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Endometrial - stage 3c

Jewels0829
Posts: 2
Joined: Jul 2003

I've had a hysterectomy and will soon start radiation followed by chemotherapy. Is there anyone out there that is in the similiar stage of cancer that I am that would like to talk with me?

hojo
Posts: 7
Joined: Jan 2002

hi my name is ronnie and i am a survivor of stage 3 endometrial cancer, diagnosed 12/99 at 47,,,,i also had radiation and 6mos of chemo...and today i am great, healthy and happy to be replying to your note ...let me know how i can help....

Jewels0829
Posts: 2
Joined: Jul 2003

hi Ronnie...thank you for replying to my message. I don't find alot of people that have been in my shoes before. So tell me what symptoms you had with the radiation? Also I'm having Cisplatin and Doxorubicin for chemo. Did you have similiar medicines and what side effects did you have??? Julie

hojo
Posts: 7
Joined: Jan 2002

hi julie how have you been? i had no ill effects from the radiation, slight diarrhea after all the treatments were done..the chemo was harder, nausea and a metallic taste in my mouth..i was on taxol and cisplatin...but i got through it and pray that i stay healthy...smile everyday:) let me know how you are doing..my email is bestpupsx2@yahoo.com.....i would love to keep in touch with you..i also did not know alot of gals with endometrial ca....be well ronnie

annabel_heath
Posts: 6
Joined: Oct 2004

annabel heath
had the same as you . did you have CA 125 taken
my Email is annabel_heath@hotmail.com

millieb
Posts: 4
Joined: Aug 2005

hojo,
I was recently diagnosed with stage IIIC endometrial cancer (confined to uterus but in the inguinal lymph nodes) and had surgery, radiation with cisplatin, and I am now starting 3 cycles of chemotherapy with carbo/taxol. I am so happy to hear that you are doing well. As I get closer to the completion of my therapy, the more I get scared about those follow-up apppointments. I want to live my life and not be in fear, but I don't know how I will manage the next few years "looking over my shoulder" and tracking CA125 levels and CT scans. How did you do it? What helped you cope when the treatment was all done?
Thanks for your help and take care.
-millie

Dee K
Posts: 1
Joined: May 2013

My sister sent this site to me since I have just been diagnosed with "Peritoneal - Ovarian cancer steming from Endometrial cancer along with Rectal and Lymphatic cancer Stage 3 between B & C"  My sister is undergoing her own treatment so she has been trying to explain a few things to me as well as let me know a little of what to expect for at least the next six months.  I go this coming Tuesday for what is called a Chemo Education class then hopefully I will be able to get this started within a few more weeks.  Right now I am still tryig to heal from surgery where they had to remove a tumor, both ovaries, both falopian tubes part of my upper vagina, my appendix and part of the pelvic wall.  I am told I will have 6 treatments of chemo with TAXOL/CARBOPLATIN and then when strong enough some radiation to the pelvic area.  Doesn't sound like much fun!

Sorry got a little off track, could not figure out how to post so I just decided to reply to someone elses post.  Any clues for me?

Thanks a millioin,

Dee

ccfighter
Posts: 366
Joined: Jan 2012

Hi Dee,

There is a separate board for uterine cancer.  Try posting over there too.  I am sorry for your diagnosis.  I went through the same treatments you are going to have but for cervical cancer.  It a rough ride but you will be fine.  Stay hydrated, rest when you need to, believe in your recovery.  Your scalp will be sore as your hair comes out but then it is fine.  Antinausa meds are a real help.  I never got sick.  Fatigue will last five days or so after infusion but then improves.  Let me know if you have any more questions.

