Mom given 6-12 months

Anita1216
Anita1216 Member Posts: 58
Its PPC, and it is not responding to chemo. As a matter of fact, her gyn/onc said it has spread and there is a mass sitting on her liver. We are devastated and shocked. She is not a surgical candidate and clinical trials will not take her because of her deconditioned state.

She is stoic and taking the news far better than any of her 5 children. How do we handle all of this emotion and grief? My heart feels splintered and it's all I can do not to bawl like a baby every second of the day.

He told us that what we need to think about is quality of life vs quantity, but its a damn hard pill to swallow.

She has told us all she will be fine and that this is the natural order of things, but she is only 66!

Im toughing it up the best I can, but my lip is quivering as i type this.
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Comments

  • Mum2bellaandwilliam
    Mum2bellaandwilliam Member Posts: 412
    It's so pants, I am in the
    It's so pants, I am in the same boat with my mum, 12 months Left , PPC.
    When was you mum diagnosed?We found out last may, I have kind of comes to terms with it now, I have read so much on the net, and shed so many tears, I think I just can't of carried on as I was , and I need to enjoy every opportunity I can to spend time with my mum, please do the same with your mum.
    It's just not fair, my heart goes out to you and your mum, (( hugs)) Liz x
  • Lisa13Q
    Lisa13Q Member Posts: 677
    Dear Anita
    I am soooo sorry that you are deling with this ghastly disease...it really is tough and it doesn't sound like you've had a lot of time to digest your Mom's diagnosis, much less this news. That being said, NO ONE HAS AN EXPIRATION DATE and no doctor can tell you that....I don't know where you are being treated but there are so many approaches to treating this disease these days and I would get a second opinion....doesn't mean the cancer can be cured or that your Mom isn't gravely ill, but....perhaps a gentler and more caring approach might be in order...I am soo sorry for the news....I truly do get it....Mu mom has been fighting this disease for almost 2 years and is extremely ill....we have the opposite situation, her doctor won't tell her how sick she is and she needs hospice right now....I think s/he is doing her a huge disservice...no matter how this disease progresses, it is really emotionally challenging, but please know that you can deal with it...and so can your Mom....my lips quiver sometimes and I have made sure to say everything to my mother I have needed to.....we have made wonderful memories.....do the same.....again, NO DOCTOR KNOWS>>>>>
  • Anita1216
    Anita1216 Member Posts: 58
    Lisa13Q said:

    Dear Anita
    I am soooo sorry that you are deling with this ghastly disease...it really is tough and it doesn't sound like you've had a lot of time to digest your Mom's diagnosis, much less this news. That being said, NO ONE HAS AN EXPIRATION DATE and no doctor can tell you that....I don't know where you are being treated but there are so many approaches to treating this disease these days and I would get a second opinion....doesn't mean the cancer can be cured or that your Mom isn't gravely ill, but....perhaps a gentler and more caring approach might be in order...I am soo sorry for the news....I truly do get it....Mu mom has been fighting this disease for almost 2 years and is extremely ill....we have the opposite situation, her doctor won't tell her how sick she is and she needs hospice right now....I think s/he is doing her a huge disservice...no matter how this disease progresses, it is really emotionally challenging, but please know that you can deal with it...and so can your Mom....my lips quiver sometimes and I have made sure to say everything to my mother I have needed to.....we have made wonderful memories.....do the same.....again, NO DOCTOR KNOWS>>>>>

    We only found out in
    We only found out in February!!! So in the last 2 months we have had to deal with so much!!
    We are seeking a second opinion only because mom wants to be sure and I feel to ease our minds as well.

    I dont want her to be sick and unable to spend quality time with family and friends. She feels that if further treatment offers no hope, then it is best to "roll" with it and do what she wants with the time left to her. She is an amazing woman and has been strong her entire life.

    I sat with her last night and we had a long talk. I asked if she was afraid and she told me she was not, but she was afraid for us. I am blessed to have a mother so concerned and always looking out for her children. She asked me if she would be in a lot of pain and unable to be anything other than honest...told her most likely. She smiled and said "thank god for drugs."

    She truly is AMAZING!

