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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 .

california_artist's picture
california_artist
Posts: 865
Joined: Jan 2009

Just popped in for a minute and was thrilled to see you are hanging in there. So pleased to hear that the doctors at the UM took the time to figure out how you could best get your care.

I had been just moping around, as my truck wouldn't allow me to go faster than 25mph without threats of things falling off. My son is here from Germany, and fixed my sporting twenty-rive year old Mazda RX-7 in less than twenty minutes. Now, for the first time in two years, I can go farther than two or three miles and plan on taking some road trips with my granddaugher.

She has traveled with my more than once back and forth across the coutry. The very first thing she said to me when she saw the car was running was "ROAD TRIP, YIPPIE"

One of my favorite things to do is just to get in the car with a few things and start driving, looking at all that's outside of my little apartment. I hope the joy will creep back in again.

Again, thinking of you and the other here who make my heart glad I've gotten to know them.

Love and great big hugs and kisses to you all,

Claudia

TiggersDoBounce's picture
TiggersDoBounce
Posts: 413
Joined: Oct 2009

So glad to see you are making progress dealing with the system...so happy to hear you are in remission!!

Claudia, nice to see you doing so well as well!!

Laurie

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

Cathy,

I'm SO HAPPY FOR YOU. I remember all the angst and bad treatment you endured. It is wonderful that you have a great doc and have been able to maneuver the Medicaid system - not a small accomplishment.

You seem in great spirits and YES you will not be a statistic like you have already proven. I will continue to pray for you on this journey. The course that you are on seems to be working for you.

And Dear Claudia, It's so nice to hear from you again. Glad you are getting wheels again - put Florida on your list of places to cruise to!!!! I see my doc on Friday the 2nd - keep your fingers crossed. Are you still tuning in at 8pm???

With warm regards and many blessings, Mary Ann

kathybd
Posts: 126
Joined: Jul 2009

Cathy
You certainly inspire me with your fortitude. Are you at U of Michigan in Ann Arbor or U of Minnesota in Mpls? Sounds like you have a great Doc...a keeper for sure.
Prayers and best wishes for a long, healthy, happy life!
Kathy

wannaknow
Posts: 12
Joined: Apr 2010

Hi all...I just had surgery on the 22nd of March..onco/gyno said my cancer "started" in the uterus then went down to my cervix then went up to my ovaries and 2 lymph nodes..he could only remove my ovaries and tubes and the 2 lymph nodes. I have to have carbo/taxol starting this friday..(April 16th)...he said its the type of cancer that normally starts in the ovaries..papillary serous carcinoma ..of the UTERUS. soooo do i say i have uterine cancer or ovarian? also..he told my family its stage 4. but also said he doesnt put stock in staging. hmmm could that be a good thing or bad? ...anyway ..the plan is he wants the chemo to shrink the tumor in my uterus/cervix so he can remove them..said after my 3rd treatment he will do a cat scan..if it did..which he gave me a 75% chance that it will ..then after surgery 3 more chemo treatments. so my question..is it uterine or ovarian cancer??? Thanks everyone! Much love, Kim

Always Hopeful
Posts: 234
Joined: May 2010

Hi Kim,
My surgery and subsequent pathology reports found that the tumor remained in my endometrial lining, all of the other gyne organs were clear of cancer, my lymph nodes were also clear. However, two "dots" were found on my colon and scraped off. The diagnosis was Uterine Papillary Serous Carcinoma. As explained to me, it is a very aggressive type that doesn't follow the rules of other uterine cancer cells but is more like ovarian cancer. The treatment, then, is like the treatment for ovarian cancer. I, too, am on the Carbo/Taxol regimin for 6 cycles, total of 18 weeks. I receive taxol EVERY week and the carbo every third week. As I explained in other postings, my medical/chemo onc gave me the option after stating that Taxol each week has been found to be more effective in treating the cancer and regarding reaction problems. So far so good. I just started my 2nd cycle on May 19th.

I am so sorry to hear that additional surgery is still ahead of you. Thankfully, that was not my situation since the radical hysterectomy was able to be done initially. I know it's easy for me to say "Hang in There" but that's the only thing you can do now, in addition to being sure you stay as positive as possible. Hopefully, your support system is sending out much postive energy to you. It is so very important!