Simchah
Posts: 2
Joined: Jul 2003

I had only radiation (25 external, 3 brachytherapy). Main side effects are diarrhea, MOOD SWINGS, fatigue and depression. I finished my last treatment on Aug 3rd, and am just now feeling like my 'normal' self again. It is exhausting, but you will get through it. Just remember, all the side effects will disappear after treatment is finished.
Simchah

aminmi
Posts: 8
Joined: Oct 2003

I had a hysterectomy in Aug. of 2002, followed by 6 wks. of external radiation, then 24 hrs. of internal radiation and then 5 cycles of chemo with the same drugs you're getting. I was sick from Day 1 of radiation, but did better with chemo although my blood levels were severely affected. I had to have transfusions several times. I, too, do not know of many people with endometrial cancer and even fewer who had to have treatment beyond surgery. It's nice to talk to others who have been there.

Monicabirdsong
Posts: 2
Joined: Dec 2003

My endometrial cancer has recurred after 3 years cancer-free. I had a radical hysterectomy but refused against medical advice chemo and radiation. I realize my mistake and am now preparing to treat it more aggressively.

Ladyebc
Posts: 9
Joined: Nov 2003

looking for anyone with stage 3c papillary serous type

annabel_heath
Posts: 6
Joined: Oct 2004

annabel_heath
dear ladyebc
my subject is under uterus cancer:
What chemo Uterus(clear+serous)?

.
In august 2003 I was fainting from loss of blood (long periods) . Had surgery to remove Uterus cancer (clear cell and serous cell type carcinoma)stage 2 or 3(invaded cervix) by full hysterectomy. I had 3 lots of chemo carboplatin/epirubisin, then 6 weeks radiation treatment followed by 3 more lots of carboplatin/epirubisin . CA 125 was 50 after surgery decreased to 30 after first chemo then went up to 58 before radiation treatment. After radiation treatment took it down to 14. However final 3 lots of chemo (chemoscarboplatin/epirubisin) increased to 140. I had to have a second surgery to remove 2cm secondary under left hip bone and removal of omentum in june 2004. My CA 125 a little over 2 months ago was back at 80. I am afraid to have another CA 125 test as I am told by doctors that it will probably go up again and that the cancer although not visible at macro level is still there at the molecular level.Doctors say it is just a matter of time(i.e. months) before it shows up on CT scan when CA 125 increases.
CA 125 (cancer antigen 125) should be less than 30. Doctors do not recommend any further treatment until cancer returns on CT scan. Anyone know what other chemo I should try to lower my CA 125. With ovarian cancer with clear and serous cell type same carboplatin/epirubisin and taxol combination is used and usually the CA 125 goes down from hundreds to less than 10. However no successful scientific studies have shown carboplatin/epirubisin on clear and serous cell Uterus cancer is successful.Doctors say not many or any studies have been done on this type of cancer as very rare(less 5% of women who get uterus cancer have either the clear or serous cell type, both very aggressive cancers). Most common Uterus cancer(different cell types to mine) has a survival of 80% or more over 5 year period. However my cell type (clear + serous) has a survival rate over 5 years of less than 5% as my cancer is very aggressive. Does anyone know of other chemo I can try? Maybe Taxol? I am only 46 years old with three children aged 18, 16 and 15 and a loving husband that need me alive

My Email is: annabel_heath@hotmail.com

I also have a web page under our cancer survivor network.

Ladyebc,
Your chemo seemed to work as I had the same as you carboplatin/epirubisin but it did not work
as cancer returned and my CA 125 increased to 80
2mths ago. Normal level is 30. What is your Ca 125 and did it decrease with chemo. Also I had clear cell in addition to serous cell.
Looking forward to hearing from you. Women with our type of Uterus cancer are rare only 5% of all
women with uterus cancer get the very aggressive clear or serous cell types.
Regards and best wishes,

Annabel Heath Canberra Australia

ronmybaby
Posts: 20
Joined: Sep 2012

I'm then one of those 5%.  My cancer did start up there in the uterus with a tumor on the vaginal cuff.  So the doctor cut out the tumor gave me a radical hysterectomy along with it.  But could not or did not cut out the cancer on the wall of the rectrum so I wouldn't have a bag the rest of my life.  Well the cancer then moved fast.  In only a couple months another grapefruit size tumor formed again in the uterus/vaginal area.  So now they put me on carbo/taxol heavy (two years of that).  The cancer moved to the spine, the liver the lymph nodes.  So I guess I am one of those unlucky 5%. 

