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I need any Grade 3, Stage 4 Endometrial cancer survivors out there to support my sister

crystalblue1208's picture
crystalblue1208
Posts: 38
Joined: Apr 2012

Eight weeks ago my sister was told she had grade3 1A Endometrial cancer but now the cancer has spread and turned our condition to Stage 4B. She is only 31 years old and devastating and keeps wondering how long she could still live and how to deal with her pelvic pain and chemo..etc. If you are one of the survivors, could you post or email your stories so I could show and use your example to encourage my sister?

Thank you so much!

debrajo's picture
debrajo
Posts: 792
Joined: Sep 2011

Hi! I also have UPSC 1A-grade3. I was 57 at diagnoses and had six rounds of taxol and carboplatin and five internal radiation after a complete hysterectomy. No lymph nodes taken, but everything else was negative including pelvic wash. Have not had any symptoms you talk about, but did loose all my hair(no big deal) and the severe hip,leg, and ankle pain from day three to day six. No loss of appetite, actually gained 30 pounds. I have been NED(NO EVIDENCE of DIEASE) as of May 21, 2012 for two years! There are a lot of us living quite well for long periods of time and then starting over again. As Jazzy1 says cancer is a word, not a sentence! Best, Debrajo

crystalblue1208's picture
crystalblue1208
Posts: 38
Joined: Apr 2012

Hi Peggy Davis,

My sister had her 2nd chemo last week. Her hair started to fall 2 weeks after the 1st chemo and she has expereinced almost every side effect that could possibly happen. The good thing is usually the symptoms will be relieved 10 days after each chemo session so she could have a least an "easy" week to get herself ready before her next chemo session.

pakb56
Posts: 141
Joined: Jan 2012

I was diagnosed with endometrial cancer with involvement in one falopian tube and one lymph node in December. Overcoming the WTF shock took me a couple of weeks. I soon found that people tell you you are in my thoughts in prayers was a life saver to me, pulling me out of some dark places in my mind. I believe so much in that power. After being involved in a car accident about 2 weeks ago, a ct scan showed I had 2 brain tumors. My healthcare team was so fabulous and I thank the Lord repeatedly for putting me in their capable hands. The tumors were removed about 10 days ago and I really feel great and started back to work yesterday.

This road we travel is a difficult one but must be traveled. I have to believe the Lord has a plan for me and whatever that may be I try to focus on the good and keep the bad at bay. I know, easier said than done and I amaze myself somedays I can do it!

The support you will receive on this board is awesome. These women have become the sisters of my heart and with them, I will never walk alone. I read a post a while back that said...I have cancer....cancer DOES NOT HAVE ME!

Take care and give your sister my best wishes.

Pat

crystalblue1208's picture
crystalblue1208
Posts: 38
Joined: Apr 2012

Hi Pat,

Thanks for sharing your story with us. My sister has been on this crazy roller coaster both physically and emotionally ever since she learned her condition has changed from stage 1A to 4B. Her 3rd Chemo was cancelled yesterday because she had MRSA in her bloodstream. They had to remove her port and put the piccline back in and then make her on antibiotics for 2 more weeks......We are very discouraged when seeing those additional complications she is suffering on top of the evil disease. Your story/prayer really give us strength to move on.

Ro10's picture
Ro10
Posts: 1473
Joined: Jan 2009

Dealing with cancer treatments is difficult enough, but having MRSA is even tougher. I hope she gets the infection cleared up soon. I hope you both are able to take it one day at a time. You both remain in my prayers. In peace and caring.

jserbe0805
Posts: 4
Joined: Aug 2012

crystalblue, I am new to this site and I am so sorry to hear about your sister. I am here for my sister also...she was diagnosed in April also with stage 4 clear cell uterine cancer with mets to liver and lungs. I had asked about surgery on another post but has your sister had surgery? I read a lot about surgery being the first line of attack but my sister has not had surgery. The carboplatin/taxotere has not stopped the advance of the tumors so they are putting her on Alimta, which starts on Tues. I know MRSA can be tricky to deal with. Mom was in a nursing home and ended up with MRSA and seems like it took forever for it to be cleared up. :-( Hopefully your sister can rebound from it quickly and get back to her treatments.

