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still kicking stage 4 b endometrial cancer

cathyK's picture
cathyK
Posts: 93
Joined: Jul 2009

well I have been peeking around reading posts but not posting much at all, heres an update,
for those looking for survivors of stage 4 b endometrial cancer , as I could not find many at all when i started out looking
I dont concider myself a survivor yet, till i get to 5 years, then I think I can breath again
I am now at 5 month after last treatment and doc visit came up with
clear ultrasound, other than the cyst , which they now think is just liquid and not cancer. doc said I am in remission. with the knowledge that no one that has been treated with stage 4 b endometrial cancer at U of M has lived past 5 years, YET, guess I have to be the first one to do that :)
She is not sure the Ca125 is a good marker as my last doc did not take a ca 125 before operation, he thought ca 125 is not useful in any cancer markers, so now not sure, ca 125 was as high as 44 (taken by accident by his nurse) and low now as 9.5 so wish there were other innexpensive non evasive tests that are good cancer markers .
hopes are high at times and very low at others but mostly even .

so if there is anyone out there I have stage 4 b grade 3 endometrial carcinoma. and still kickin,
got lots to deal with , weight, finances, energy, neuropothy and the abdomen pain, (which has been linked to muscle pain)
working it out day by day. got a great doc at U of M who is encouraging. and figured out the stinkin medicade rules and regs.
Instead of getting tests at hospitals near me and hoping they do exactly what my doc wants , I just get all my tests done at U of M when I have my doc visit , makes for a VERY long day but get the tests done and read by my doc and not by some stranger at which ever hospital the hmo wants me to go to.
it has been a hell ride with Molina and medicade but thank God I have that on my side or I would never have been able to pay for any of the care i am getting ,
really wish the gov would get it together and pas a WORKABLE bill on health care, Obama had the right idea AT FIRST when he said he wanted to mirror Canada's heath care, then all hell broke loose in the parliment , then the bill got worse and worse and worse,
heres hoping .

RoseyR
Posts: 471
Joined: Feb 2011

Kathy,

Will be rooting for you and you have to let us know what your results are, whether good or not!

By the way: I seem to recall that you were diagnosed with MMMT (now called carcinosarcoma); am I right?

Have you made major dietary changes, I wonder, to gain this two-year remission?

A fan,
Rosey

cathyK's picture
cathyK
Posts: 93
Joined: Jul 2009

Rosey,
I am not sure what MMMT is , I have endometrial cancer, that is it, I guess, was told once I had 2 different things going on there, I am horrible about remembering things like that,
about dietary changes, not much, during chemo yes just after chemo yes, but now back to eating what ever I see is easy to make and eat, I am eating more fruit and veg, and much less or none of cold cuts (used to eat a lot) less mt dew, but still eat chips and chocolate and other junk food, just not as much as before,
over weight and need to loose 65 lbs before my orto doctor will operate on my shoulder, it is bone on bone right now , from repetative motion action , sooo eating less and trying to get healthy food into me, not much else different.
cathy

RoseyR
Posts: 471
Joined: Feb 2011

Kathy,

Will be rooting for you and you have to let us know what your results are, whether good or not!

By the way: I seem to recall that you were diagnosed with MMMT (now called carcinosarcoma); am I right?

Have you made major dietary changes, I wonder, to gain this two-year remission?

A fan,
Rosey

ale2903
Posts: 1
Joined: Oct 2014

heeeey! how are you! i love your positivisms. just read this and id love to know how did things went from that point on. wish you the best alwaysss (: wish we can put in contact so that i can tell you my mom's storry as well! it might guv hope to all going through this aituation! take care

Harmony09's picture
Harmony09
Posts: 77
Joined: Aug 2017

Thank you so very much for sharing your journey! I have Stage IV b Grade 3 clear cell carcinoma. Today I did my 11th radiation of 25. Before this I did 3 rounds of Carbo/Taxol, 3 weeks apart, and will do that again after the radiation plus 3 brachy Tx. It's getting to the point where I just want to quit and feel "normal" for a while. AND, after reading the grim prognosis, I am starting to wonder if any of this is worth it. I am 43 years young and have a two year old, 9 year old, 18 year old, and a 20 year old, who has my 1 year old granddaughter. Recently all I can think about is dying while they are all way too young. I would love to hear from more survivors of this cancer as well.

Thanks again and best wishes to you and everyone who posted.

Jacjac2's picture
Jacjac2
Posts: 44
Joined: Feb 2016

Have been dealing with stage 4 endometrial cancer since Dec. 2015.  I have never gotten rid of it.  Did the Carbo/Taxol, radiation, harmone therapy and keep having one tumor grow, shrink, grow more, shrink, grow more.  It is in several other areas as well.  She has me on Doxil now (3 treatments and have developed a severe chemo burn).  I am miserable.  I have tried everything form Aveeno, Eucurine, Bag Balm, Udder Cream and now I have some infections, oh Calimine Lotion as well.   Waiting on a new compound that is being mixed for me.  My thought, treatments are worse than the cancer sometimes.  Hanging in there but I refuse to take more treatments till I get rid of this burn on my torso area.

Harmony09's picture
Harmony09
Posts: 77
Joined: Aug 2017

Hello Jacjac2. I sure hope you get some relief soon! I got horrific burns from the Interferon/Ribavirin for Hep C years ago. The Gold Bond lotion in the teal/green container was a MIRACLE! Maybe it's worth a try.

Thank you for keeping it real regarding your journey. I had everything that could be removed...removed, except for what couldn't be taken from the peritoneal lining of my bladder. Even if I had the whole bladder removed, it seems as if this kind of cancer is going to keep showing up somewhere. Therefore, I will be weighing my options very carefully after this frontline treatment.

AGAIN, I hope you feel better soon!

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