There are other postings specific to Uterine Papillary Serous Carcinoma on this discussion board. Have you found and read them? They are so chock full of information that helps soothe your mind...the sharings are supportive. I highly suggest you scroll through and famiiarize yourself, as I have been doing. I'm confident that you will find so much information and insight for what you "wannaknow", Kim.

The best thing to know is that we are not alone...sad to say.

Peace and hope,

JJ

deekat
Posts: 5
Joined: Jun 2011

Hi Kim,

I was diagnosed with endometrial cancer-had a complete hysterectomoy on 5/27- (Da Vinci Robot). That went fine but doc found teeny tiny spot on my colon. One piece showed no cancer the other did. He did not mention UPSC? to me. I am set to start the every 3 weeks-6 rounds of chemo the first week in July with the Carbo/Taxol. I am not sure what to expect. I guess I should be asking my doc this (I will-but you know you are in such a state that you forget to ask a lot of stuff)- do they then do an entire body scan to make sure there is no cancer left anywhere? He did not mention that to me yet.
Anyone know the chances of recurrance?

Bless you-good luck-thanks for listening.

Dee

RoseyR
Posts: 471
Joined: Feb 2011

Kim,

Can't asnwer your question about uterine versus ovarian cancer, but if you're soon starting taxol and carboplatin, you might find some help re diet and supplements from my latest responses on our discussion board. Look under "new recipes" and "what to eat during chemo."

Rosey

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

it is u of michigan as I live 3 1/2 hr north of there
thanks for the well wishes, prayin

kathybd
Posts: 126
Joined: Jul 2009

My nephew is doing research there and my brother in law used to run the med school. You are definitely in good hands. Love your positive attitude. It goes a long way.
Take good care!
Kathy

snowy1158
Posts: 4
Joined: Mar 2010

Hi Cathyk! First of all Congrats on your good news!!! I am so glad to find someone who has stage 4 cancer and is surviving!! That gives me some HOPE. I was diagnosed 4/5/06 after my complete hysterectomy with stage 3B endometrial cancer. My surgeon she got all she could find but suggested I have chemo as a precautionary measure. I found a gynocologist/oncologist and started chemo in 6/2006. I had 6 treatments of carbo/taxol. I had my treatments once every 3 weeks. The side effects were a little rough...but I made it through and by the time I was finished in October my markers were down to like 18. I was thrilled but my doctor didnt seem to be as glad as i was. He said I still had to be checked every 3 months. The next year..10 months to be exact...my cancer had metastasized to my lungs. Time for more chemo...my markers werent real high...like 50. I just had 3 rounds of cisplatin alone, but had an allergic reaction on my very last trreatment. No more platinum drugs for me the doc said. He did tell me the nodules on my lungs were very very small and growing so slowly, another thing that made me feel good. In 2009 on a checkup with him, he told me the strangest thing that really shocked me. He said he couldnt understand why this cancer hadnt killed me yet...he said I should have died a year and a half ago. I told him maybe it was my FAITH in GOD, and yes, even my faith in him (my doctor. I am now in stage 4, and it scares me. I am not ready to die Cathy. I just did my 2nd treatment yesterday of doxirubicin (hope I spelled that right). I was told several years ago that most stage 4 dont make it...I dont want to be that statistic. YOU GIVE ME TO THE HOPE AND STRENGTH TO GO ON!!! GOD BLESS YOU AND THANK YOU SO MUCH!!! I wish all the best for you and everyone else who is fighting cancer.

clscurnutt's picture
clscurnutt
Posts: 26
Joined: Nov 2009

Besides your faith in god, faith in your doctor is so critical. Keep on fighting and please continue to let us know your progress. I'm finding it more wonderful each day to come to this site and see how others are doing. I don't feel so alone in this struggle. I have great family to support me, but it still can get me down. Never give up! Never surrender!

snowy1158
Posts: 4
Joined: Mar 2010

Thank you for the encouraging words..."never Give Up and Never Surrender"! There have been a lot of times over the past 4 years that I have wondered if I should stop treatment...but I kept on going. I wont lie, it has been really depressing at times and I dont want to cry in front of others so I do that when I am alone at home. None of my family lives close to me, so that is a little hard too....there is just my boyfriend to support me. He is so wonderful at times, but other times he doesnt understand what I am going through. I live in a very small town so there are no support groups...that is why I am thankful for this website and all the wonderful and encouraging information I have read here. I wish you the best and hope you continue to do great!! I will let everyone know how I am doing as I continue this fight! God Bless!