    We are going to run this race with her and likely have a party to celebrate her life, screw waiting for death..do it NOW I say!!!

    Its just tough and the realization of what is happening is scary to say the least.
  • Barbara53
    Barbara53 Member Posts: 652
    Anita1216 said:

    We only found out in
    We only found out in February!!! So in the last 2 months we have had to deal with so much!!
    We are seeking a second opinion only because mom wants to be sure and I feel to ease our minds as well.

    I dont want her to be sick and unable to spend quality time with family and friends. She feels that if further treatment offers no hope, then it is best to "roll" with it and do what she wants with the time left to her. She is an amazing woman and has been strong her entire life.

    I sat with her last night and we had a long talk. I asked if she was afraid and she told me she was not, but she was afraid for us. I am blessed to have a mother so concerned and always looking out for her children. She asked me if she would be in a lot of pain and unable to be anything other than honest...told her most likely. She smiled and said "thank god for drugs."

    She truly is AMAZING!

    We are going to run this race with her and likely have a party to celebrate her life, screw waiting for death..do it NOW I say!!!

    Its just tough and the realization of what is happening is scary to say the least.

    just cry
    Like Lisa, I've been helping my mother battle this disease for two years. I remember the shock of those first months, and how much I cried! It's natural, so just let it out. We humans seem to be grieving animals.

    Your mother need not anticipate uncontrolled pain. Morphine is truly a wonder drug, amazing with cancer pain with few side effects. My mom's palliative care doc started using it for her several months ago, and it's been great.

    Also please visit us in the caregiver forum (scroll down to other discussion groups); in the wee hours you can always find support in caregiver chat. It's a fine group of extremely wise people.
  • kellyh33
    kellyh33 Member Posts: 287
    So sorry
    I wish I had some words of wisdom and encouragement but I don't. I am going through the same thing with my mom, she is 67 with 5 children. It is very hard but all we can do is support our moms the best way we know how.
    Sometimes I think it would be best if we did not know their timeline. It is an educated guess at best and with all the research who knows what we could learn about the disease in the next year.
    Try not to lose hope, I am hanging onto mine by a thread.
    Hugs,
    Kelly
  • survivingovca
    survivingovca Member Posts: 23
    Anita1216 said:

    We only found out in
    We only found out in February!!! So in the last 2 months we have had to deal with so much!!
    We are seeking a second opinion only because mom wants to be sure and I feel to ease our minds as well.

    I dont want her to be sick and unable to spend quality time with family and friends. She feels that if further treatment offers no hope, then it is best to "roll" with it and do what she wants with the time left to her. She is an amazing woman and has been strong her entire life.

    I sat with her last night and we had a long talk. I asked if she was afraid and she told me she was not, but she was afraid for us. I am blessed to have a mother so concerned and always looking out for her children. She asked me if she would be in a lot of pain and unable to be anything other than honest...told her most likely. She smiled and said "thank god for drugs."

    She truly is AMAZING!

    We are going to run this race with her and likely have a party to celebrate her life, screw waiting for death..do it NOW I say!!!

    Its just tough and the realization of what is happening is scary to say the least.

    Second opinions
    I am SO GLAD you are seeking a second opinion! My first two doctors pretty much gave me no hope for a future, and said I would be on chemo the rest of my (very short) life. Well, they were wrong. I have had no evidence of disease now for nearly 1 1/2 years! There really is hope.

    Enjoy your time with your mom. Whether she has six months, six years, or sixty more, you will not regret spending quality time with her. Don't let the fear of the future overwhelm you (easier said than done, I know).
  • Mum2bellaandwilliam
    Mum2bellaandwilliam Member Posts: 412
    kellyh33 said:

    So sorry
    I wish I had some words of wisdom and encouragement but I don't. I am going through the same thing with my mom, she is 67 with 5 children. It is very hard but all we can do is support our moms the best way we know how.
    Sometimes I think it would be best if we did not know their timeline. It is an educated guess at best and with all the research who knows what we could learn about the disease in the next year.
    Try not to lose hope, I am hanging onto mine by a thread.
    Hugs,
    Kelly

    hi again if you only found
    hi again if you only found out in feb how can you doctor say another chemo won't work? surely they dont know until they try it?
    I think you are very wise to seek a second opinion , I would not be happy with what you have been told.
    What drugs has she tried?
    I hope you find a doc that will give your mum ago on another treatment.
    I know those first few months when we found were soooooo awful, I have found peace with it now, but it took me a long time to do that.I am so sorry this has all happened so quickly.praying for you and your mum .
    Liz xxx
  • Mum2bellaandwilliam
    Mum2bellaandwilliam Member Posts: 412
    kellyh33 said:

    So sorry
    I wish I had some words of wisdom and encouragement but I don't. I am going through the same thing with my mom, she is 67 with 5 children. It is very hard but all we can do is support our moms the best way we know how.
    Sometimes I think it would be best if we did not know their timeline. It is an educated guess at best and with all the research who knows what we could learn about the disease in the next year.
    Try not to lose hope, I am hanging onto mine by a thread.
    Hugs,
    Kelly

    hi again if you only found
    hi again if you only found out in feb how can you doctor say another chemo won't work? surely they don't know until they try it?
    I think you are very wise to seek a second opinion , I would not be happy with what you have been told.
    What drugs has she tried?
    I hope you find a doc that will give your mum ago on another treatment.
    I know those first few months when we found out were soooooo awful, I have found peace with it now, but it took me a long time to do that.I am so sorry this has all happened so quickly.praying for you and your mum .
    Liz xxx
  • Mum2bellaandwilliam
    Mum2bellaandwilliam Member Posts: 412
    kellyh33 said:

    So sorry
    I wish I had some words of wisdom and encouragement but I don't. I am going through the same thing with my mom, she is 67 with 5 children. It is very hard but all we can do is support our moms the best way we know how.
    Sometimes I think it would be best if we did not know their timeline. It is an educated guess at best and with all the research who knows what we could learn about the disease in the next year.
    Try not to lose hope, I am hanging onto mine by a thread.
    Hugs,
    Kelly

    hi again if you only found
    hi again if you only found out in feb how can you doctor say another chemo won't work? surely they don't know until they try it?
    I think you are very wise to seek a second opinion , I would not be happy with what you have been told.
    What drugs has she tried?
    I hope you find a doc that will give your mum ago on another treatment.
    I know those first few months when we found out were soooooo awful, I have found peace with it now, but it took me a long time to do that.I am so sorry this has all happened so quickly.praying for you and your mum .
    Liz xxx
  • Mum2bellaandwilliam
    Mum2bellaandwilliam Member Posts: 412
    kellyh33 said:

    So sorry
    I wish I had some words of wisdom and encouragement but I don't. I am going through the same thing with my mom, she is 67 with 5 children. It is very hard but all we can do is support our moms the best way we know how.
    Sometimes I think it would be best if we did not know their timeline. It is an educated guess at best and with all the research who knows what we could learn about the disease in the next year.
    Try not to lose hope, I am hanging onto mine by a thread.
    Hugs,
    Kelly

    hi again if you only found
    hi again if you only found out in feb how can you doctor say another chemo won't work? surely they don't know until they try it?
    I think you are very wise to seek a second opinion , I would not be happy with what you have been told.
    What drugs has she tried?
    I hope you find a doc that will give your mum ago on another treatment.
    I know those first few months when we found out were soooooo awful, I have found peace with it now, but it took me a long time to do that.I am so sorry this has all happened so quickly.praying for you and your mum .
    Liz xxx
  • Anita1216
    Anita1216 Member Posts: 58

    hi again if you only found
    hi again if you only found out in feb how can you doctor say another chemo won't work? surely they don't know until they try it?
    I think you are very wise to seek a second opinion , I would not be happy with what you have been told.
    What drugs has she tried?
    I hope you find a doc that will give your mum ago on another treatment.
    I know those first few months when we found out were soooooo awful, I have found peace with it now, but it took me a long time to do that.I am so sorry this has all happened so quickly.praying for you and your mum .
    Liz xxx

    I guess he does not feel she
    I guess he does not feel she is strong enough to handle chemo. Her condition is poor, but I feel it may simply be poor nutrition. I am likely looking for hope desperately. I believe she was on the standard drugs given for OVCA-carboplatin/? I am not sure.

