That didn't last long

DM_K
DM_K Member Posts: 51
in Uterine/Endometrial Cancer #1

I thought I would have longer than a couple of months to celebrate my last CT scan being clear and my CA 125 at 9.  Not long after getting the good news back in December, I started having abdominal swelling and discomfort.  I had a CT scan which showed fluid indicating my cancer is back, my CA 125 also went up to 356.  My gyn onc said that because my cancer came back within 6 months of treatment, it's platinum resistant.  Typcially with this resistence, per my gyn onc, lifespan is 12 to 24 months.  My gyn onc said he has one platinum resistant patient who is going on 4 years though.  I'm going forward with clinical trials if I qualify.  A tumor removed during surgery is being genetically tested to see if my cancer meets criteria.  If I don't qualify or if my cancer doesn't respond to clinical trials, then on to the next phase with several other chemo options.  

 

This bloating is the worst.  My abdomin is protuding and is hard to the touch.  It's very uncomfortable too.  Unfortunately I don't have enough fluid to aspirate so I just have to pray that the chemo will dry it up.

 

Would love to hear clinical trial experiences and/or if anyone else has or had this bloating issue?

 

I had a feeling I got off too easy the first round.

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Comments

  • Jairoldi
    Jairoldi Member Posts: 221 Member
    #2
    That was a brief reprieve

    Oh how distressing. I'm glad your doc is looking at options for you. Hopefully they'll have a swift plan for dealing with your bloating.

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,515 Member
    #3
    Dear DM_K, please don't

    Dear DM_K, please don't believe any 'timeline' the doctor said, no one knows how long any of us have.   You have seen the great resources here, so please push your doctor and know that you are in my prayers.

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,814 Member
    #4
    DMK, sorry to hear this news.

    DMK, sorry to hear this news. I don't have any clinical trial experience but wanted to let you know that you are in my thoughts and prayers. I hope the treatment kicks this latest round to the curb and gives you relief from the bloating.

    Love and Hugs,

    Cindi

  • SF73
    SF73 Member Posts: 317 Member
    edited March 2019 #5
    DMK I am sorry that you are

    DMK I am sorry that you are experiencing this. I do not have any clinical trial info but am so glad to hear that you will have the genomic profiling of your tumor. That may open up some more possibilities. I read about a ton of ovarian cancer patients who are platinum resistant and are still with us and enjoying life. Some have to be on a maintenance drug on a continuous basis but it is still manageable. Wonder if you would be a good candidate for Avastin? Did the CT Scan show any other areas of concern or just ascites? That may be a good sign, isnt it? 

  • Denise66
    Denise66 Member Posts: 81 Member
    #6
    Please don’t let anyone tell

    Please don’t let anyone tell you how much time you have. Your mind is strong and your will to live is stronger.  My thoughts and prayers are with you. 

  • barnyardgal
    barnyardgal Member Posts: 272 Member
    #7
    Just echoing everyone. You

    Just echoing everyone. You don't have a date stamp, and things are changing and improving so much in the cancer field that there so many more treatments than there used to be. 

  • Forherself
    Forherself Member Posts: 1,018 Member
    #8
    If you have a hard abdomen

    It seems like they could draw off some fluid.  It doesn't make sense to me as a nurse.  Was it hard when you went to see the doctor?   I would pursue this.  I think something could be done.

  • zsazsa1
    zsazsa1 Member Posts: 568 Member
    #9
    I am so sorry to hear this,

    I am so sorry to hear this, DMK.  From reading what everyone else has been through on this board, it is clear that there are things that can be done, even after recurrence.  I agree, it might be possible that they do paracentesis, which is where they draw off fluid via needle (not very painful, and gives immediate relief from pressure), while you're figuring out what can be done in terms of chemo.  Maybe a surgical consult is in order - they may feel differently from the oncologist.

    We are here with you.

  • DM_K
    DM_K Member Posts: 51
    #10
    Thank you Ladies

    Thank you Ladies for your kind words of support.  It's appreciated more than words can say. Smile

  • DM_K
    DM_K Member Posts: 51
    #11
    Forherself said:

    If you have a hard abdomen

    It seems like they could draw off some fluid.  It doesn't make sense to me as a nurse.  Was it hard when you went to see the doctor?   I would pursue this.  I think something could be done.

