Lots of new ladies - let's have a roll call

EZLiving66

Welcome to all the new ladies

Welcome to all the new ladies!!! It's the pits to have to worry about cancer over Christmas.  A whole year has passed since I first posted this.  Over that year we've lost a few wonderful women,  a LOT more women have joined us but even more of us have made it another year!!!

I love you all and here's to another year of love and support!!

Love, 

Eldri 

I 

saltycandy13

thank you so much!

thank you for the welcome seeing I'm new at this.  Everyone here is so kind and understanding, I can't even explain how I appreciate it.  Had to visit my mother today and we talked about it a lot.  She's worried, and I am worried. She said she just wants me to have it over with.  Me too

Prairie

Roll Call

OK, my "formal" introduction. I'm Julie, live in Wisconsin, and was dx'd with UPSC 6/1/2015, stage 1 (grade 3, of course). Had a radical hysterectomy a few weeks later; robotic, straightforward. (The first time I'd ever been hospitalized, btw.) Six rounds of carbo/taxol (very rough going), along with four rounds of bracytherapy. Seven months clear until a maligant lymph node was found in my pelvis. Daily pelvic radiation for 28 rounds. Routine three month check found a couple more lymph nodes (this time nested between my spine, my vena cava and my aorta). Abdominal radiation, 29 rounds. Immediate follow-up showed a couple of new malignant lymph nodes around my neck. Decided to try doxil, but after 4 rounds (1/month) my CA125 went up significantly. PET scan shows many more affected lymph nodes, this time in my chest area. So I'm back to carboplatin (without the taxol to try to minimize the extreme side effects). Just finally had my second round of that, after a significant delay due to low blood counts. Now trying Neulasta (a WBC booster) so that I don't have to go 5 weeks between chemo visits.

So, in case you're trying to keep count: 12 rounds of some sort of chemo to date, 61 rounds of some sort of radiation. (Nope, I don't glow in the dark.)

I continue to work, moderate my activities as I need to, don't vaccum nearly as much as I need to. And aside from the hated bald phase, I mostly can pass for healthy. I've been through the emotional yo-yos, am still wiling to fight this disease, and haven't quit buying nice new socks.

Glad to have this forum so that I can read the journeys of others who are struggling, managing, coping, learning. Thanks for sharing your stories.

j.

 

evolo58

I'm Fran.

I'm Fran. Clinically diagonsed on 11/28. UPSC Stage 4B. (Probable omentum/pertioneal involvement, a nodule on my lung (he did not seem sure what that one was ... he mentioned it might be cancer, but did not list it in his final findings) and an "indeterminate" nodule on my adrenal gland that he told my PCP he was not worried about, but then listed it as "possbile metastatis" on the report. Lots of other odd things about that scan. I think you can tell how I and the PCP feel about THAT scan.

But ... UPSC and all that. While the pathology suggests a mixed serous (I also have a great case of endometrial hyperplasia, complete with 17mm lining, which isn't very common with UPSC), I still have this pest in my body. Even if the UPSC is only 5% of the tumor, it's still UPSC.

Currently undergoing neoadjuvant therapy. Three chemos prior to surgery (hopefully ... I want my bloomin' uterus OUT already!), A CT scan to see what's what, then after (hopefully) surgery, three more sessions of chemo. Lucky me got the gloom and doom surgeon who is apparently an excellent one, but has the bedside manner of a goat. No. That's not accurate, and an insult to goats. Sorry, billies and nannies.

Anyway, 2nd Chemo tomorrow. Day after Christmas. Wish me luck with the second CA-125 test, please. I'm kind of worried about that one, since I still have some sizeable fibroids, and I know that can skew the results. Last reading was 121. Currently considering going with my second opinion. At least I don't hear turkey vultures circling outside the door with that doctor. (Sorry, turkey vultures.)

One thing that is utterly fantastic is seeing that most of you ladies are still around after a year! It's really encouraging. 

MrsBerry

I have typed this up several

I have typed this up several times, but just could bring myself to post....denial, I guess. But it is time to admit I am in this club. Hysteroscopy/D&C for postmenopausal spotting, on 12/12/17 showed endometrioid carcinoma, grade 1. Doc was as shocked as I am, I have no risk factors other than my 59 years of age. I will have the hysterectomy on 1/11, robotic assist, so do not know stage yet. I am fortunate to be able to go to Johns Hopkins hospital and doctors.