Today started up this week on Topotecan drug once a week for 3 weeks, off one week then back on it.  The cancer seems to move to "new" spots in me for some reason.  Even with all this poison they are putting in me.  I wonder if the types of food I eat "help" the cancer?  I go online and try to learn as much as I can. 

 

Kitty

 

Monicabirdsong
Posts: 2
Joined: Dec 2003

Please learn from my experience. I had a radical hysterectomy 3 years ago but refused against medical advice chemo and radiation and now just learned my cancer returned. Although they found no spread at the time of my hysterectomy, the cancer has returned. Adjuvent therapy is very important to ensure survivorship. Now I am getting the care I should have gotten 3 years ago. I have to stay in the present and move forward.

meshelly4
Posts: 1
Joined: Sep 2013

My mother had her first chemotherapy on Wednesday the 28th carbo/taxol. My mother is 69 yrs old and is very active...it is breaking me up to see her in pain and laid up. It has been 4 days since chemo and now her 2nd day of muscle pain from the hips down to her ankles. What can I give her for the pain? Does it go away or is it just going to get worse? Please help...Thank you

NoTimeForCancer
Posts: 412
Joined: Mar 2013

Meshelly4, sounds exactly what happened after my first round of chemo.  Chemo nurse had warned that a few days after chemo I could get "flu-like symptons".  Well, joint pain and body aches are flu-like symptons and it hit me like a ton of bricks! 

I had my first chemo on a Thursday and on Saturday I was running around the house like nothing, I had thrown a load of laundry in to the washer and BOOM!!!!  My friend called to say he was coming over to trim the shrubs outside my house and told him I couldn't move.  It took a quite awhile for it to go away, and while it was a fear for all subsequent treatments, I found it was never as bad as the first time again. 

To me, it is like your body reacting to these drugs saying  - WOAH!!!  WHAT IS THIS?!  and then the next time it says, "Oh yeah, we have seen this before". 

I would also invite you to come over to the UTERINE cancer board.  Lots of sisters over there who will help you and your mom through this journey. 

ConnieSW's picture
ConnieSW
Posts: 545
Joined: Jun 2012

Yes, Meshelly, do join us on the uterine board.  My experience was the same as NTFC's.  The muscle ache/pain in my legs was worst the first time.  I did learn to anticipate it on the Sat following my Wed chemo and started taking Tylenol to control it before it got ahold.  Just be sure to stay under the recommended dose for geriatrics (I was 65) per 24 hr period.  We don't need to compromise our livers.

ronmybaby
Posts: 20
Joined: Sep 2012

How did the Chemo Education Class go?  I saw your post.  I also took both those two drugs carbo/taxol in 2012 - 6 treatments (3 doses each time).  Then again the cancer came back but not just in the female area but into my lymph nodes, liver so I had same treatment done in 2013.  Well this cancer is apparently fast growing.  Now in 2014 I just started up on Topeckea once a week for 3 weeks.  All have been IV and yes I had everything removed in the female area.  No radiation.  The cancer is all over in different areas so he won't do radiation.  That's for cancer confined to a specific spot which I don't have.

 

Tell me what you learned from your class.  I think alot about what foods and vitamins and minerals that can actually HELP the cancer and what I need to fight the cancer!!  Doctors don't want to really push that they only push drugs.  So I use the internet alot to read.  I did buy a juicer.  I don't know though if the juice is helping or hurting.  I don't want to spend all this money on chemo and shoot myself in the foot. LOL.

 

let me know.   God Bless You.   Kitty

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