    When I had an US done a week

    When I had an US done a week ago the NP onc said I didn't have enough fluid to tap, apparently there has to be enough in order to do the procedure otherwise it's dangerous.  Yes my abdomen was hard both times I went in for the distention, it's very uncomfortable and is making me short of breath and unable to wear most of my clothes.  In addition, it might not be just fluid, there may also be a tumor(s) causing the distention.  The CT scan only showed a small amount of fluid but it also didn't show any definate outline of a tumor, per my gyn onc.  My gyn onc said that they don't like to tap if they don't have to, the fluid mostly consists of protein and us cancer patients need protein.  He also said that after tapping it usually fills back up pretty quickly and if the discomfort gets worse he will refer me to a pain clinic.  At this point just hoping the chemo will dry it up.

  • Lulu7582
    Lulu7582 Member Posts: 112 Member
    #12
    DM_K said:

    Thank you Ladies

    Thank you Ladies for your kind words of support.  It's appreciated more than words can say. Smile

    Hi DMK

    All the best with the clinical trials. As the others have said remember we are a statistic of one and each of us are unique!! I don't have any fluid in my abdo but do have the bloating and feel like I am 5 months pregnant....doc thinks it could be the side effects from the everolimus. 

    As far as the clinical trials I will be seeing my doc next week because she says I am eligible for one with targeted therapy and Taxol again. I have mixed emotions about having Taxol again and don't look forward to losing my hair all over again. But if it stops my cancer and gives me more time then here we go again. They did do genomic testing so I will find out more about this trial. 

    So DMK let us know what they decide and keep us posted. xo

  • DM_K
    DM_K Member Posts: 51
    #13
    SF73 said:

    DMK I am sorry that you are

    DMK I am sorry that you are experiencing this. I do not have any clinical trial info but am so glad to hear that you will have the genomic profiling of your tumor. That may open up some more possibilities. I read about a ton of ovarian cancer patients who are platinum resistant and are still with us and enjoying life. Some have to be on a maintenance drug on a continuous basis but it is still manageable. Wonder if you would be a good candidate for Avastin? Did the CT Scan show any other areas of concern or just ascites? That may be a good sign, isnt it? 

    My gyn onc did mention

    My gyn onc did mention Avastin as a possible chemo drug.  I think this is the chemo he said is very good at drying up fluid in the abdomen, or maybe it was adriamycin that drys up fluid.  I do know for sure that Avastin was mentioned.  The CT showed only a small amount of fluid but my gyn onc said that the fluid and distention could also be related to new tumor growth.  It's so much to absorb, my head is spinning.

  • LisaPizza
    LisaPizza Member Posts: 358 Member
    #14
    I hope you get some useful

    I hope you get some useful news about the trials or tumor testing. Maybe the pain doc will have better ideas about what's causing such discomfort and more options to relieve it. I hope so!

  • DM_K
    DM_K Member Posts: 51
    #15
    Lulu7582 said:

    Hi DMK

    All the best with the clinical trials. As the others have said remember we are a statistic of one and each of us are unique!! I don't have any fluid in my abdo but do have the bloating and feel like I am 5 months pregnant....doc thinks it could be the side effects from the everolimus. 

    As far as the clinical trials I will be seeing my doc next week because she says I am eligible for one with targeted therapy and Taxol again. I have mixed emotions about having Taxol again and don't look forward to losing my hair all over again. But if it stops my cancer and gives me more time then here we go again. They did do genomic testing so I will find out more about this trial. 

    So DMK let us know what they decide and keep us posted. xo

    Thank you Lulu.  I will keep

    Thank you Lulu.  I will keep everyone posted and please you do the same.  I wouldn't be happy losing my hair all over again either but like you said if it gives more time, go for it.  We never know what will be the final butt kicker of this disease.

  • DM_K
    DM_K Member Posts: 51
    #16
    zsazsa1 said:

    I am so sorry to hear this,

    I am so sorry to hear this, DMK.  From reading what everyone else has been through on this board, it is clear that there are things that can be done, even after recurrence.  I agree, it might be possible that they do paracentesis, which is where they draw off fluid via needle (not very painful, and gives immediate relief from pressure), while you're figuring out what can be done in terms of chemo.  Maybe a surgical consult is in order - they may feel differently from the oncologist.

