Serous uterine spread to lungs, bones and adrenal glands

pgdaughter
pgdaughter Member Posts: 22
in Uterine/Endometrial Cancer #1

Hi, 2013 Feb mom was diagnosed with serous uterine cancer in her womb. Surgery, chemo, radiation. Fast forward Jan 2017, she has just found out serous ca is back this time in lungs, bones and adrenal glands. Understand not curable, but is there anyone here with similar experience who can share experience/information on potential treatment that can turn the serous cancer into a chronic condition?

Comments

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,486 Member
    edited January 2017 #2
    Oh pgdaughter, I am sorry to

    Oh pgdaughter, I am sorry to hear your news.  I think if you read a few of the threads you might see where people have had several different types to beat back the beast.  Some have had multiple rounds of chemo over the years and Lou Ann is on an immunotherapy drug.  

    It is a terrible disease.  Your family is in my prayers. 

  • MAbound
    MAbound Member Posts: 1,168 Member
    edited January 2017 #3
    Agree

    So sorry for this setback for your mom, but I'm glad to see that you realize that there is good reason not to lose hope in the face of it. I agree with NoTime that there is a lot of good posts from people who've had to deal with a similar situation that can point you in a direction to research and ask questions of your mom's cancer doctor(s). I have/had endometrial adenocarcinoma and just finished first round chemo and radiation. Megace (hormone) therapy is next for me.  Just start looking at posts backwards from the most recent and you'll come across a lot of helpful information that is more specific to you situation.

  • Lou Ann M
    Lou Ann M Member Posts: 996 Member
    #4
    So sorry

    So sorry to,hear about your mother.  I know this is hard on the whole family.   My cancer Metastizised over three years ago through my lymphatic system.  I staterd with mets to my neck, liver and several spots in my abdoman.  Later one near my heart and between my intestines.  I have been on a variety of chemo since then.  Right now I am on an immunotherapy drug and am getting radiation on the tumor in my neck.  It is the only one that hasn't responded to the immunotherapy.  If possible try an get genomic testing done .. it can tell if there is a chemo that has. Better chance of working.  I had one, but I had a rather severe reaction to it.  Don't give up hope there are many new things in the works.

    Hugs and prayers, Lou Ann

  • Nellasing
    Nellasing Member Posts: 528 Member
    #5
    Pgdaughter

    So sorry to hear that you and your mom are once again facing this.  I don't have anything specific regarding your question but do want you to know you aren't alone and that we'll all be here cheering you on and keeping you in our thoughts and prayers.  (((HUGS)))

  • pgdaughter
    pgdaughter Member Posts: 22
    #6
    Haven't seen specific to serous in lung

    Thank you for your messages of support. I started this thread as I was combing through posts backwards and didn't see any reference to serous having spread to the lung and was hoping someone out there might have had an experience and potentially treatment information to share. Will keep looking

    Take care. Prayers and good vibes to all of you

  • Kvdyson
    Kvdyson Member Posts: 790 Member
    edited January 2017 #7
    PG, I've been trying to keep

    PG, I've been trying to keep a list of the different meds that people have taken for recurrences and I'm happy to share it here: Doxil, Avastin, Keytruda, Opdivo, Lynparza (Olaparib), Topotecan, Metformin, Trabectedin, Megace and Tamoxifen

    Hopefully one or more can be helpful to your mom. Wishing you both strength and peace. Kim 

  • danni93
    danni93 Member Posts: 6
    edited January 2017 #8
    Lou Ann M said:

    So sorry

    So sorry to,hear about your mother.  I know this is hard on the whole family.   My cancer Metastizised over three years ago through my lymphatic system.  I staterd with mets to my neck, liver and several spots in my abdoman.  Later one near my heart and between my intestines.  I have been on a variety of chemo since then.  Right now I am on an immunotherapy drug and am getting radiation on the tumor in my neck.  It is the only one that hasn't responded to the immunotherapy.  If possible try an get genomic testing done .. it can tell if there is a chemo that has. Better chance of working.  I had one, but I had a rather severe reaction to it.  Don't give up hope there are many new things in the works.

