uterine papillary serous carcinoma

hermothersdaughter

i joined the group a bit ago. just wanted to kind of say hi in a new thread. 

my mom was diagnosed in 8/ 2012 with uterine papillary serous carcinoma.  very surreal, and ~even though we are hopeful, still scary. 1st time around she had a total hysterectomy 6 rounds of chemo, and radiation. 

she is currently in recurrance.  has just completed 3rd chemo treatment for st 4. this week, she goes in for a scan, we find out in about a week and a half if the chemo is shrinking the tumors. the tumors are on her esphogus, kidney, lungs, abdomen, and some  swelling of the lymph nodes. 

even though ,the fact that this discussion board is necessary, even has to be here is rotten~it  is , so helpful to read the posts from all of you living, and thriving with cancer. all of this, gives hope. thank you

blessings, jennie

nempark

So sorry Jennie!!!

I know how you feel Jennie I have been through this and when I was just recovering my daughter was diagnosed so I definitely know how you feel.  I can only tell you to hang in there and let's hope for the best.  I always remember what Maya Angelo said "however bad it seems today, life goes on and it does get better tomorrow. Love mom, give  all you can, give her big hugs and tell her how much you love her.  I remember when my daughter was diagnosed the first thing I did was to tell her that I was sorry and I apologize for anything that I said or did that hurt her.  So talk to mom, love her and discuss everything under the sun.  None of us know how things will turn out, so the best thing for us is to just love love and love mom.  Please let me know how she is doing and don't forget to take care of yourself. 

Lou Ann M

Just wanting to say Hi

Your mom and I are on the same journey in many ways.  I was also diagnosed in 8/12 but with ppillary serous endometrial adenocarcinoma. I have had 2 periods of remission but am also undergoing a reacurrence.

Family is so important.  i am glad your mom has a caring daughter.  Your support must mean the world to her.  I know how much the support and love of my children mean to me( One of them is also a Jennifer).  As you know, cancer is not easy, but I have found that the life I have now is pretty awesom as families become closer.  Prayers and hgs for your mom and you.

P.S.  I think sometimes this is harder on our loved ones.

NoTimeForCancer

Jennie, thank you for

Jennie, thank you for posting.  Please know many of us could not make it through all the diagnosis, surgery, and treatment without the love and support of our family. There is nothing like your family who knows how you like your food prepared or house cleaned, or anything like that. 

You, your mother, and your family are in my prayers.

hermothersdaughter

nempark said:

So sorry Jennie!!!

I know how you feel Jennie I have been through this and when I was just recovering my daughter was diagnosed so I definitely know how you feel.  I can only tell you to hang in there and let's hope for the best.  I always remember what Maya Angelo said "however bad it seems today, life goes on and it does get better tomorrow. Love mom, give  all you can, give her big hugs and tell her how much you love her.  I remember when my daughter was diagnosed the first thing I did was to tell her that I was sorry and I apologize for anything that I said or did that hurt her.  So talk to mom, love her and discuss everything under the sun.  None of us know how things will turn out, so the best thing for us is to just love love and love mom.  Please let me know how she is doing and don't forget to take care of yourself. 

thank you

thank you.  sorry it took so long to respond. i am not so tech saavy, and it took me awhile to figure out how to  find this discussion again. thank you for your input. i hope all is going well with your daughter.  my mom just finished her 5 chemo.  she is scheduled for 6, and if all goes well, she will do one every 21 days- a lesser dose. glad there is a plan; but hate that it is chemo every 21 days. hate what chemo does to the healthy cells. 

hermothersdaughter

Lou Ann M said:

Just wanting to say Hi

Your mom and I are on the same journey in many ways.  I was also diagnosed in 8/12 but with ppillary serous endometrial adenocarcinoma. I have had 2 periods of remission but am also undergoing a reacurrence.

Family is so important.  i am glad your mom has a caring daughter.  Your support must mean the world to her.  I know how much the support and love of my children mean to me( One of them is also a Jennifer).  As you know, cancer is not easy, but I have found that the life I have now is pretty awesom as families become closer.  Prayers and hgs for your mom and you.

P.S.  I think sometimes this is harder on our loved ones.

thank you lou ann

thank you lou ann. how are your treatments going?

hermothersdaughter

NoTimeForCancer said:

Jennie, thank you for

Jennie, thank you for posting.  Please know many of us could not make it through all the diagnosis, surgery, and treatment without the love and support of our family. There is nothing like your family who knows how you like your food prepared or house cleaned, or anything like that. 