    We are here with you.

    I wanted my abdomen tapped so

    I wanted my abdomen tapped so bad to get relief when I was there a week ago and cried when they said there wasn't enough.  I'm just learning to live with it right now until I start chemo again.  I asked about surgery after I was told this distention could also be tumor related.  My gyn onc said that surgery isn't an option right now, chemo therapy is the next step. 

  • DM_K
    DM_K Member Posts: 51
    #17
    LisaPizza said:

    I hope you get some useful

    I hope you get some useful news about the trials or tumor testing. Maybe the pain doc will have better ideas about what's causing such discomfort and more options to relieve it. I hope so!

    Thank you Lisa, I will keep

    Thank you Lisa, I will keep everyone posted.  My next gyn onc appointment is 3/21

  • DM_K
    DM_K Member Posts: 51
    #18
    evolo58 said:

    It's so irritating

    When doctors predict life expectancies. They should never do that.

    Please remember one main thing: Most women with UPSC are considerably older than you are. Average age, according to my gyno-onco, is in the 80s. So if you get a progression/recurrence when you're in your 80s, and particularly if you have other co-morbidities, yes, it could be a huge problem. Even if you are in your 80s, though, it does not mean you're doomed.

    Looking at the bios of ladies here, many have had recurrences/progressions (often several) and lasted considerably longer than two years. Many are still around, thanks. 

    I agree with ladies here: Don't let ANY doctor tell you how long you have. I am really questioning his bedside manner if he volunteered the information.

    Let's hope the docs can find the right means to kick this beast back to the curb. 


    Thank you.  I told my gyn onc

    Thank you.  I told my gyn onc to be up front with me about everything, even how much time I have.  From my understanding, being platinum resistant is what brought him to "typically" 12 to 24 months.  He even went as far to say if the clinical trials don't work my time may even be cut shorter.  My disease was very extensive at the time of my surgery.  My CA 125 was only 154 then and now it has more than doubled.  I hope the genetic testing of my tumor will help get the right chemo combo to kick its rear.

  • evolo58
    evolo58 Member Posts: 293 Member
    #19
    It's so irritating

    When doctors predict life expectancies. They should never do that.

    Please remember one main thing: Most women with UPSC are considerably older than you are. Average age, according to my gyno-onco, is in the 80s. So if you get a progression/recurrence when you're in your 80s, and particularly if you have other co-morbidities, yes, it could be a huge problem. Even if you are in your 80s, though, it does not mean you're doomed.

    Looking at the bios of ladies here, many have had recurrences/progressions (often several) and lasted considerably longer than two years. Many are still around, thanks. 

    I agree with ladies here: Don't let ANY doctor tell you how long you have. I am really questioning his bedside manner if he volunteered the information.

    Let's hope the docs can find the right means to kick this beast back to the curb. 


  • Kaleena
    Kaleena Member Posts: 2,088 Member
    #20
    Sending you hugs.   I agree

    Sending you hugs.   I agree with the others.   Don’t let anyone give you a timeline.  As one of the posters used to say we are a statistic of one.  (((Hugs)))

  • SF73
    SF73 Member Posts: 317 Member
    #21
    DM_K said:

    My gyn onc did mention

    My gyn onc did mention Avastin as a possible chemo drug.  I think this is the chemo he said is very good at drying up fluid in the abdomen, or maybe it was adriamycin that drys up fluid.  I do know for sure that Avastin was mentioned.  The CT showed only a small amount of fluid but my gyn onc said that the fluid and distention could also be related to new tumor growth.  It's so much to absorb, my head is spinning.

    Avastin is not a chemo drug

    Avastin is not a chemo drug actually. It is an angiogenesis inhibitor. Angiogenesis is formation of new blood vessels. Solid tumors need blood supply. That's why doctors would like to prevent our bodies ability to build new blood vessels. If the solid tumor cannot build any new vessels they do not get the blood they need for growth. So it prevents metastasis. 

    I think it is good news that there is no growth in any of the vital organs. Wishing you all the best!

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