On the day I met with the oncologist, my husband received a Dx of prostate cancer, a moderately aggressive form. He meets with oncologist next week. I know we are in for a difficult time ahead, but we are a strong team.

I am in awe of all the amazing women on this board, and I thank you all for sharing your stories and info. I hate that we all are dealing with this, but it is helpful to know we are not alone in the fight.  Hugs and strength to all... MrsB

evolo58

This board is an inspiration

Prayers for the both of you as you make your ways through all of this. 

MrsBerry

evolo58 said:

This board is an inspiration

Prayers for the both of you as you make your ways through all of this. 

Prayers for you, too, evolo.

Prayers for you, too, evolo. You are in my thoughts this week, I hope your chemo and testing go well.

evolo58

Still waiting for the C-125s.

Still waiting for the C-125s. My bloodwork looked pretty good. Platelets a little lower than normal, but barely. The nurse did not seem alarmed. She was a WHOLE lot more positive and upbeat than that blinkin' surgeon, though. 

Is it normal for C-125s to take a little longer? The delay is concerning me. The last bunch of tests arrived at the same time, but in all fairness, they arrived two weeks after I got the bloodwork, so it's possible the C-125s were part of the delay as well.

I'm slightly more nauseous than with the previous chemo, but it usually passes in about ten minutes. Not upchuck-nauseous ... yet. But then again, I'm on those magical three days of the anti-nausea pills and the steriods. Let's see how I am once the training wheels come off. I am approved to take the anti-nausea pills after that period, though, if things really get rough to the point I can't eat or keep anything down.

dgrdalton

CA-125

The lab closest to my home has to send off the CA-125, so it will take longer if that is the case with your lab.

Darla's Mom

Roll Call

I am Lisa. I just turned 53 years old. I live in southern NH. 

September - 2017 - I was premenopausal. My symptoms were vaginal hemoraging. My menstral cycles were like clockwork all of my life. I never had children and had led a fairly healthy uneventful life up until this time.

Went to the local emergency room who sent me for a vaginal ultrasound. Revealed a large tumor 12cm. Got a first class amublance ride to Boston BIDMS where they prescribed hormones to stop the bleeding.  

My OB/GYN was convinced that it was fibroids. Endometrial biopsy on  showed poorly differentiated grade 3 endometrioid endometrial  adenocarcinoma. 

Back to BIDMS where I was introduced to my surgical oncologist. New dr, new baseline. Surgery was scheduled for October 2017

October - 2017 - radical abdominal hysterectomy, bilateral salpingo-oophorectomy, bilateral pelvic and periaortic lymph node dissection, omentectomy. 

Final pathology revealed high grade serous carcinoma of likely fallopian tube origin. However, after discussion at Tumor Board, it was concluded that the primary is more likely uterine.

Final diagnosis- stage IVB high grade serous adenocarcinoma of "likely" uterine origin.

Chemotherapy: Carboplatin / Paclitaxel 6 rounds 3 weeks apart. No radiation was recommended.

I completed round #1 with little side effects other than neuropathy. Oncologist believes that the pain may be myaliga not neuropathy. Round #2 is next week.

We are cold capping using the penguin cold caps to preserve my hair. So far so good. We are at day 14. I have minimal shedding so far.

ckdgedmom

Darla's Mom said:

Roll Call

I am Lisa. I just turned 53 years old. I live in southern NH. 

September - 2017 - I was premenopausal. My symptoms were vaginal hemoraging. My menstral cycles were like clockwork all of my life. I never had children and had led a fairly healthy uneventful life up until this time.

Went to the local emergency room who sent me for a vaginal ultrasound. Revealed a large tumor 12cm. Got a first class amublance ride to Boston BIDMS where they prescribed hormones to stop the bleeding.  

My OB/GYN was convinced that it was fibroids. Endometrial biopsy on  showed poorly differentiated grade 3 endometrioid endometrial  adenocarcinoma. 

Back to BIDMS where I was introduced to my surgical oncologist. New dr, new baseline. Surgery was scheduled for October 2017

October - 2017 - radical abdominal hysterectomy, bilateral salpingo-oophorectomy, bilateral pelvic and periaortic lymph node dissection, omentectomy. 

Final pathology revealed high grade serous carcinoma of likely fallopian tube origin. However, after discussion at Tumor Board, it was concluded that the primary is more likely uterine.

Final diagnosis- stage IVB high grade serous adenocarcinoma of "likely" uterine origin.