You, your mother, and your family are in my prayers.

thank you

hi, thank you for your input. i have read a lot of your posts. i don't post a lot; but i read alot. these discussion boards are so helpful. it feels awkward being a family member posting, i guess that is why i don't respond, or post; but with my moms diagnosis~ i find these posts on the discussion boards, specifically the upsc boards really hopeful, and helpful. thank you

Lou Ann M

hermothersdaughter said:

thank you lou ann

thank you lou ann. how are your treatments going?

Treatments

I had chemo #20 on Tuesday, the 3rd of Doxil.  So far each time the side effects have been very different so I am still not sure what to expect.  After the next Doxil. I will have a Cscan and and an echocardiogram.  Hopefull they will show some progress.  i am so blessed with a wonderfull family as i know our mother is.  Prayers and hugs to both of you.  Lou Ann

Jeannemae

UPSC IIIc

Wife was diagnosed with the above August 2013. After six round of Carbo and Cisplatin went to two other drugs for three more treatments then brachytherapy . Has matasticized to sitz bone, femur and brain with five lesions. We have traveled extensively through out this journey to Europe, scandanavia and Russia but I fear things are coming to a halt. Wife walking with noticeable limp, is now in radiation for brain and I am near tears every day. Has anyone survived with metasticized brain tumor? Hoping for tomorrow becoming increasingly hard to do. Have been married for 48 years and would be so greatful to make 50.

NoTimeForCancer

Jeannemae said:

UPSC IIIc

Wife was diagnosed with the above August 2013. After six round of Carbo and Cisplatin went to two other drugs for three more treatments then brachytherapy . Has matasticized to sitz bone, femur and brain with five lesions. We have traveled extensively through out this journey to Europe, scandanavia and Russia but I fear things are coming to a halt. Wife walking with noticeable limp, is now in radiation for brain and I am near tears every day. Has anyone survived with metasticized brain tumor? Hoping for tomorrow becoming increasingly hard to do. Have been married for 48 years and would be so greatful to make 50.

Jeannemae, I suspect that may

Jeannemae, I suspect that may be your wife's name, so let me tell you I am so sorry to hear everything you and your wife are going through.  I can't imagine what you are going through and while I know the women here will chime in with their support, I hope you can find someone to talk to to help you.  My prayers for you and your wife.

soul-mate

Jeannemae said:

UPSC IIIc

Wife was diagnosed with the above August 2013. After six round of Carbo and Cisplatin went to two other drugs for three more treatments then brachytherapy . Has matasticized to sitz bone, femur and brain with five lesions. We have traveled extensively through out this journey to Europe, scandanavia and Russia but I fear things are coming to a halt. Wife walking with noticeable limp, is now in radiation for brain and I am near tears every day. Has anyone survived with metasticized brain tumor? Hoping for tomorrow becoming increasingly hard to do. Have been married for 48 years and would be so greatful to make 50.

Yes !! to hoping for tomorrow.

http://csn.cancer.org/node/294682 this is a post from ovarian cancer discussion boards. Yes to your question about mets to brain. Hope this gives you a bit of light at the end of the tunnel. Best wishes on this journey.

SOUL-MATE

hermothersdaughter

Lou Ann M said:

Treatments

I had chemo #20 on Tuesday, the 3rd of Doxil.  So far each time the side effects have been very different so I am still not sure what to expect.  After the next Doxil. I will have a Cscan and and an echocardiogram.  Hopefull they will show some progress.  i am so blessed with a wonderfull family as i know our mother is.  Prayers and hugs to both of you.  Lou Ann

hi lou ann,
i hope all is

hi lou ann,

i hope all is going well for you, and the doxil is proving effective.

my mom has just started doxil last week. she did thesecond, 6 rounds of heavy, then started avastin maintenance .. got 2 treatments into them, and we see that tumors are not shrinking, grew 25 %~so her dr asked if she would like to start doxil, give it a try-- or, as the dr said, if there was anyhting else you wanted to try, this would be the time. ... alternatives. 

we are starting simpson oil, carrot juicing as well. can't hurt~ and for now the doxil. (she already takes liquid chlorophyl to help with oxygen, and alkeline. it works well for her, and vit. c, and beat juiceing for kidney inflamation)

dr says she is not sure if there is 3 mos. 6 mos, or a year.. depends how she does with doxil, and if it can slow them down. 

we are also considering dca (sodium dichloracetate). my dad was on that; but did not llive long enough for it to kick in.

forgive me for saying this, if it sounds hard~ but so hard to believe potential better treatments exist.. like virus therapy- that all cancer patients with few options can't have access to now. 

if virus therapy continues to do well in  the rest of trials.. and is the mode of therapy in the future~so unreal to think those that would agree to it, could not get it now.

it seems like a pipe dream.. virus therapy.. so close, and so far. sorry, if i sound morose. don't mean to .. staying positive mostly, and enjoying our time together..but some days .. are tougher.