    My brother is getting a second look as a favor from a doc he works with and from there it will go to the Cleveland Clinic. I know looking at her CT results, the cancer is not in her organs, it is the increase in ascities (sp) and new spots on her abdominal wall that has him calling the chemo failed. I just know that if we don't have a second opinion there will be major regret all the way around, for all 5 of us.

    All of you have been kind and thoughtful in your replies and my broken heart thanks you!!!!
  • Anita1216
    Anita1216 Member Posts: 58
    Anita1216 said:

    I guess he does not feel she
    I guess he does not feel she is strong enough to handle chemo. Her condition is poor, but I feel it may simply be poor nutrition. I am likely looking for hope desperately. I believe she was on the standard drugs given for OVCA-carboplatin/? I am not sure.

    My brother is getting a second look as a favor from a doc he works with and from there it will go to the Cleveland Clinic. I know looking at her CT results, the cancer is not in her organs, it is the increase in ascities (sp) and new spots on her abdominal wall that has him calling the chemo failed. I just know that if we don't have a second opinion there will be major regret all the way around, for all 5 of us.

    All of you have been kind and thoughtful in your replies and my broken heart thanks you!!!!

    I meant to also add that her
    I meant to also add that her CA125 from April 21st is 9.1...within a normal range I believe.

    This is all very very confusing and terribly scary.
  • Mum2bellaandwilliam
    Mum2bellaandwilliam Member Posts: 412
    Anita1216 said:

    I guess he does not feel she
    I guess he does not feel she is strong enough to handle chemo. Her condition is poor, but I feel it may simply be poor nutrition. I am likely looking for hope desperately. I believe she was on the standard drugs given for OVCA-carboplatin/? I am not sure.

    My brother is getting a second look as a favor from a doc he works with and from there it will go to the Cleveland Clinic. I know looking at her CT results, the cancer is not in her organs, it is the increase in ascities (sp) and new spots on her abdominal wall that has him calling the chemo failed. I just know that if we don't have a second opinion there will be major regret all the way around, for all 5 of us.

    All of you have been kind and thoughtful in your replies and my broken heart thanks you!!!!

    Get that second opinion, I
    Get that second opinion, I agree If the acites is there. It is Not working. Did the acites go away from when she was first diagnosed? It took my mum a 2 chemos before it went and then she was almost about to have her third before it went.
    My mum finished her first line treatment, we thought great she is in remission, however on her baseline ct scan , it showed the cancer had returned.about 2 weeks later the ascites was back , she has now started doxil and the acites has gone again, she has her Third lot thursday, it took two infusions for it to go.the oncologist told us it normally works for 3/4 infusions with grade of ppc mum has, praying he is wrong and that we get a few more goes!,
    There must be more they can try, maybe doxil?
    Please keep is updated, I am sure there must be more they can do and try for her .xxx
    Also it may be worth asking about nutrition supplements, my mum wasn't eating and felt awful , she ended up in hospitals,she has a slight infection , they sorted her out and she now has steroids , she is so much better, it is almost like having my old mum back .
    It's all worth an ask xx
  • Lisa13Q
    Lisa13Q Member Posts: 677
    Anita1216 said:

    I guess he does not feel she
    I guess he does not feel she is strong enough to handle chemo. Her condition is poor, but I feel it may simply be poor nutrition. I am likely looking for hope desperately. I believe she was on the standard drugs given for OVCA-carboplatin/? I am not sure.

    My brother is getting a second look as a favor from a doc he works with and from there it will go to the Cleveland Clinic. I know looking at her CT results, the cancer is not in her organs, it is the increase in ascities (sp) and new spots on her abdominal wall that has him calling the chemo failed. I just know that if we don't have a second opinion there will be major regret all the way around, for all 5 of us.

    All of you have been kind and thoughtful in your replies and my broken heart thanks you!!!!

    PLEASE GET SECOND OPINION
    OK....IF SHE DOES NOT HAVE CANCER ON ANY OF HER MAJOR ORGANS....I HAVE NO IDEA HOW THE DOCTOR SAID WHAT HE SAID...VIRTUALLY EVERYONE WITH OVCA HAS SOME SPOTS ON OTHER ORGANS AND THAT CAN BE MANAGED FOR A LONG LONG TIME...SO NO SPOTS???? FIND AN EXCELLENT GYNECOLOGICAL/ONCOLOGIST AND I THINK YOU WILL GET A DIFFERENT VIEW.....MAYO ROCHESTER HAS AN EXCELLENT DEPARTMENT....THERE ARE SO MANY CHEMOS I DON'T KNOW HOW THE DOC IS SAYING WHAT HE IS....AT THE SAME TIME, SPEND TIME AND ENJOY AS WELL....YOUR MOTHER SOUNDS LIKE SHE IS HANDLING THIS WELL....MINE IS SO ANGRY THESE DAYS....AND SAD....ENJOY HER....
  • Anita1216
    Anita1216 Member Posts: 58
    Lisa13Q said:

    PLEASE GET SECOND OPINION
    OK....IF SHE DOES NOT HAVE CANCER ON ANY OF HER MAJOR ORGANS....I HAVE NO IDEA HOW THE DOCTOR SAID WHAT HE SAID...VIRTUALLY EVERYONE WITH OVCA HAS SOME SPOTS ON OTHER ORGANS AND THAT CAN BE MANAGED FOR A LONG LONG TIME...SO NO SPOTS???? FIND AN EXCELLENT GYNECOLOGICAL/ONCOLOGIST AND I THINK YOU WILL GET A DIFFERENT VIEW.....MAYO ROCHESTER HAS AN EXCELLENT DEPARTMENT....THERE ARE SO MANY CHEMOS I DON'T KNOW HOW THE DOC IS SAYING WHAT HE IS....AT THE SAME TIME, SPEND TIME AND ENJOY AS WELL....YOUR MOTHER SOUNDS LIKE SHE IS HANDLING THIS WELL....MINE IS SO ANGRY THESE DAYS....AND SAD....ENJOY HER....

    Her gyn/onc feels that
    Her gyn/onc feels that further chemo would be even more harsh and it might kill her. He is trying to look at quality of life vs quantity. At this point I feel we OWE her a second opinion and another go with a second line chemo. The ascities has never gone away, but the past two drainings have only been 8 liters total. Im not sure if that is alot or not. She is scheduled for another tap tomorrow afternoon, so we will see what has built up over the past month.

    He said that after 2 treatments we should have seen a response if there was going to be one.*sigh*

    Her bloodwork shows many of her numbers are critically low-albumin and protein being the ones of main concern. She had two units of blood on Tuesday, that was low as well.

    We are all willing to do what it takes if there is hope out there. If nothing else we want the best pallative care available for her.

    You ladies are awesome!
  • eward
    eward Member Posts: 210
    Anita1216 said:

    Her gyn/onc feels that
    Her gyn/onc feels that further chemo would be even more harsh and it might kill her. He is trying to look at quality of life vs quantity. At this point I feel we OWE her a second opinion and another go with a second line chemo. The ascities has never gone away, but the past two drainings have only been 8 liters total. Im not sure if that is alot or not. She is scheduled for another tap tomorrow afternoon, so we will see what has built up over the past month.

    He said that after 2 treatments we should have seen a response if there was going to be one.*sigh*

    Her bloodwork shows many of her numbers are critically low-albumin and protein being the ones of main concern. She had two units of blood on Tuesday, that was low as well.

    We are all willing to do what it takes if there is hope out there. If nothing else we want the best pallative care available for her.