Chemotherapy: Carboplatin / Paclitaxel 6 rounds 3 weeks apart. No radiation was recommended.

I completed round #1 with little side effects other than neuropathy. Oncologist believes that the pain may be myaliga not neuropathy. Round #2 is next week.

We are cold capping using the penguin cold caps to preserve my hair. So far so good. We are at day 14. I have minimal shedding so far.

I cold ---Darla's Mom

your story is very similar to mine...I'm 53...found the cancer after incredibly heavy bleeding (thought it was fibroids). My periods were never normal even after having kids. I have stage 4b UPSC. I had my hysterectomy November 28 2016 and carbo/taxol chemo from Dec-April. I had 6 rounds followed by 25 pelvic radiation therapies plus 3 brachy and then 30 rounds to two cancerous lymph glands in my neck.

My profile photo was taken 3 weeks ago...I finished chemo April 7...so that is my hair (8 months later)...I've cut about 6 inches off since chemo but that is all my hair---no extensions. Cold capping works but oh it is cold! I had more shedding as each round happened but only maybe lost 30% of my hair (and some of that may have happened with menopause). I only washed my hair once a week, slept on a silk pillowcase, used "hair screws" to keep my hair in a bun (even when doing spin class or yoga), used a natural shampoo, no heat appliances, Wet brush, and took prenatal vitamins, silica and biotin supplements...I always put a little hair oil on my hair before putting on the caps to keep it healthy and soft while wearing the caps. I have no bald spots and only lost a bit of hair at my temples in the hairline because the caps slid back. I have a hot head so I found I had to put the cap I was getting ready to put on straight into the dry ice (in no container---my capping system had each cap in a little plastic box) to make sure it was good and frozen before putting it on...

my oncology pharmacologist suggested taking L-glutamine supplements to help prevent the neuropathy (other friends also found it worked for them). 3x per day. b6 once a day. Omega 3 capsules (2) twice a day to get in 2000 mg. You might check with your doctor and see if it's ok to try...I got my L-glutamine on Amazon. I took pills but there is also a flavorless powder you can add to a drink.

evolo58

It's times like these when I

It's times like these when I realize that doctors might have done us a disservice by pooh-poohing abnormal bleeding more often back in the day. I had the Periods from Hades right before menopause ... I couldn't even got out for one hour before going through a pad AND a tampon. The biopsy showed I was negative for endo cancer, but now I wonder .... if the doctor advised me to get a hysterctomy then, would things be different now? Did the doctor do the biopsy correctly, and should the diagnosis have been verified with a D&C? Now, doctors apparently pay much more attention to abnormal bleeding like mine.

But I remind myself that there would have been no guarantee this wouldn't have happened. The ovaires would probably have been left in. So what-ifs are pretty much useless.

As for consulting with a doctor, I concur. Apparently, my current surgeon does NOT want me to increase my Omega 3. I'm taking a fairly low dose for my Graves. Takiing 2000 mg apparently can affect me adversely. She advised me to increase it after the second three chemo sessions, when I was done with treatment. I wouldn't be surprised, though, if another doctor advised otherwise. I've been seeing that a couple of times lately. Nothing like a wee bit more confusion! 

ckdgedmom

evolo58 said:

It's times like these when I

It's times like these when I realize that doctors might have done us a disservice by pooh-poohing abnormal bleeding more often back in the day. I had the Periods from Hades right before menopause ... I couldn't even got out for one hour before going through a pad AND a tampon. The biopsy showed I was negative for endo cancer, but now I wonder .... if the doctor advised me to get a hysterctomy then, would things be different now? Did the doctor do the biopsy correctly, and should the diagnosis have been verified with a D&C? Now, doctors apparently pay much more attention to abnormal bleeding like mine.

But I remind myself that there would have been no guarantee this wouldn't have happened. The ovaires would probably have been left in. So what-ifs are pretty much useless.

As for consulting with a doctor, I concur. Apparently, my current surgeon does NOT want me to increase my Omega 3. I'm taking a fairly low dose for my Graves. Takiing 2000 mg apparently can affect me adversely. She advised me to increase it after the second three chemo sessions, when I was done with treatment. I wouldn't be surprised, though, if another doctor advised otherwise. I've been seeing that a couple of times lately. Nothing like a wee bit more confusion! 