God bless, check in with all of you soon. thank you for keeping in touch. so grateful people are there.

hermothersdaughter

Jeannemae said:

UPSC IIIc

Wife was diagnosed with the above August 2013. After six round of Carbo and Cisplatin went to two other drugs for three more treatments then brachytherapy . Has matasticized to sitz bone, femur and brain with five lesions. We have traveled extensively through out this journey to Europe, scandanavia and Russia but I fear things are coming to a halt. Wife walking with noticeable limp, is now in radiation for brain and I am near tears every day. Has anyone survived with metasticized brain tumor? Hoping for tomorrow becoming increasingly hard to do. Have been married for 48 years and would be so greatful to make 50.

God bless you both..

God bless you both..

hermothersdaughter

hermothersdaughter said:

thank you

thank you.  sorry it took so long to respond. i am not so tech saavy, and it took me awhile to figure out how to  find this discussion again. thank you for your input. i hope all is going well with your daughter.  my mom just finished her 5 chemo.  she is scheduled for 6, and if all goes well, she will do one every 21 days- a lesser dose. glad there is a plan; but hate that it is chemo every 21 days. hate what chemo does to the healthy cells. 

and yes, we are spending lots

and yes, we are spending lots of time with eachother. so grateful to have this time with her. we have always  expressed our love, and had good conversations~but lately~ i see the parts of her in me, that are her completely..like i am bits and pieces of her and my father, and it makes me.. i see where she exists in me~how much i have counted on her my whole life, and still do. i have always admired mymother, and tried to do things that make her happy.. with the exception of a brief period in my 20's where i rebeled.. i was a late comer to the teen age rebellion, i think. then when i woke up from that, i just accepted, i still want to make my parents proud. i am now 53 years old..both my parents told me they are proud of me, which is nce~but i still try to make my om happy by doing little things, i know she wants done, or can not do. it's o.k.  with me that i try to pease her. i know a lot of pole write books about breaking free from our parents and all that; but why?  what's so wrong with enjoying parents as people? mine weren't perfect; but they were perfect for me.. i learned a lot, and had a lot of fun with them. still have great fun with ,y mom. she always insistes on making everything, a kind of celebration, or event. doesn't like to wallow in sadness. feel it; but live. she has always been this way. i am lucky.  i pray we get to grow older together. i pray this works~ and gives us a bunch more time. 

hermothersdaughter

Lou Ann M said:

Treatments

I had chemo #20 on Tuesday, the 3rd of Doxil.  So far each time the side effects have been very different so I am still not sure what to expect.  After the next Doxil. I will have a Cscan and and an echocardiogram.  Hopefull they will show some progress.  i am so blessed with a wonderfull family as i know our mother is.  Prayers and hugs to both of you.  Lou Ann

hi , i was just wondering how

hi , i was just wondering how the doxil went? how are you?

hermothersdaughter

Jeannemae said:

UPSC IIIc

Wife was diagnosed with the above August 2013. After six round of Carbo and Cisplatin went to two other drugs for three more treatments then brachytherapy . Has matasticized to sitz bone, femur and brain with five lesions. We have traveled extensively through out this journey to Europe, scandanavia and Russia but I fear things are coming to a halt. Wife walking with noticeable limp, is now in radiation for brain and I am near tears every day. Has anyone survived with metasticized brain tumor? Hoping for tomorrow becoming increasingly hard to do. Have been married for 48 years and would be so greatful to make 50.

hi, i wanted to see how you

hi, i wanted to  check in with everyone, see how you you all are, and how treaments are going. hope all are well. blessinsg, j

hermothersdaughter

Jeannemae said:

UPSC IIIc

Wife was diagnosed with the above August 2013. After six round of Carbo and Cisplatin went to two other drugs for three more treatments then brachytherapy . Has matasticized to sitz bone, femur and brain with five lesions. We have traveled extensively through out this journey to Europe, scandanavia and Russia but I fear things are coming to a halt. Wife walking with noticeable limp, is now in radiation for brain and I am near tears every day. Has anyone survived with metasticized brain tumor? Hoping for tomorrow becoming increasingly hard to do. Have been married for 48 years and would be so greatful to make 50.

how are you both? i don't

Jeannemae

how are you both? i don't know if this helps you at all; but we have my mom on suppleents, as drs have released her bascially, saying see you~ but there are so many supplements out there. worht a try. how are you?

AWK

hermothersdaughter said:

how are you both? i don't

Jeannemae

how are you both? i don't know if this helps you at all; but we have my mom on suppleents, as drs have released her bascially, saying see you~ but there are so many supplements out there. worht a try. how are you?