crystalblue1208's picture
crystalblue1208
Posts: 38
Joined: Apr 2012

My sister did have a surgery to remove her uterus in February this year. It was staged 1A Grade 3 but then 7 weeks later the surgery it mets to liver and lungs. Doctor said at the point Chemo is the 1st line treatment. The carboplatin/taxotere did not stop the advance of the tumors for my sister either so she has switched to adriamycin/cisplatin/taxol. I hope you sister will get good response with Alimta. May I know which state you and your sister live and which clinic your sister receives her treatment at?
We're in DC.

jserbe0805
Posts: 4
Joined: Aug 2012

My sister lives in the Frederickburg area. She had been referred to a gyno oncologist who said 3-4 rounds of chemo then surgery, but the med oncologist wants to continue with chemo. We were just all so surprised that it was so advanced at time of diagnosis. Seeing all the women here who have survived many years into treatment is so encouraging!

Ange1
Posts: 1
Joined: Nov 2012

My Mom (60 yrs of age) was just diagnosed November 23, 2012 (the day after Thanksgiving) that she has Grade 3 Edometrial adenocarcinoma. She had a sonogram and biopsy that confirmed this diagnosis with a normal pap smear. I just found a doctor and I hope I picked the right person. Her first appointment with an oncologist is Thursday, December 6th. It's the hardest thing to go through since we just buried my Dad two years ago due to a stroke. We cared for him for year at home as he suffered every day, thanking me for taking care of him and now hearing my Mom's news is breaking my heart. I joined this forum for support. Don't know what to expect from this evil illness. If anyone has any information to share to let me know what I should do to hurry up the process of surgery or whatever treatment she might need. Is there any additional testing that the oncologist would make her have before treatment begins?

I thank you all for sharing your stories and I pray that each one of your loved ones get better. May God Bless You All!

debrajo's picture
debrajo
Posts: 792
Joined: Sep 2011

Sorry for you and your mom. About the only suggestion I would make at this point is her dr. should be a gyn/onc and not just a onc. Dr.s do make a difference. If she is in pretty good health otherwise she should do fine on the chemo and radiation. Try to stay calm, some of the smarter ladies will be by soon to help you with things to do for this particular cancer. Best, debrajo

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

I suggest that you get tissue assay (functional profile) of biopsied tissue. Some docs do this routinely, others don't. Check with your onc. This will help with treatment decisions along the way.

Hang in there and take it one day at a time.

Hugs, Mary Ann

crystalblue1208's picture
crystalblue1208
Posts: 38
Joined: Apr 2012

I am sorry we had to meet under this circumstance but I am glad you've found this wonderful site. I actually learned a lot from reading many threads other ladies have posted and wished I (or my sister) could find this place earlier.

I don't have any to suggest in your mother's case as my sister found her cancer at a fairly young age and chose not to have the surgery right away but I am sure other ladies will provide you their inputs/ideas. Good luck!

ssj6milton
Posts: 1
Joined: Jan 2014

I'm 5 years and 2 months in remission with stage 4B Uterine cancer.  My surgeon and family have been amazing and key to my recovery and survival. I had a full hysterectomy and 30 lymph nodes removed. After surgery my treatment went as follows... 3 months of chemo, 6 weeks of external radiation, 3 treatments of internal radiation (my surgeon said if the cancer returns it would show up in the vaginal area) and 12 months of once weekly chemo. I'm 56 yrs old, you are young and have a long life ahead of you one day at a time! Stay positive!

Goldheart
Posts: 36
Joined: Sep 2013

Cann I ask who is your doctor and whcih hospoital do yo go?

shellybird
Posts: 2
Joined: Aug 2014

I recently was diagnosed with cancer. Went through surgeries andnow treatments. I have stage 3 uterine cancer that got out of the uterus. we decided as a group, to just do radiation as it is not known if the cancer spread. Time will tell. I live each day as a gift.

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