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

well snowy I also live in a small town , no support groups , my first doc was 2 hr away new one is 3 1/2 hr away.
no family or friends near and ni boyfriend, I am also thankful for the newsgroup . as here I see many results to treatment, I keep hearing from my friends, "this friend died, or that friend is having serious complications with cancer , and gets me down" here I see results good and bad and this is much better .
thanks all for posting , and hope that everyone keeps posting after treatiment , to encourage others, as I have looked and looked when i was first diagnosed with stage 4 b grade 3 endometrial cancer I could find NO one who had lived more than 2 years with this diagnosis, thanks everyone !
cathy

Iowa44
Posts: 1
Joined: Dec 2014

Hi snowy11580!

I too was diagnosed in Feb. 2006 after having a complete hysterectomy.  I held off on chemo and radiation as I had no health insurance and instead did an herbal protocol.  In Dec 2012 my left leg swelled up twice the size of my right leg and went to the hospital to discover I also had a blood clot in the leg and 3 clots in my lungs due to the cancer metasticizing.  Have 30-40 lesions in my lungs and tumor in my pelvic area. Started taxol/carbo chemo treatments for 8 rounds every 3 weeks.  The last treatment I had an anaphylactic reaction to the taxol.  That was the end of May 2013.  We held off until Feb. of this year and then did one chemo of carbo only.  Spent the entire month feeling awful and then was hospitalized with diverticulitis which my oncologist thinks was probably starting right before the chemo.  Spent a few days in the hospital but spent a lot of the summer with abdominal pain which I thought was more of a food sensitivity issue.  Eventually that calmed down, but in October I started having a little vaginal bleeding that made us be concerned about the cancer perferating the intestine so did one round of Doxil which seemed to go fairly well, but 6 days later I spiked a 103.1 fever in an hour with no symptioms prior to it.  Thought I was freezing to death....ended up in the ER and admitted for infection.  Nurse said I didn't have any signs to warn me because my immune system was really, really low.  Got the IV antibiotics for a couple of days and then home with Augmentin and Zmax.  Then end of Nov. started a slight bit of vaginal bleeding so I am now receiving radiation for 20 days with Tomo therapy.  So far so good.  Took the pain and bleeding away.  It is soooo nice to see you have been dealing with about the same thing for the same amount of time.  I keep reminding myself that there are people out there with stage 4 cancers that have been living with it for years and that I don't have to be in the average group for survivorship.

Hang in there my friend.  I no longer work so that I can focus on self care, but I dream that someday I will have the strength to see clients again. 

nempark
Posts: 683
Joined: Apr 2010

I was diagnosed with stage 1A endo cancer and had a total hysterectomy in November 2009. cancer did not spread. Had six sessions of chemo. first scan after chemo was good. chest xray was good. doc says I am in remission. what I want to know is since I have had everything out and doc says everything was good why do I have to continue going for checkup and scans every two months. You are doing great hang in there and be positive you can do it we are all going to do it. Jaa

kansasgal's picture
kansasgal
Posts: 122
Joined: Aug 2009

Hi, nempark!

Perhaps although your endometrial cancer was found at an early stage (1A) it is a grade 2 or 3 cancer rather than a grade 1. Review your pathology report issued following your hysterectomy to see if there is information about the grade or perhaps the type (I or II). Call your oncologist's office and ask your question. Someone should return your call with the answer to your question concerning ongoing checkups.

Following my hysterectomy in the late spring of 2009 I was diagnosed with stage 1A grade 3 serous endometrial cancer plus stage 1B grade 2 endometrial cancer. The nine lymph nodes removed and the pelvic cavity wash were all all "clean". Like you I also had six sessions of chemo (carbo/taxol). In addition I had three rounds of vaginal brachytherapy radiation. My treatment beyond the hysterectomy was due to the stage 1A grade 3 endometrial cancer. On this discussion board I identify my cancer as Stage 1A UPSC (uterine papillary serous carcinoma). My gyn/oncologist calls it "very aggressive and highly recurrent". If I had only been diagnosed with the stage 1B grade 2 endometrial cancer, my gyn/onc would have recommended no further treatment beyond the hysterectomy.

My first checkups were at 2-month intervals. With my recent CT showing NED (no evidence of disease) I have "graduated" to checkups at 4-month intervals.