Omega...for evolo

My surgeon had me stop the Omega 3 days prior to surgery so it's wise you are on a low dose and may want to stop a few days before...

did you ever get your CA125 results? Mine usually take 2 days but I am at a big hospital in the Texas Med Center so things move fast...

evolo58

I posted about it ...

I posted about it ... it probably got buried. 43.7 .... way down from 121.6. Hopefully the final pre-op C-125 will dip below that 35 mark (Still allowing for fibroids here), and the next CT scan (which I HOPE will be read by a different tech who can write better reports) will look favorable for surgery. Fingers crossed. I want this thing OUT of me! The test results took a little over 2 days for me, so I didn't have to wait that long. 

ckdgedmom

evolo58 said:

I posted about it ...

I posted about it ... it probably got buried. 43.7 .... way down from 121.6. Hopefully the final pre-op C-125 will dip below that 35 mark (Still allowing for fibroids here), and the next CT scan (which I HOPE will be read by a different tech who can write better reports) will look favorable for surgery. Fingers crossed. I want this thing OUT of me! The test results took a little over 2 days for me, so I didn't have to wait that long. 

Yay evolo

that's great! Mine was a high of 673...then in the 400's before surgery and then dropped to 25 after surgery and then to 12 after chemo...but then it came up again (cancerous lymph glands in the neck) but now it is back to 13...

i hope you get some answers soon! I totally get you wanting it out...I felt the same way! The last thing I yelled before they put me under (and yes I yelled so my surgeon could hear me) was : FIX ME!

prayers for you

stinnettknox

Roll Call

Hi everyone!   My name is Mitzi from Knoxville TN.   I am fairly new here also.   In Sept. 2017 I had a small amount of bleeding when I got up in the morning.   I went in to work and didn;t think anything else about it.   2 weeks later, it happened again so Imade an appointment with my GYN.   He scheduled a D & C for Nov. 10th and all he found was a polyp.   Unfortunately, the pathology came back as adenocarcinmoa.   HE referred me to a gyn/onc for a hysterectomy.

On Decemebr 10th I had arobotic total hysterectomy with bilateral salpingo-oopherectmy and lymoh nodes removed.   He also fixed a small hernia from where my uterus had pushed it way into my abdominal wall and also a large fatty lipoma.   I was staged at endometriod adenocarcinoma STAGE 1a GRADE 1 and 2.   I am still recovering from the hysterectomy, but getting better.   I had a terrible time with constipation at first so now I take a daily stool softener which is helping.   I have bladder spasms at the end of voiding which concerns me, but there is no infection.   I was numb on the left side of my lower torso and left leg, but that is going away now too.   I still have puling pain deep inside, which I hope is normal.   Overall, I feel pretty good.   I work for a school system, so I am off for Christmas Break and I still have another week and a half to recover.    I dont go back to the oncologist until the end of Jan. for another checkup.   As of now, he has said that the surgery is all that I should need for now.   Here's hoping!!!!!    Also, I had Hodgkins LYmphoma back in 1997.

 

Kaleena

Roll Call

Hello, I am Kathy from Pittsburgh, PA 

I had a "routine" hysterectomy in September of 2005.   When I went back for my followup I was advised that they had found cancer in my uterus, cervix and left ovary.  I was diagnosed at age 45 in September 2005 with Stage 3a, Grade 2 Endometrial Adenocarcinomo.  However, they treated it as ovarian cancer as they could not determine what or where the original cancer came from.  They thought it could also be mixed mulleran but decided on endometrial adenocarcinoma.  I took Gemzar for 6 months and then had 3 HDR brachytherapy.  I had an allergic reation to Taxol, that is why they changed it to Gemzar.  I did have a port in which they left in for over 6 years.

I had a recurrence in 2010 and had surgery at the Cleveland Clinic.   The mass which was biopsied and found to be positive once it was removed was negative.  However, they did find a lymph node with positive cells.   However, I did not do any treatment.   Just a "wait and see" approach.

in 2014, I ended up with hydroureternephrosis and had to have a ureter stent placed.   Every 3 months it had to be changed.   Therefore, I met with a oncologist/uroglist and had a ureter relmplantment surgery in December 2015.

I was also hospitalized in October of 2015 for pancreatitis.

In March of 2016 I had my gallbladder removed.

In 2017, I have been in pain and I do have several soft tissue masses which have been biopsied negative but seems to be causing me pain and which they are continuing to watch through scans and testing.

I've been a member here since 2009.

My best to all!  Hugs!

Kathy