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Research study on UPSC

Abbycat2's picture
Abbycat2
Posts: 641
Joined: Feb 2014

I have been continuing to read about uterine papillary serous cancer and found this research study helpful in understanding what my prognosis is based on my stage.  Of course, this is statistics and I am well aware that remaining disease free is a matter of chance.  Nevertheless, the article gave me some hope for my future.  When I was first diagnosed, I really thought that I had no chance of surviving this cancer.  I now know that that is not true.  I have found some interesting information on the ASCO site, including how aspirin and statins may reduce uterine cancer recurrence.  If you are interested, you can review the research papers by year and can look up specific uterine cancers, such as clear cell or sarcoma. 

http://meetinglibrary.asco.org/content/100898-114

Wishing you all the very best,

Cathy

debrajo's picture
debrajo
Posts: 1095
Joined: Sep 2011

Thanks so much Cathy!  If I read it right, my 1a/1b, with  PCHR {platium based taxol/carbo, and 5 bryanchtheropy}gives me a probable 5 year rate of 94 % survival rate.  Sounds better then the 30/70 maybe I got at first.  I am comming up on 4 1/2 years in Nov.  Did I maybe understand it wrong, do you think?  Thanks again, living in the moment, Debrajo

Abbycat2's picture
Abbycat2
Posts: 641
Joined: Feb 2014

Yes, the overall survival for stage 1a/1b is 94% for women who received the platinum based chemo and brachytherapy.  I think this means that some of those 6% died from causes other than UPSC.  These statistics suggest that you have a low risk of recurrence, as the 5 year disease free survival in this study was 82%. I think you are in the clear, thank goodness!  

Take care,

Cathy

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

this study was from 2012.  I feel they have made progress with UPSC since then.  It  has been 6 years this month since I first  heard those dreaded words" you have Cancer".  It was 5 years in January since I learned I had UPSC.  I have not been " disease free" since my diagnosis.  But I feel I have had good quality of life even with the recurrences.  I know I am one of the lucky  " survivors" diagnosed with stage 3-C.   I hope those statistics improve with the next study they do.  Thanks for sharing.

joannewtta's picture
joannewtta
Posts: 43
Joined: Jul 2014

I was diagnosed with UPSC in June 2013. DiVinchi surgery in July staged at a 3C2 I believe. Followed with 18 carbo and taxol, then 4 bracytherapies. I read about a 36% survival rate. Tomorrow is my third 3month checkup and I want to make sure my oncologist does a CA125. It was 39 after surgery and has continued to go down. In July it was 11. I just turned 69, was average age of UPSC at diagnosis. I feel great but have to admit I get nervous just before a checkup. Ro10 I read and appreciate all your posts along with all the other incredible women posting here. My husband is great but I don't want to talk about being nervous; it just makes him worry more. I want an honest answer from my Dr about survival chances. RO, WHEN WAS YOUR FIRST RECURRANCE?

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

my first recurrence was 18 months after I finished my sandwich treatment of chemo  and radiation.  No symptoms, just CAT scan showing enlarged lymph nodes.  CA -125 was 1700. When I started chemo the second time.  My second recurrence was only 7 months after I finished 3 rounds of taxol/Carbo and 4 rounds of  taxol/ cisplatin.  My marker went to 3200.  Again no symptoms.  cAT scan showed enlarged lymph nodes.  

Started Aromasin after the third cycle of chemo.   CA-125  was 1582' but CAT scan showed only one enlarged lymph node.  Had the stereotactic radiation to that lymph node.  

I think they have made a lot of progress with treatment of UPSC.  I don't think the doctor can really tell you about survival rates.  Everyone is different.  As Jan used to always say " we are all a statistic of one".  the doctor told my husband when I was diagnosed that when a recurrence occurs the outlook is poor.  I have proved him wrong.

when I recurred again after only 7 months, I asked if recurrences would come more frequently.  The nurse practioner said " usually they do".  Again I have proved them wrong.  It's been 29 months since my last chemo.  So don't give up hope.

it is normal to feel nervous before each check up. Your CA-125 is normal, and you say you feel great.  So find some joy in each day and be appreciative for each day you have.  I am glad you have the support of your husband.

if you have anymore questions, feel free to ask.  In peace and caring.