You are such a great source of support to her

How are all of you doing with this?  Is your mom a candidate for clinical trials or even interested in going that route?  I just started one last week.  We will know by early September if it is working or not.  Sending hugs.  Anne

Lou Ann M

hermothersdaughter said:

hi , i was just wondering how

hi , i was just wondering how the doxil went? how are you?

Doxil is working, but working

Doxil is working, but working slowly,  One new tumor in my chest, but ones in my abdomen shank a little, So I will call that good news.  I usually have 2 weeks of feeling miserable and two weeks of feeling pretty good.  Last time around we were able to make a rather long trip to IL. to see ancient relatives.  I am also lucky to have a daughter, Jennifer, That is loving and caring like you are to your mother.  She is truely blessed to have  you.  Sending prayers and hugs for both of you.  Lou Ann

AWK

Lou Ann M said:

Doxil is working, but working

Doxil is working, but working slowly,  One new tumor in my chest, but ones in my abdomen shank a little, So I will call that good news.  I usually have 2 weeks of feeling miserable and two weeks of feeling pretty good.  Last time around we were able to make a rather long trip to IL. to see ancient relatives.  I am also lucky to have a daughter, Jennifer, That is loving and caring like you are to your mother.  She is truely blessed to have  you.  Sending prayers and hugs for both of you.  Lou Ann

So glad it is working for you!

I have been thinking about you and hoping you were responding to it.  Glad you got away; we all need those breaks.  Hugs - Anne

hermothersdaughter

AWK said:

You are such a great source of support to her

How are all of you doing with this?  Is your mom a candidate for clinical trials or even interested in going that route?  I just started one last week.  We will know by early September if it is working or not.  Sending hugs.  Anne

hi awk/ anne,
very much

hi awk/ anne,

very much looking forward to hearing how you are doing with your clinical trial. i wish you prayers. please let  us know when you know anything.

 we did go to a clinical trial onc. a few days ago. she recommended an immuno/chemo trial for my mother, that my mom is applying for. seems there are not a lot of trials for upsc, as there are not a lot of people with it, as we all knnow..  i was  trying to find a clinical trial with the viro therapy at penn, or mayo etc. but as perhaps  guessed, so liitle of this group, not enough to clinical trial. basically when i spoke to them they said they clinical trial cancers they feel will benefit the maximum amount of people. i get it. it makes sense; but hard reality to hear.

   the doxil seems not to work on my mom, her tumors are growing, so she is now taking simpson oil, dca, and avemar.. as well as liquid chlorophyll , b-12, milk thissle, and a few other homeopathics, in hopes this will slow it down a bit. ( we looked into rigvir, and gcmaf, and a few other things~ anyone have experience with that?)

chemo dr pretty much said, doxil isn't working. i'm not God, so i can not say for sure; but judging by your tumor growth, and multiplication~  you have somewhere between 3-6, 11 months.  i feel perhaps, you may not make it passed the end of this year.  please enjoy the time you have with your children, and  consider, not wasting time looking for cures that do not exist.  i suppose it's an odd thing; but honest to say~. i do believe she is in my moms corner and has my moms back~ but i also believe onc, and mds only know a certain aspect of cancer fighting.  i believe there is so much out there to consider in ways to help heal from cancer. especially at this time with viro therapies in clinical trial at penn, and mayo, and other research hospitals-and immuno-therapies, we are at a game changing time with new, and hopeful therapies being developed.

for my family, we for sure, are not ready to give up on my mothers life yet. we know the possible reality facing us, but all of us have been researching on line, therapies i am sure all of you have been reading about, and/or trying as well.

  how disgusting that some humans would try to take advantage of others, scam people  at this point in their lives, with false cures, and treatments ~ just to make money.

weeding through the nonsense takes up such valuable time in finding hopefully, some things that might work~  anyway, that is where we are at with our journey~hoping for a miracle, as i am sure, we all are in each of our individual, and as a group~ journies~ how wonderful it would be  to be able to stay around long enough, with some sort of slowing therapy, until who knows, maybe the virotherapy gets properly tested, and approved, and everyone is still here to get that therapy~.

so here we are for today. in this surreal adventure.

i am sitting at the dining room table, i can hear my mother talking on the phone in the family room. i hold on to this moment. i cherish it, and i pray it multiplies beyond my expectations.

she's off the phone ow, so i am going to go in.

 thank you all for being on this site.  not having to keep a stiff upper lip, knowing you completely understand this ... no judgement, has been  a blessing. i mentioned before, sometimes i just come on and read, no commenting or signing in because i forget my password. so helps to read, and relate to all of you.  so thank you again, until next time.

blessings, jennie