    Hugs and prayers, Lou Ann

    Hi Lou, im so sorry to hear

    Hi Lou, im so sorry to hear that yours has metasized!  did you try any diets between diagnosis?

    my mother aged 54 was just diagnosed with stage 3 MMMT uterus and needs some positivity and i would love to hear how you're doing! thank you :) 

  • Lou Ann M
    Lou Ann M Member Posts: 996 Member
    #9
    danni93 said:

    Hi Lou, im so sorry to hear

    Hi Lou, im so sorry to hear that yours has metasized!  did you try any diets between diagnosis?

    my mother aged 54 was just diagnosed with stage 3 MMMT uterus and needs some positivity and i would love to hear how you're doing! thank you :) 

    No.real diets

    i have,not tried any specific diets.  I have had a lot of trouble eating anything at times.  My taste really disappeared.  I eat what I can and if I want a DQ blizzard I enjoy one.  I really crave salty things more than sugary food when I am hungry.  Sometimes a little salty and a little.sweet together help do away with some,weekness and dizziness that I had sometimes. I kind of waver between eating very healthy and I don't know how much time I have so I might as well eat what I enjoy.

    Hugs and prayers to you and your mother, Lou Ann

  • pgdaughter
    pgdaughter Member Posts: 22
    edited January 2017 #10
    Kvdyson said:

    PG, I've been trying to keep

    PG, I've been trying to keep a list of the different meds that people have taken for recurrences and I'm happy to share it here: Doxil, Avastin, Keytruda, Opdivo, Lynparza (Olaparib), Topotecan, Metformin, Trabectedin, Megace and Tamoxifen

    Hopefully one or more can be helpful to your mom. Wishing you both strength and peace. Kim 

    Thanks so much for sharing

    Thanks so much for sharing the list Kvdyson. You're an absolute champ! I'm going to look into each and everyone of them

  • pgdaughter
    pgdaughter Member Posts: 22
    #11
    Update

    Hi just to let those interested to know, how mum's doing and what she's on. 

    Mum's just had Cycles 1 and 2 of Carbo + Taxol + Avastin. She's also seeing a nutrionist who's prescribed vegetable broth and onion essence recipies. This combination seems to have alleviated her CA symptoms... her breathlessness has greatly reduced, and her cough also improved with less frequency and certainly less violent. We were told we would know the impact of the treatment on her cancers after Cycle 3. 

    During taxol we do icing for her to reduce the risk of neuropathy.

    We've done gene testing and informed as follows.

    • ERBB2 amplification
    • FBXW7 R465C
    • FGFR2 amplification
    • ARID1A Q588*
    • ERRFI1 R286fs*6
    • TP53 S96fs*20
    • CCNE1 amplification
    • MAP3K1 loss exons 2-20
    • MLL3 D2606fs*12
    • TERC amplification
    • TOP2A amplification

    Does anyone having anything similar in their genes? I would love to hear what you guys are doing and your experience with the treatments.

    To recap, mum's diagnosed with uterine serous cancer recurrence, but this time in the lungs and a little on the bone and adrenal glands.

    Positive vibes to all of you! 

     

     

  • Kvdyson
    Kvdyson Member Posts: 790 Member
    #12
    Hi PGdaughter, thanks for the

    Hi PGdaughter, thanks for the update and I'm glad to hear that your Mom is tolerating the treatments well with the help of a nutritionist.

    I compared the list of genes that you posted to the 45 genes that I had tested through Moffitt Cancer Center via Invitae and only one matched - TP53. My result was negative, meaning that no variant was found.

    There doesn't seem to be a lot of consistency regarding which genes are tested. The two tests that were done on my genes were referred to as the "Common Hereditary Cancers Panel for Breast, Gyn and GI" and the "Melanoma Panel" (because my first primary cancer was melanoma). Sorry that I couldn't offer more help. 

    Please give my warmest regards to your Mom and let her know that positive thoughts and well wishes are being sent her way! Kim

  • pgdaughter
    pgdaughter Member Posts: 22
    #13
    Kvdyson said:

    Hi PGdaughter, thanks for the

    Hi PGdaughter, thanks for the update and I'm glad to hear that your Mom is tolerating the treatments well with the help of a nutritionist.

    I compared the list of genes that you posted to the 45 genes that I had tested through Moffitt Cancer Center via Invitae and only one matched - TP53. My result was negative, meaning that no variant was found.

    There doesn't seem to be a lot of consistency regarding which genes are tested. The two tests that were done on my genes were referred to as the "Common Hereditary Cancers Panel for Breast, Gyn and GI" and the "Melanoma Panel" (because my first primary cancer was melanoma). Sorry that I couldn't offer more help. 

    Please give my warmest regards to your Mom and let her know that positive thoughts and well wishes are being sent her way! Kim

    Thanks

    Kind of you to reply Kim. Our best wishes to you too!

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