uterine papillary serous carcinoma

hermothersdaughter said:

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

 

So sorry to see this.  Doxil didn't work for me so we moved on to single agent Avastin for 12 treatments.  That kept my tumors stable up until my last scan.  Meaning no new growth but no reduction in size.  My notes from doctors appointments reflect phrases such as progression free survival times or the number of months without progression.  The doctors goal, and mine, is to string together a series of treatments back to back that extend that PFS.  To make this a chronic disease.

In terms of clinical trials I am in one that is being tested across a variety of cancers.  In my case the trials the oncologists look for mirrored either certain characteristics such as no response to two lines of chemo, inoperable and all mets are solid tumors or in other cases my genomic mutations that are targeted are in the trial.  I am the only uterine patient in my trial although there are ovarian, lung, etc in it.  There isn't much of anything specific to UPSC out there, I have it too.  So start with a broad net.  There is a trial out there for Cabozantinib that might be worth checking out.  I was pulled out the day before I was due to start because of a met on my heart.  

there is another thread out there talking about when to stop treatment.  This is something we discussed with my doctors awhile ago and in my mind it is when the treatments start to cause other problems that aren't temporary or of course if and when my disease progresses in an uncontrolled fashion.  I went through this with my father years ago and really thought it out.  The last four months he had with us he wasn't in treatment and we had great conversations, he spent time with long term friends and his siblings, my parents went to Epcot and Disneyworld.  My siblings and I agree that the time was important although very painful too.  

 You are a blessing and comfort to her as is your family I am sure.  I wish we could do more for you here.  Sending prayers and hugs and as our friend Ro always signed off - in peace and caring.  Anne

Lou Ann M said:

So sorry

So sorry to hear this. My thoughts and prayers are with your mother, you and your family. Keep making good memories and checking into research.  Just because the medical community says you have so long does not always mean that it is true.  A friends father in law was told 4 years ago that he had 6 months and he he still amount us.  My father and grandmother both lived over a year after they were told that their time was very limited. New treatments are on the horizon.  Lou Ann 

You're so right about estimates of death.  My dentist's father is in his 90's, has lung cancer, and has refused any treatments.  He's lived 3 or 4 years beyond what he was told to expect, and he's no worse.  My father had a heart attack at 42 and was given 6 mos. to live.  He lived another 42 years!

pinky104 said:

Lou Ann M

You're so right about estimates of death.  My dentist's father is in his 90's, has lung cancer, and has refused any treatments.  He's lived 3 or 4 years beyond what he was told to expect, and he's no worse.  My father had a heart attack at 42 and was given 6 mos. to live.  He lived another 42 years!

When I was diagnosed with UPSC stage IVb, almost 4 years ago, I found information on line that the 5 year life expectancy for this Dx was between 9% and 18%.  When I met with my chemo oncologist for the first time, he volunteered, without my asking, that he could not estimate my longevity.  He told me I was a sample of 1 and no estimates would be valid.

This prognosis helped me live and enjoy every day.  In the last 4 years I've had a step daughter marry a wonderful guy and deliver two equally wonderful little boys.  Like everyone else, both here and everywhere, we don't know when our earthly mission will be completed.  I try to live my life here to the fullest, and trust that tomorrow I'll be where I belong.      

Abbycat2 said:

Life expectancy

I am always amazed when doctors give a time frame for when a person will die. My gyne oncologist told me two months ago that I could "expect a reasonable quality of life for two more years- maybe more". I guess he is trying to prepare me for the inevitable recurrence as I was diagnosed with UPSC, stage 3a. It has been almost 2 years since learning that I had adenocarcinoma. I don't know to what extent I will fight this disease. If I am going to die from this anyway, what is the point of the debilitating treatments?  Not sure what I would do.

I do hope that you, Anne, and Lou Ann and jennie's Mom and soul mate's wife respond well to treatment.

My father was diagnosed with 5 separate cancers in his lifetime: prostate; urinary bladder; lymphoma; basil cell skin cancer and squamous cell skin cancer. He died from old age, just shy of his 98th birthday! The point is, nobody has a crystal ball.

Cathy

Great response Cathy!

It just urks me when doctors tell patients when.   If they can tell when, then they can cure it too then.   They play a guessing game and only look at statistics.   Well like someone here said, your a statisic of one!

I think doctors should give us their advice and opinions, but I think its up to the patient what is best for them.  

My best to you, Cathy!

Kathy

pinky104 said:

Cathy

That's pretty amazing that he survived all those different types.  I've had two, basal cell carcinoma and UPSC, and I feel luck to have survived those.  All those diagnoses must have been unnerving to him.  A nurse in my mother's nursing home years ago told me that people who live very long lives are almost always very stubborn.  They have to be to live that long.  Your father must have had great determination to get past all those obstacles and die of old age.

My Dad aged slower then other people. When he was in his early 90's, he used a gas powered chain saw to remove 5 or 6 massive trees. They were an invasive specie and should never had been planted in the first place, but still- IN HIS 90's! He had such energy. He didn't seemed worried about cancer and perhaps his daughter should take note of that! On 11/20/13, I asked my oldest sister to tell my Dad that I had cancer (as he lived with her) and she told me she just couldn't do it. He passed away later that same day.  

AWK said:

My doctors too emphasize we are a statistic of one

For all I have gone through and the tons of doctors appointments, consults etc I have never asked about prognosis.  I am much more interested in living and moving forward.  But that doesn't diminish my family's fear nor concern.  My job is to keep us all on that path of new memories but to let them share their fears too.  We have had many poignant moments over the last two plus years and will have many more ahead.  Next year alone we have a wedding, a new baby on the way and a big trip planned ( come hell or high water according to my husband).  I have learned to live more in the moment through all of this and because of that I have had amazing experiences.

hugs to all.  Anne

I also have never asked about life expectancy, and none of my doctors have brought it up.  All three seem to agree that I will be on chemo the rest of my life, but they also agree that I could remain stable for a Long time.  They used to mention chemo holidays but not so much anymore.  I will live life fully while I can.  Trip to the coast in Sept.  New great grand baby in March and do hope my 33 year old decides to get married at sometime.  4 kids and only 2 grandkids, seems like I am getting cheatd a little.  Hugs and prayers Lou Ann

hermothersdaughter said:

i love reading that cathys

i love reading that cathys dad made it to 98. that is awesome. my mom got accepted to a clinical trial. began tests for it today. it will be a life long thing. 10 weeks, then every 21 days for life... which we have hope and pray will be for years to come. it is an immunotherapy trial at fox chase.  

So glad that your mom made  into a clinical trial.  Hoping it helps and she goes on for years and years.  Her successes will benefit all of us.  Hugs and prayers  Lou Ann

hermothersdaughter said:

i love reading that cathys

i love reading that cathys dad made it to 98. that is awesome. my mom got accepted to a clinical trial. began tests for it today. it will be a life long thing. 10 weeks, then every 21 days for life... which we have hope and pray will be for years to come. it is an immunotherapy trial at fox chase.  

When you are comfortable would you mind sharing some information on the trial?  it is helpful to the rest of us - the name, research number or drugs involved would be great.  The trial I am currently in is for Aldoxorubicin and Gemzar; patients with solid metastatic tumors that are inoperable and have failed at least one or more lines of treatment.  I failed three - so To speak.

Good luck to you and your family.  Keeping her, and all of you, in my prayers - Anne