Abbycat2's picture
Abbycat2
Posts: 641
Joined: Feb 2014

I agree, Ro, that this study is old (stats from 1987 to 2009) and much progress has been made in the treatment of UPSC.  Unfortunately, that is usually the case with these research studies.   My oncology nurse said that cancer is basically treated today like a chronic condition.   Also, I remember reading somewhere that in the not so distant past not much was done for women with stage 3 or 4 UPSC disease.  Maybe they got radiation, but probably not chemo.  What I personally liked about this study was that I learned that I at least have a chance of long-term survival; initially I thought I had no chance at all.  I also learned in October (2013) that I had cancer and I am now, one year later, in a much better place. My cancer diagnosis has changed me, mostly in positive ways.  I feel good and am enjoying each and every day and looking forward to new adventures. I leave for a trip with family to the Galapagos Islands next week and I can't wait!  Cancer has made me realize that I only live once and I am going to live it up! 

Glad to see that you are doing better, Ro, and that you are done with your treatment.   Hopefully, your cough is going away, too, and you are sleeping better.  The weather now in Florida has cooled down and is wonderful. 

Best wishes,

Cathy

 

ConnieSW's picture
ConnieSW
Posts: 1415
Joined: Jun 2012

Thank you for posting this.  It's the most concise review I've read and only  two years old.  As a 1a, it gives me lots of hope.  Previously I have read that UPSC isn't usually diagnosed in the early stages and many women don't have symptoms.  This study had a lot of 1a, 1 b.  I would love to know how their cancers were discovered.  I had symptoms and a pap showed abnormal cells.  I was lucky.  In addition to decreasing the frequency of paps, the system now is trying to tell us that an annual exam isn't needed for many of us.  Although there isn't supposed to be a hereditary component, I'm grateful my daughter's gyn is choosing to follow her very closely.  You never know what they'll figure out next.  We certainly don't know everything.

dkdrew's picture
dkdrew
Posts: 15
Joined: Jul 2014

Ro, I just want to say thank you for continueing to post your journey here. You are such an inspiration. I read about all that you've gone through and it gives me such hope and I'm sure I'm not alone in that!

Kathy

 

shortmarge
Posts: 296
Joined: Nov 2008

Haven't been on the site for quite awhile.  Just wanted you to know that I was diagnosed Stage 2A UPSC and clear cell.  Cancer Free 6 years tomorrow!!!  I believe it's mind, body and soul (along with treatment).  Get Mad as Hell and tell yourself it's not going to get you.  Life is wonderful, don't stress, stress is so harmful.  Plus I eat a piece of raw ginger everyday, or put it in my green tea.  

 

Smile and live life!!  Smile

 

Marge

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

It is wonderful to hear that you have been dancing with NED for 6 years.  That is so encouraging for others.   Glad you are continuing to enjoy life.  May you continue to Smile, too.  I have been wondering how you were doing.  You were one of the original 10 with UPSC when I  first signed on to this site.  Please keep in touch to encourage others.  In peace and caring.

It happened to Me's picture
It happened to Me
Posts: 204
Joined: Apr 2014

Congratulations on 6 years NED.  I'm glad Roberta told us that you were one of the original 10 that started this board.  I hope you have many, many, many more years NED.    I was diagnosed with UPSC stage 3A in June, 2013 and last chemo. was Jan. 2014, so I am working on my 1 year NED. 

Jeanette

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2541
Joined: Mar 2013

Marge,

Thank you so much for popping in and letting us know.  This is such wonderful news and we all love to hear it. 

Keep kickin' it girl!

AWK
Posts: 364
Joined: Mar 2013

i was diagnosed 4/2013 stage IIIC after extensive surgery.  Had six carbo/taxol treatments, 28 radiation and 3 brachytherapy.  Five tumors were found at first three month checkup, all inoperable and only one was able to be safely biopsied.  Had 3 Doxil treatments and follow up scan showed more growth.  Now on avastin plan while awaiting genome testing to identify potential treatment options (non chemo).  Sounds not so great but actually I am working full time and enjoying life.  PS I was 50 when diagnosed.

Abbycat2's picture
Abbycat2
Posts: 641
Joined: Feb 2014

Hi, AWK,

I am not platinum resistant, at least not to my knowledge, but I was diagnosed with UPSC, stage 3A.  I finished treatment in March, 2013, with 6 rounds of carboplatin and taxol.   I think the genome testing will be a tremendous help in selecting appropriate treatment for you.  Can radiation treatment or cyber knife be considered?  I am glad to hear that you are continuing to work and to enjoy life.  Enjoying life right at this very moment is what life is truly about.  I just want you to know that I am thinking about you and hoping that you receive the very best care and treatment.  Were are you receiving your treatment? 

