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And so the journey continues; got my scan results

AWK
AWK Member Posts: 364

Hi ladies!  Well, the news isn't great - I continue to progress now through my Avastin treatments.  Two tumors have doubled in size, the one by my heart grew and the other two are stable.  The good news is no new mets were seen and no direct organ involvement.  My doctors are having me meet this Tuesday with a principal investigator/clinician for the NCI/NIH who is based at USC this Tuesday. The idea is to give me access to all kinds of treatments, not just those specifically for uterine or ovarian cancer.  truly looking for matches to my genes.  It is really fascinating.  And no matter what, other women will benefit from my treatments which makes me feel pretty good about it all.  

You should see the stacks of paper around my tests, visits and opinions I have gathered over the last two years.  Plus five discs of scans etc.  I feel pretty well and mentally am in good shape for this next chapter.  We are hopeful that some options will be identified for me.  In the meantime, working and riding horses, tooling around the house and spending time with family and friends.  Living fully.  

Sending all of you healing vibes and wishes that you can stay strong and thrive!  Anne

Comments

  • Kaleena
    Kaleena Member Posts: 2,059
    Thinking of you

    Anne

    Thanks for sharing your news.  Sorry the tumors have grown but at least there are no new ones.   Love you are living fully.  Sending you positive vibes and hugs!!!

    Kathy

  • AWK
    AWK Member Posts: 364
    Kaleena said:

    Thinking of you

    Anne

    Thanks for sharing your news.  Sorry the tumors have grown but at least there are no new ones.   Love you are living fully.  Sending you positive vibes and hugs!!!

    Kathy

    Thanks Kathy!

    it means so much!

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 2,928 **
    Anne, I remember asking a

    Anne, I remember asking a group of gyn onc's if women with UPSC should be looking at how Ovarian cancer is treated?  They are both very aggressive, below the belt cancers, and I think it made them pause. 

    I hope what they cook up works for you, and I hope it helps many.  There is something fascinating and scary to it all, but there are smart people out there who truly care.  For your willingness to try it all I would like to thank you.  I especially love to hear you are "living fully". 

     

  • Kathy G.
    Kathy G. Member Posts: 235 **

    Anne, I remember asking a

    Anne, I remember asking a group of gyn onc's if women with UPSC should be looking at how Ovarian cancer is treated?  They are both very aggressive, below the belt cancers, and I think it made them pause. 

    I hope what they cook up works for you, and I hope it helps many.  There is something fascinating and scary to it all, but there are smart people out there who truly care.  For your willingness to try it all I would like to thank you.  I especially love to hear you are "living fully". 

     

    Anne,
    Best of luck & my

    Anne,

    Best of luck & my prayers as you continue your fight.

    I have nothing but respect for you ladies who continue to do battle.Laughing

    Kathy

  • Abbycat2
    Abbycat2 Member Posts: 644

    Anne, I remember asking a

    Anne, I remember asking a group of gyn onc's if women with UPSC should be looking at how Ovarian cancer is treated?  They are both very aggressive, below the belt cancers, and I think it made them pause. 

    I hope what they cook up works for you, and I hope it helps many.  There is something fascinating and scary to it all, but there are smart people out there who truly care.  For your willingness to try it all I would like to thank you.  I especially love to hear you are "living fully". 

     

    Anne, I remain in your corner, my friend!

    Oh,darn, I was hoping that your tumors were shrinking but am hopeful that your meeting tomorrow will be a turn pager and new effective treatment will be offered. Do keep your positive outlook and continue to live a fruitful life. Ride your horses like there is no tomorrow- with fresh abandon! I love horseback riding - nothing beats the exhilarating thrill of a horse stretching it's legs and pounding the ground  in a gallop! 

     

    Wishing you the very best!

    Hugs, Cathy

     

  • Ro10
    Ro10 Member Posts: 1,561
    Anne

    So sorry to hear the tumors have progressed.  Good luck with your appointment on Tuesday.  I hope they give you a new plan that can slow the growth for you.  In peace and caring.   Continue to ride those horses and live fully.  Mayyoucontinue to find joy in each day.  You remain in my prayers.

  • AWK
    AWK Member Posts: 364

    Anne, I remember asking a

    Anne, I remember asking a group of gyn onc's if women with UPSC should be looking at how Ovarian cancer is treated?  They are both very aggressive, below the belt cancers, and I think it made them pause. 

    I hope what they cook up works for you, and I hope it helps many.  There is something fascinating and scary to it all, but there are smart people out there who truly care.  For your willingness to try it all I would like to thank you.  I especially love to hear you are "living fully". 

     

    Thanks No Time And Cathy

    I feel great and my doctors have always subscribed to the theory of cell type first, location second.  I am lucky to have forward thinkers in my corner and very fortunate to have access to them.  I am always mindful of that and truly believe others will benefit from my journey.  

    I am lucky for so many reasons and one is the ability to ride and be cancer free for a few hours with Cisco.  He is a rescue horse and he keeps me living in the moment.  It gives me peace.  I hope everyone can find that, like Ro and her garden.  

    I am so lucky to have all of you pushing me and boosting me when I need it.  Hugs!

  • flyerette65
    flyerette65 Member Posts: 65
    Ro10 said:

    Anne

    So sorry to hear the tumors have progressed.  Good luck with your appointment on Tuesday.  I hope they give you a new plan that can slow the growth for you.  In peace and caring.   Continue to ride those horses and live fully.  Mayyoucontinue to find joy in each day.  You remain in my prayers.