I am a person who likes to know what is going on as much as possible. I hope your question is answered soon!

Sally

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

ok update, just had a CT and visit with gyn/onc, results for Ct
NO evidence of metastatic disease detected
3 cm cystic collection decreased from the previous exam
negative CT of the chest
this is 6 months 20 days after last chemo. this is how my Doc is timing it.
I am jumping up and down and booking fests as we speak.
hope this helps others with stage 4 b grade 3 endometrial adenocarcinoma/papillary
off to thinking about next visit in 3 months and more good news!
Cathy

Ro10's picture
Ro10
Posts: 1579
Joined: Jan 2009

May you continue to kick for a very long time. Celebrate your good news. I am so happy for you. In peace and caring.

norma2's picture
norma2
Posts: 486
Joined: Aug 2009

I think the cancer statistics are over-rated. I know clinically they have to use statistics to gauge the effectiveness of treatments. Statistics, however, are at times skewed because they do not account for the tenacity of the human spirit.

Also the statistics are ones that are 5 yrs old. Remember they are using a 5 yr rule as to survival. Well, 5 yrs ago they did not use some of the methods, treatments, and protocols that they use today. So we are the 5 yr people for the future. Looking back in time 25 yrs. we would have had a more dismal future. Now with the chemo, treatments, surgeries, and non-traditional approaches to cancer our future is much better. And I truly believe with the advances being made in cancer cure there will be even better and more effective ways just a little down the road.

I am celebrating with you on your good news. Norma

lovingmylife
Posts: 6
Joined: May 2010

Cathy, I had surgery for stage IV uterine cancer March of 2009. I had 6 rounds of chemo which was complete in July 2009. All my tests have come back negative so far and my next appointment early July 2010 which will be one year mark. I am thrilled to hear of how you are doing and rejoice with you. I am almost a year out and have decided to keep my port until next July at least.
I also live in a very small town with no support group and have to travel an hour to my gyn/onc. Please keep us updated as you continue your journey as I love to read and can feel the energy you have for life.
God Bless!

clscurnutt's picture
clscurnutt
Posts: 26
Joined: Nov 2009

What great news! I'll jump up and down with you.

upsofloating's picture
upsofloating
Posts: 473
Joined: Dec 2009

So glad you are still 'kicking' it!!! I am also a Stage 4B UPSC survivor - diagnosis Dec 07//surgery/staging Jan 08, so hearing good news from a sister is soooo hopeful! Enjoy every day. Annie

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

congrats on the good news Annie and Cathy - I plan to join you soon (being NED).

Re: staging and cancer you have. I think you doc is the person to answer that one.

Mary Ann

sitchy57's picture
sitchy57
Posts: 27
Joined: Sep 2010

Cathy I have been diagnoised with endometrial cancer and will find out the stage this next Wed. the 22nd. I have been doctoring in Grand Rapids Mi. with a gyn-onc. I just had the hyst on Sept. 8th so I am still recovering. I will try to keep you posted as to what stage my cancer is and what treatment I will be having.

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

hey sitchy57 you say your doc is in Grand Rapids, might he be Dr Downey?? that is my new and last oncologist , been through 2 before him and he is fantastic. very caring and attentive to everything when I go for my visits.
my e mail is showyourfaith@yahoo.com give a shout when you are around
cathy k

num1gntfan
Posts: 2
Joined: May 2010

Cathy,

In Jan. 2010 I was diagnosed with uterine cancer stage 4b.
My CA-125 was 130. and my oncologist ordered the surgery in late Feb.
I had my uterus, ovaries, and omentum removed. It had spread that far.
Cervix were clear.
Thus far I had 3 chemo treatments of carbo/ taxol and handled them well.
My last CA-125 reading was 16.
I will be going through 28 treatments of radiation (starting this Monday)
then 3 more chemo sessions.
I have every intention of going into a LONG LONG remission. (Much longer than 5 years)
My situation is kind of strange because I am only 39 years old.
I have the oncologist and hemotologists baffeled.
I will keep in touch and let you know how things are going.
We will BOTH be long term survivors of this.....Just watch how we change those stupid stats!!!
Feel free to e-mail me any time. Num1GNTfan@aol.com
RoseAnn

Jniccoli21
Posts: 3
Joined: Sep 2010

Hello,
Congrats on fighting on this horrible cancer. My mother is suffering badly. Her cancer has spread to her L5 and sarcrum. She is in a lot of pain. She has gone through radiation, hormonal therapy and chemo. Seemed nothing worked and she is going down hill. I wish I could change her pain. The doctor are giving up on her and say she has months left. Her legs are swollen, can hardly walk and is on heavy pain pills. I would like to know who and where you are treated? I would like to know what you are doing to fight this cancer? Please let me know. Jniccoli21@yahoo.com

Thank you

Jen

EABurns
Posts: 1
Joined: May 2010

Diagnosed Nov 2009 with what my doctors tell me is a rare type of Endometrial Cancer called Serous Papillary Carcinoma. Had total abdominal hysterectomy with removal of ovaries, uterus, omentum, and part of colon. January 2010 had first round of Carbo and Taxol up through April and then told is wasn't affective becauste tumor showed no signs of shrinking so switched to Doxil in April and had 3 treatments of it through June and switched to Avastin which they now say is no working either and there is evidence of spots on my liver. I have had bouts of the usual nausea, vomitting, diahrea, pain, etc..... including, fluid buildup due to bowel obstruction caused by the tumor.
The doctors seem to have given up and have pretty much told me that the only thing left to try is Gemzar so I'm scheduled for my first treatment 09/14/10 and pray that helps.

I am very very scared and feel hopeless because the doctors seem to have given up.
I'm looking for some suggestions for other cancer centers or procedures or chemo tha may be helpful that haven't been offered to me.

Helplessly waiting a reply
Ann

tears2overcome
Posts: 98
Joined: Jan 2010

Just before christmas 2009 i was given news I had uterine cancer, and never heard anything else, and didn't want to know.I had surgery January 4th, 2010, removed baby oven, ovaries etc, lymph nodes were fine, but was diagnosed with clear cell carcinoma stage4 even today not sure of grade, but sure it was bad. Was told this was aggressive cancer, and need to get surgery completed right away. Upon taking out my parts cancer was found in my appendix,and that was removed. I was told there was light dusting of cells left behind around stomach area, needed chemo. Feb I started chemo, 6 sessions every 3 weeks, carpo/toxil. My blood tests are not registering any CA markings at that time, blood has never shown any abnormalities throughout it all, so onc told me we have to rely on ct and petscans. After 4th session i had ct scan. Onc said looked good but wanted to finish my last 2 treatments. Pet scan showed a hot spot in my colon but everything else was looking good. Went for a colonoscopy and found 2 polopys one was inch that was verge of becoming colon cancer, as they tell me got it out should not worry. I ended up getting burnt from chemo on second treatment, allergic to nuelasta, and nueropathy. I had to build my white blood cells on my own, and the neuropathy is bad in one foot, left one. They say take time for me to get over. I am now going for my 3 month check up with onc at end of this month. I also have scar tissue in my colon that is painful and have been told it's from surgery, chemo and everything else. I will be talking to my onc about this at my visit end of september it's so painful at times.
I have no family near me, and friends seem to have walked away on me......my soon to be ex husband hung in there and took me to appts and helped where needed. I thank god I am here, that i had the strength inside to fight this, I didnt' think I could, reality hit either I remain strong and fight or lay down and let it get to me.
I never understood much about cancer until i got mine and I am still learning, but what I do remember is them telling me this is aggressive and need aggressive treatment to kill cells before it gets me.
I am thankful for this site, and others who share thier strength....and tears as I have had many and still do at times. Bless you all for your posts and strength in making me a strong lady.

Ro10's picture
Ro10
Posts: 1579
Joined: Jan 2009

Sorry to hear of your diagnosis. Sorry that you are feeling helpless, also. You have been through so much already. Sorry that the drugs are not working for you. Since you just joined the site, you may not have read the posts from Connie and Diane about their treatments. Look under posts "Going for Gold" and the "I am scheduled for HIPEC" thread that Diane started. Do not know if these are possible treatments for you. Do not know what area you are currently getting your treatment. There are many sisters here all over the country on this site. You probably do want to get another opinion, and see what another doctor can offer you. Hope the Gemzar does work for you. In peace and caring.

maggie_wilson's picture
maggie_wilson
Posts: 616
Joined: Nov 2009

i'm sorry to hear what you've been going through. i, too, have upsc, as do a number of women on this site. linda, who has upsc, is going to philadelphia to be in a trial of a new drug, and there are trials all over the country. where are you? i haven't looked yet myself, but i think you can google clinical trials plus whatever universities, cancer research centers hospitals that are in your area. hopefully, however, gemzar will work. i would probably look for another doctor, if you really feel s/he has given up on you. i hope that's possible. just don't give up on yourself, ann. ( you might also ask your doctors if they have knowledge of any clinical trials in your area.)

thinking of you, and hoping for the best possible results for you. keep us posted.

sisterhood,
maggie

CW1162
Posts: 1
Joined: Sep 2010

Cathy,
I was diagnosed with 4B stage 2 Endometrial cancer in September 2009, Cancer has spread to the lungs and the lymph nodes. Had a complete hysterctomy in November and everything removed cancer was also in the ovaries and attached to the bladder. As of today I am on my 12th Carbo/Taxol treatment and cancer while not going away is staying stable. Have had highs and lows and was considering quitting treatments because I don't want stable I want a cure, told it is not curable because it is in the lungs. I have a daughter that doesn't graduate from High School until 2013 and I plan on being there.

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

I agree with Maggie's comments totally. I am a UPSC sister fighting recurrence too. You named all the chemos my doc mentioned. I hope the Gemzar is the golden ring for you. You are in my prayers.

Mary Ann

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

hello all , praying everyone is doing well, or better than yesterday and the day before. I have been counting the days till my oncologist visit next week, still at every 3 months, I have been cancer free since nov 1, 09 (last chemo) so almost 2 years. feeling great other than aches and pains from other things, like arthritis in foot, and torn something in shoulder, not rotator cuff but worse and waiting on a specialist to sew me back up, 3 month waiting.
thought Id tell everyone still kicking :)) got a great oncologist in grand rapids , wish I had him at the beginning of this wild ride. how is everyone else doing with stage 4 B ? this was the one thing I looked for when I went on line, is someone , ANYONE who has been cancer free with stage 4 B endometrial cancer.
lets get the roll call going, stage 4 b stand up and yell Im ALIVE and WELL!! cancer cant get me ! im a fighter!

Cathy K

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

You give hope to all the Stage 4 cancer babes out here! Seems the secret to surviving a long time is to get a LONG multi-year remission like yours, so that even if you eventually recur, you can go back on 1st line chemo drugs that are apt to thrust you once agan into ANOTHER long remission!

Unfortunately my cancer didn't take that optimal path, but I am certainly encouraged that YOURS has!!

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

hey Linda sorry to hear your cancer came back, my doc has said to me many times, if and that is a big IF it recurs he has a lot of tricks up his sleeve, he has one lady that has seen him for 10 years, of that 10 years she has had recurrence 4 times operate, chemo , radiation, a few months of yuck and then a few years of YEAA so that is encouraging. when my first doc (which i fired) kept reminding me I would be dead in 1 to 2 years guaranteed, and when the cancer comes back he has nothing to stop it, hmmmmm, and he has been a specialist for 20 years, not good, my doc has heard of the other doc all bad things, he acutally has a few patients now that were patients of my first doc :0
praying for ya, cancer free is in your future !
cathy k

Rewriter's picture
Rewriter
Posts: 496
Joined: Dec 2009

I'm so thrilled for you that you are cancer free. May it always be so!

Jill

kkstef's picture
kkstef
Posts: 706
Joined: May 2008

Cathy....what wonderful news! I am so happy to hear that you are doing so well. I well remember your earlier posts when you struggling with such a jerk of a doctor. SO great that you have found a smart, caring physician. That makes such a huge difference!

Keep dancing NED and shouting "I'M ALIVE AND WELL!"

Big Hugs!

Karen

Double Whammy's picture
Double Whammy
Posts: 2827
Joined: Jun 2010

to hear you're still doing well, Cathy. I'm so happy to hear you've found an oncologist with lots of tricks still up his sleeve. I always remember the words of my breast cancer medical oncologist. She says when people learn what she does for a living and seem sympathic, she tells them her job is joyful - she gets to actually cure people! I never viewed it from that perspective, always thought it would be such a difficult job to watch patients succumb and feel helpless. I'm sure the job satisfaction level amongst oncology docs is improving as treatment options are improving. So happy yours is one of the positive oncologists and you're doing well.