Warm Wishes,

Cathy  

AWK
Posts: 364
Joined: Mar 2013

Cathy, thanks for the good wishes!  I will take them!  Given the location of the various tumors, the spreading (not clustered or close to each other) and my radiation history radiation isn't an option.  Neither is any form of surgery due to vascular involvement.  I am in the San Fernando Valley of Los Angeles.  I am being treated at the Leavey Cancer Center at Northridge Community Hospital.  They have gotten opinions from the City of Hope and UCLA.  Both continue to consult on my case along with MDAnderson, Sloan Kettering and the National Cancer Institute.  According to the doctors I am in rarified strata.  I told them that when they told me I was a statistic of one I am pretty sure this isn't what they had in mind.  My frozen slides were sent out to Foundation One for testing; this company is affiliated with Sloan Kettering.  The side benefit is that others will benefit from my case too!  That makes me happy.  I will keep you posted and also send you wishes for good health and a long, happy life!  Anne

Abbycat2's picture
Abbycat2
Posts: 641
Joined: Feb 2014

Thank you, Anne, and warm wishes to you as well.  Anne happens to be my favorite woman's name, spelled the way you spell it.  It was my dear mother's name and is my middle name.  I always wanted my first name to be Anne!  Short and to the point.  No, instead it is long- Catherine!!  I always have to spell BOTH my first name and my last name.  Bummer....  ;-) 

ConnieSW's picture
ConnieSW
Posts: 1415
Joined: Jun 2012

How wonderful to hear from an old timer on this board.  You made everyone's day.

Maggie_mac
Posts: 32
Joined: Mar 2012

Hello All, 

I haven't been here in quite a while because it always seemed difficult to find the UPSC group to follow-up.  Today I searched "papillary" and ended up here. 

I was diagnosed with UPSC 3 years ago and it will be 3 years next month that I had surgery.  Because of omentum and peritonal metastases my cancer is stage 4B.  I had 6 sessions of taxol/carboplatin in 2012 and my CA 125 stayed low for about 9 months.  I did another 6 sessions in 2013 and that lasted about 6 months.  I did another 6 sessions this spring with my last chemo in May.  It's been almost 3 years since I've used a hair brush!

My oncologist has already mentioned that I seem to be platinum resistant and has said the next step is probably Doxil.  I would be interested in hearing of any experience with this product.  From what I've read it seems to have some limiting cardiovascular side effects.

Overall, I feel pretty good, although sometimes I just lack the desire to do some of the things I used to enjoy.  My best wishes to everyone.

 

Maggie    

 

 

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

I am sorry that  the taxol/carb is no longer working for you.  I can't imagine 3 years without using a hairbrush.   Ihave had 3 different rounds of taxol/ platins but my hair grew back between the rounds.  I have been bald four times.  I had the sandwich treatment initially and my hair grew back between the radiation and last three chemos.

you said you had a hard time finding this site.  If you google CSN ( Cancer survivors Network) and lick on the discussion boards and then Uterine, you should get to this site.   Then put it in your favorites, or bookmark it.

on the top of the uterine discussion board there are boxes for " keywords or titles".  If you type Doxil in one of the boxes you will get posts from some that have been on Doxil.  You might want to do that on the Ovarian Board also.  There have been more ladies on Doxil on the Ovarian board.

my doctor has mentioned Doxil if needed in the future, but luckily I have not needed it.  Many talked about problems with " hand and foot" sensitivity and peeling of skin.

I am glad that overall you feel good.  Your body has been through a lot.  Wishing you the best with further treatment.  In peace and caring.   Please come back and let us know how you are doing.

Maggie_mac
Posts: 32
Joined: Mar 2012

Hello Ro and AWK,

Thanks for your support.  I'm still having trouble navigating this site and finding where we left off.  I may have misspoken.  I have grown hair between chemo treatments; just not enough to be able to use a hair brush.  I let my fingers do the walking.  After the first round of chemo I took megesterol, after the second round it was tamoxifen and now I'm on letrozole.  I don't know if it is the letrozole or old-age osteoarthritis, but bone, joint and muscle pain are a real problem.  I consider myself a "young" 67, but I've had back problems since I was a teen and had a spinal fusion in 1965.  If anyone else has a problem with muscle cramps, I strongly suggest Tonic [quinine] water.  The quinine really helps and if it will work for you, it works quickly.

I've had neuropathy in my feet since the first chemo, but thankfully it has been lack if feeling rather than burning or pain.  When I get in the car I have to position myself to make sure I'm firmly in front of the gas and brake pedals.  I have never felt out-of-control but I am aware of my limitations.  The neuropathy has migrated to my hands, but I can still sew on a button.  Prior to the cancer, I made the first 5 grandchildren really fancy needlepoint Christmas stockings.  I'm trying to figure out what I can do for #6 and it looks like he'll have a sibling in less than a year.