    Anne

    Sorry to hear that your tumors are progressing but I have to tell you I think you are one amazing woman! Living life fully is what we all need to do, especially those of us with UPSC. 

  • Abbycat2
    Abbycat2 Member Posts: 644

    Anne

    Sorry to hear that your tumors are progressing but I have to tell you I think you are one amazing woman! Living life fully is what we all need to do, especially those of us with UPSC. 

    You seem to be blessed with a team of great doctors, Anne

    You seem to be blessed with a team of great doctors, Anne.  I am looking forward to hearing about your meeting yesterday with the clinician from NCI/NIH.  It makes a lot of sense to me that our cancer should be analyzed to determine what drugs are most effective in fighting it.  Praying that you get good news regardng effective treatment.

    Hugs to you,

    Cathy     

  • ConnieSW
    ConnieSW Member Posts: 1,578 **
    Abbycat2 said:

    You seem to be blessed with a team of great doctors, Anne

    You seem to be blessed with a team of great doctors, Anne.  I am looking forward to hearing about your meeting yesterday with the clinician from NCI/NIH.  It makes a lot of sense to me that our cancer should be analyzed to determine what drugs are most effective in fighting it.  Praying that you get good news regardng effective treatment.

    Hugs to you,

    Cathy     

    Anne

    You may not be able to see me but I'm with you on your team.  Strength in numbers

  • Abbycat2
    Abbycat2 Member Posts: 644
    ConnieSW said:

    Anne

    You may not be able to see me but I'm with you on your team.  Strength in numbers

    Ditto , Connie!

     

    Ditto to that, Connie!!

  • AWK
    AWK Member Posts: 364
    Abbycat2 said:

    Ditto , Connie!

     

    Ditto to that, Connie!!

    Thanks ladies! Update too

    I met with the doctor at USC Norris on Tuesday and it was so interesting!  He spent an hour and a half with us going through my genome test results and taking about the 21 mutations I have and six genes I carry.  Their recommendation is to alter one of the pathways in my cellular structure called notch III with the idea of disrupting the reproduction of the cancer cells.  There is a clinical trial targeting this pathway called BMS-986114 that I am a candidate for.  They recommend this one because the presence of this Notch III  is the one that is most consistent in my tissues.  Otherwise I have another defect called RAS mutation that there is a clinical trial for as a backup.  Apparently my combination of mutations combined with UPSC make me the only patient they have seen like this in their database, and one of a handful nationwide.  

    I feel good about this approach, my husband and I decided last night to move forward with the trial.  Speaking with this doctor was a continuation of my conversations with my oncologist which really drove home the quality of care I have had so far.  In terms of USC's opinion, they concurred with my diagnosis and treatments to date - mirroring the opinion of City of Hope.  He noted that he also concurs with the original staging of IIIC based on the original surgery and pathology but agrees with the restaged IV although they would indicate IVb not IVa.  Either way the treatments wouldn't have changed.  

    Feeling good, visited Cisco the horse last night and we are both taking today off from work to be tourists.  mentally I am in good shape and one of the things I like is that my experience will help others.  Thanks so much for the prayers and support ladies.  It is a huge help to me during these long days.  I am happy I have all of you to turn to!  Staying string and thriving and wishing the same for all of you!  Anne

  • Ro10
    Ro10 Member Posts: 1,561
    AWK said:

    Thanks ladies! Update too

    I met with the doctor at USC Norris on Tuesday and it was so interesting!  He spent an hour and a half with us going through my genome test results and taking about the 21 mutations I have and six genes I carry.  Their recommendation is to alter one of the pathways in my cellular structure called notch III with the idea of disrupting the reproduction of the cancer cells.  There is a clinical trial targeting this pathway called BMS-986114 that I am a candidate for.  They recommend this one because the presence of this Notch III  is the one that is most consistent in my tissues.  Otherwise I have another defect called RAS mutation that there is a clinical trial for as a backup.  Apparently my combination of mutations combined with UPSC make me the only patient they have seen like this in their database, and one of a handful nationwide.  

    I feel good about this approach, my husband and I decided last night to move forward with the trial.  Speaking with this doctor was a continuation of my conversations with my oncologist which really drove home the quality of care I have had so far.  In terms of USC's opinion, they concurred with my diagnosis and treatments to date - mirroring the opinion of City of Hope.  He noted that he also concurs with the original staging of IIIC based on the original surgery and pathology but agrees with the restaged IV although they would indicate IVb not IVa.  Either way the treatments wouldn't have changed.  

    Feeling good, visited Cisco the horse last night and we are both taking today off from work to be tourists.  mentally I am in good shape and one of the things I like is that my experience will help others.  Thanks so much for the prayers and support ladies.  It is a huge help to me during these long days.  I am happy I have all of you to turn to!  Staying string and thriving and wishing the same for all of you!  Anne

    Anne

    Glad you got a plan that you are comfortable with.  It is so important to have the support of your husband, too.  I pray that the clinical trial will slow the growth.  It Is amazing to me all the advances they have made to test our genetics and to know how to alter their pathways.  I admire your willigness to participate I order to help others in the future.  I continue to pray for strength for you as you continue your journey.  I hope you and Cisco had a wonderfully as a tourist.  In peace and caring.