ess low grade

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margew
margew Member Posts: 2
edited March 2023 in Uterine/Endometrial Cancer #1
Anyone with ess low grade taking megace. I was diagnosed with ess 18 months ago and after surgery have been taking high dose megace. Wondering beside the constant hunger what symptoms are you having?

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  • lindaprocopio
    lindaprocopio Member Posts: 1,980
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    I'm not sure what "ess" is.
    I see no one has answered your post. For me, it is because I am not sure what "ess" is. Can you please post again. Cancer has it's own lingo, doesn't it?

    I know there has been past discussion on Megace. If you use the 'SEARCH' box on this page, and type that in, the earlier discussions on Megace should pop up. Best wishes & BIG HUGS!
  • jjmb126
    jjmb126 Member Posts: 14 Member
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    I'm not sure what "ess" is.
    I see no one has answered your post. For me, it is because I am not sure what "ess" is. Can you please post again. Cancer has it's own lingo, doesn't it?

    I know there has been past discussion on Megace. If you use the 'SEARCH' box on this page, and type that in, the earlier discussions on Megace should pop up. Best wishes & BIG HUGS!

    I think it is this
    endometrial stromal sarcoma which infiltrates the muscle layer of the uterus and makes the endometrium thick and "boggy," and builds polyp-type tumors.
  • linjay
    linjay Member Posts: 3
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    jjmb126 said:

    I think it is this
    endometrial stromal sarcoma which infiltrates the muscle layer of the uterus and makes the endometrium thick and "boggy," and builds polyp-type tumors.

    ESS
    Hi jjmb126

    I have only just recently found this site and read your discussion. I was diagnosed in 2002 with low grade Endometrial Stromal Sarcoma and was treated with Megestrol. I had to have 264mg per day for the first year and was gradually reduced to 320mg daily and yes it does increase your appetite, so was grateful the dose was lowered. I still have annual check ups but that is all and fortunately the cells that were left on my bowel have stayed dormant up to now. It is nice to be able to contact somebody else with this as the cancer is so rare and not many people have heard of it. I have had 2 deep vein thrombosis since so am also taking Warfarin the blood thinners to keep them at bay. I started with a small red patch on both sides of my neck, which over time have now joined up and did get a lot of aches and pains in my joints, but these have subsided over time.
  • julia12756
    julia12756 Member Posts: 22 Member
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    linjay said:

    ESS
    Hi jjmb126

    I have only just recently found this site and read your discussion. I was diagnosed in 2002 with low grade Endometrial Stromal Sarcoma and was treated with Megestrol. I had to have 264mg per day for the first year and was gradually reduced to 320mg daily and yes it does increase your appetite, so was grateful the dose was lowered. I still have annual check ups but that is all and fortunately the cells that were left on my bowel have stayed dormant up to now. It is nice to be able to contact somebody else with this as the cancer is so rare and not many people have heard of it. I have had 2 deep vein thrombosis since so am also taking Warfarin the blood thinners to keep them at bay. I started with a small red patch on both sides of my neck, which over time have now joined up and did get a lot of aches and pains in my joints, but these have subsided over time.

    ESS
    Hi Linjay,

    I joined this site first after also being diagnosed in Jan 2012 with High grade ESS which was changed to indeterminate grade. This site is great but I'd like to suggest another site to join also. The site is dedicated to all grades Endometrial Stromal Sarcoma (ESS) and Undifferentiated Endometrial Sarcoma (UES). While this message board has been wonderful in support, the yahoo group also has lots of information about treatments that you may find informative.

    http://health.groups.yahoo.com/group/Endometrialstromalsarcoma/

    Good healing to you,

    Julia
  • bjharr
    bjharr Member Posts: 2 Member
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    I was diagnosed with low grade ESS in 2016. I opted out of that experimental megestrol. I have had CT and blood work surveillance on going. Just had more lymph nodes in groin removed. Still recovering since Nov 22. I now have lymphedema and am in therapy.

    My surgeon made a big mistake by not searching his records from the surgery in Dec 2015. Hoping to recover eventually from too much body fluid.

  • Forherself
    Forherself Member Posts: 998 Member
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    Welcome bjharr, you have commented on a thread from 2012. If you would like more comments, you can create a new post by clicking on the blue plus sign to the right. Lymphedema is no fun. I hope your therapist can improve the fluid buildup. There are other women here with lymphedema.

  • bjharr
    bjharr Member Posts: 2 Member
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    Are there any recent comments on Endometrial Stromal Sarcom

  • Forherself
    Forherself Member Posts: 998 Member
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    I don't remember anyone posting about ESS. But there is uterine sarcoma. It is called Malignant Mixed Mullerian Tumor. Maybe the women who have this type of cancer will know more about ESS. They have a group on FB that is very active.