    You ladies are awesome!

    ppc
    This is such an unfair disease. My mom was diagnosed with stage 4 ppc 2 years ago(quite suddenly at age 62, almost 63) and has been in chemo non-stop since diagnosis. The drs. can tell a lot from the bloodwork, but yes a 2nd opinion is worth it. My mom was told at first that she was not a candidate for surgery and in her 2nd opinion she was told she COULD have surgery. There were no guarantees, but the dr was able to successfully complete surgery with 95% of the cancer removed. She had what is called seeding in her abdomen after surgery. This means that there were little grain sized cancer cells visible in her abdomen. She has done better than what the dr predicted. So for the past 2 years, the chemo has kept those cancer cells pretty much stable. She is not symptom free, but has a pretty good quality of life and is still here! You just never know what will happen. Your mom may be able to tolerate more than anyone thinks she can. I wish you and your mom the best.
  • eward
    eward Member Posts: 210
    Anita1216 said:

    Her gyn/onc feels that
    Her gyn/onc feels that further chemo would be even more harsh and it might kill her. He is trying to look at quality of life vs quantity. At this point I feel we OWE her a second opinion and another go with a second line chemo. The ascities has never gone away, but the past two drainings have only been 8 liters total. Im not sure if that is alot or not. She is scheduled for another tap tomorrow afternoon, so we will see what has built up over the past month.

    He said that after 2 treatments we should have seen a response if there was going to be one.*sigh*

    Her bloodwork shows many of her numbers are critically low-albumin and protein being the ones of main concern. She had two units of blood on Tuesday, that was low as well.

    We are all willing to do what it takes if there is hope out there. If nothing else we want the best pallative care available for her.

    You ladies are awesome!

    meds
    What chemo meds is your mom on? Yes, 8 liters is a lot of fluid, from my experience. My mom has major problems with ascites, too. She has a permanent drain in her right lung that she and my dad drain each week. Also, what dr and hospital? Your mom needs an EXPERT in gynological oncology, not just a regular oncologist. She needs to be at a superb hospital. This is super important to know. email me at home if you need quick information: [email protected] I truly believe if my mom had not seen an expert gyno-oncologist she would either be worse off or would not be alive today.

    Hope is the key.
  • eward
    eward Member Posts: 210
    Anita1216 said:

    I meant to also add that her
    I meant to also add that her CA125 from April 21st is 9.1...within a normal range I believe.

    This is all very very confusing and terribly scary.

    CA 125
    Ca numbers are scary and confusing. My mom's have been hovering between 2000 and 3800 for some time now. Her ascites have increased, so I am concerned that her CA will be higher yet this test (tomorrow).
  • Anita1216
    Anita1216 Member Posts: 58
    eward said:

    meds
    What chemo meds is your mom on? Yes, 8 liters is a lot of fluid, from my experience. My mom has major problems with ascites, too. She has a permanent drain in her right lung that she and my dad drain each week. Also, what dr and hospital? Your mom needs an EXPERT in gynological oncology, not just a regular oncologist. She needs to be at a superb hospital. This is super important to know. email me at home if you need quick information: [email protected] I truly believe if my mom had not seen an expert gyno-oncologist she would either be worse off or would not be alive today.

    Hope is the key.

    She is being seen by Michael
    She is being seen by Michael Hicks, who specializes in gyn/onc at Oakwood Hospital in Dearborn, MI. He treated her cervical ca 19 years ago.

    I know the big issue here is her severely weakened state. The chemo dogged her so bad that she is currently in a skilled rehab facility getting OT and PT. Keep in mind her condition was rather poor when this all started. Her doc feels the fluid is an issue and will not perform surgery because of it.

    My brother is hoping the second opinion he is seeking will get us another answer or at the very least some hope for a bit more time.
  • Anita1216
    Anita1216 Member Posts: 58
    Anita1216 said:

    She is being seen by Michael
    She is being seen by Michael Hicks, who specializes in gyn/onc at Oakwood Hospital in Dearborn, MI. He treated her cervical ca 19 years ago.

    I know the big issue here is her severely weakened state. The chemo dogged her so bad that she is currently in a skilled rehab facility getting OT and PT. Keep in mind her condition was rather poor when this all started. Her doc feels the fluid is an issue and will not perform surgery because of it.

    My brother is hoping the second opinion he is seeking will get us another answer or at the very least some hope for a bit more time.

    Just talked to mom..*sigh*
    Just talked to mom..*sigh* they drained another 10 liters of fluid from her abdomen. I am sitting here half in tears. I was stupidly hoping there would not be more fluid than just a month ago. They drained 6 liters late last month. I am feeling so hopeless this afternoon and I just want someone to make this feeling go away.

    This all just SUCKS!!!!!