I am not a doctor or a nurse, but I had a really wonderful 32 year career in pharmaceuticals.  Most of those years were spent in sales and sales training so I am what doctors consider "dangerous".  After my surgery I asked for a copy of my pathology report because I was getting conflicting results.  My oncologist was trying to protect me from the worst of the results.  Not everyone wants to know the whole story, but If you do, you own those reports.

I am happy to say I have had a rich and fulfilling life, even if I'm not ready to say good-bye just yet.  The most important thing is having peace in your heart.

Maggie

 

 

AWK
Posts: 364
Joined: Mar 2013

I went through three rounds of Doxil over the summer and it really wasn't that bad compared to carbo/taxol treatments. I am now considered platinum resistant.  The main side effects I had were being tired and lightly nauseous.  My feet did get dry and susceptible to blisters so I just put moleskin over the vulnerable spots and slathered on underlying smooth at night.  I worked full time the whole way through And we did a ton of other stuff.  I am having more side effects under the Avastin I am on now than the Doxil.  It was easy easy after all we have been through!  what questions can I answer for you?  Sending healing wishes!  Anne

AWK
Posts: 364
Joined: Mar 2013

Udderly smooth on my feet.  My blood pressure stayed normal, I ordinarily have low blood pressure.  Also, if you are inclined there is a clinical trial out there that you might qualify for using cabozantinib.  It is in phase two and showed good success in the first round.  I was all set for it, the team running it had a concern about one of my mestastic tumors adjacent to my heart.  A cardiologist and a cardio thoracic surgeon both opined it wouldn't be medically safe for me so I was rejected the day before I was scheduled to start.  Another thing my doctors have done is gotten approval from my insurer to send frozen sections out to Foundation One for genome testing.  We are awaiting those results which will identify further other types of cancer that might be present as well as various drugs the tissues appear to respond to.  All good things and hopefully options for you to check into if needed.  You are the first person in all of my searching that I have come across who is in a similar situation.  My doctors told me it was rarified strata and now I believe them!  We can do this.  Just another fork in the road on this journey.  Stay strong!

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2541
Joined: Mar 2013

Maggie, as Ro said, the Ovarian cancer thread has quite a few women who have been, or are on Doxil, but everyone is different so please keep that in mind as you read the different takes.  They may be able to help with advice on side effects as well.  It is good to hear you feel pretty good! 

Donna Faye's picture
Donna Faye
Posts: 214
Joined: Jan 2017

Had BC 20 yrs. ago - healthy until Dec.  Now looking at surgery on Monday to see if has spread from uterus. Wondering at my age,77, if I want to do the chemo thing again?  Any advice?

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1503
Joined: Jun 2015

Donna,

I would take this one step at a time. You won't know your staging until after surgery. Let's hope this was caught early and is contained.

Also, chemo treatments have improved a lot from 20 years ago. They still are not easy, but they are more doable. There is a thread titled 'Ladies Going Through Chemo' that has a lot of information that may help you. Several of us documented our journey.

Also, welcome to our board and please come back and let us know how you are doing after surgery. I hope it all goes smoothly and you recover quickly.  So sorry you are having to face this beast. We are here for you!

Love and hugs,

Cindi

ConnieSW's picture
ConnieSW
Posts: 1415
Joined: Jun 2012

I'll be with you in spirit Monday.  Don't even think about the chemo decision yet.  I will tell you I met a very spry 90 year old at my MD office who was doing well with chemo at the midpoint of treatment.  We are all different and there are no hard and fast rules.  Good luck.

Nellasing
Posts: 529
Joined: Oct 2016

I'm so glad you found this group and asked your question.  I echo what Connie and Cindi have both said.  You are obviously a very strong person with what you've been through already and look at all the wonderful life you've had, the memories you've made all because you faced treatment and marched forward.

You can do it, whatever "it" turns out to be.  One day at a time, one step at a time.  We are here to link arms with you and walk along together.  Come ask you questions, share your concerns- there are SO MANY smart caring ladies who have already been there.  I do hope you'll keep us posted.  We'll be praying for and thinking about you - especially on Monday!  (((HUGS)))

Abbycat2's picture
Abbycat2
Posts: 641
Joined: Feb 2014

Dear Donna, 

I don't post much any more on this board- not because I don't care but because I care deeply. And it has at times made me grieve. We have lost women here who I became fond of. It has saddened me to the point that I needed to withdraw. This may seem inconsequential, but I was forever changed by my psychology professor in graduate school- an existential psychologist- who said to me that " I should never get so close to another person that I need to back away." