers which can save her.. I came across ur thread today.. Jus y'day after her 8th session of radiotherapy she did her PET scan and we came to know metabolically active metastatic deposits in left lung, liver and mediastinal bilateral hilar lympnodes  .. I'm so scared of what is going to happen next, can someone pls tell what is the exact treatment to treat her.. I'm scared if I may lose her... Pls help

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    Hi there I am going through the same thing I had a uterine 18cm fibroid which after hysterectomy was found to have lms I didn't receive any treatment just follow ups in January this year I had ct scan only because I told them I did not feel right I know my own body turns out i have recurrence lms on 6th rib down and also gone into my lungs devastated isnt the word i believe that all uterine cancer patients should have at least a course of chemo to make sure now i have to wait for ct guided biopsy to make sure they have not missdiagnosed me it's terrible not knowing my heart goes out to your mum as I only know too well the shock and suffering dhes going through x

  • Offline in reply to Mandie

    HI there My mom has this rare cancer they call it unterine sacomba which i have never heard of before this all started over 2 years ago now when she has fibroids in her womb they was removed by came back she was then referred for a hysterectomy this year in Feb a few weeks ago they referred her for a scan to see if it has spread the results are back and it has reocurred in her left lung also on her pelvis and abdomen too this is all new and a shock to us as we never found out it was cancer till after the hysterectomy which i believe is the ownly way to tell this kind of cancer does anybody have any advice or can anybody who has survived this please inform me of your story it so hurtful as to not knowing the unkowing i am holding so much faith and hope for my mom x

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