Suzanne

upsofloating's picture
upsofloating
Posts: 473
Joined: Dec 2009

Great news that you are still NED! Hope this continues for many years.
Annie

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

Glad you found the right docs. Mary Ann

nempark
Posts: 683
Joined: Apr 2010

Good to hear the good news. You go Kathy, for many many more healthy years. June

Grace4508
Posts: 1
Joined: Aug 2011

Hi Cathy you are a true inspiration I've been searching online for anyone who knows what I'm going through...I was diagnosed with stage 4 grade 3 uterine cancer last sept, could not go through with surgery however have had extensive radiation treatment & about to start my 3rd round of chemo, this is all very new to me as no one in my family has ever had cancer & I'm only 33 yrs old. I'm with you in defying statistics & living beyond the 5 yr mark :-) at the moment I've had a 5 wk break from my last treatment & am feeling bloated is this normal after such a break fr chemo??

maryv1119
Posts: 37
Joined: Jun 2011

Hi Cathy,

I have stage 3C grade 3. It's so great to hear you have been cancer free for 2 years now! My treatment ended May 2011 and my mind has been spinning wondering when/if my cancer will return.

It's wonderful to hear from other late stage cancer survivors.

Let's keep kickin'!

Rewriter's picture
Rewriter
Posts: 496
Joined: Dec 2009

Yes, keep kickin it! I'm so thrilled to hear when board members are doing well; and by sharing how well you are doing, you give us all hope. May it always be so.

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

just checking in , have been so busy and have not posted in a long time, I will be going for my 2 year appt. in 3 weeks and always have that thought in the back of my head, 95% chance of recurrance. thank God there is no recurrance as yet and praying I am one of the 5% :)
now I can say I know a few people with stage 4 b endometrial cancer, that have been cancer free for more than 2 years. yea yea yea . more people to add to that list soon !!!
now I would love to go to my first oncologist to tell him he needs to take the god from the middle of his name, as he said Id be dead in 1 to 2 years, but he probably would call the cops on me, he is that type of person , arrogant and rude,
thank GOD I have a fantastic doc now, so nice
well speak up , how many of us are out there now, kicking cancer.
please remind people to post , as when I first got diagnosed and was told by doc I would not live more than 2 years i went hunting for anyone who had lived more than 2 years cancer free. and seemed to find none. it is a real great feeling to know so many others are out there cancer free!!! and I am praying for all that are fighting cancer at this time ,
have a blessed night !!
cathy K

Sara Zipora's picture
Sara Zipora
Posts: 231
Joined: Sep 2010

I was thrilled for you and future of others like us by you 2nd anniversary!

I am Stage IV B Grade 3 uterine-Adenocarcinoma, today I got the results of blood tests and Ca 125 six months post Chemo. Still quite anaemic Hemo=10 but Ca 125= 7.7
iron shot etcs, pills and even transfusion don't make a difference even for a week!Ty
But I am working part time and did even a few goods days a week all during Chemo, husband, family and friends are great supports.

Wishing you continued success,

Sara

carolenk's picture
carolenk
Posts: 909
Joined: Feb 2011

Dear Sara

I want to tell you that unless you are SURE that you are iron deficient, you may be doing more harm than good with the iron shots & pills. Please have your family doctor check your ferritin level--that is the way to measure stored iron in the body. A high ferritin level is bad for cancer. Iron promotes cancer, too.

Many people are anemic after cancer therapy because of the effects the treatments have on the bone marrow. Do a Google search on the different types of anemia. There is one called "anemia of chronic disease"--it is more likely that THIS is the type of anemia that you have...taking iron is ONLY necessary for IRON-DEFICIENCY anemia. This explains why taking all that iron is doing you no good at all and is probably bad for you, too.

For Cathy K: thank you for coming back and posting your story! May you remain in a lovely long remission for many years to come.

Carolen

Sara Zipora's picture
Sara Zipora
Posts: 231
Joined: Sep 2010

Dear Carolen,
Took out blood test results to check, going to Onco tomorrow for two month check up, six months NE
S, Chemo ended Feb.
It says Iron =68.5 lowish but ok
Transferrin=198 which is a bit below lowest range
%Transferrin Saturation =24.6, lowish but within normal range.

Any more questions I should ask?
I'm also trying to get to see Hemotologist.

Thanks again for your input.

Sara

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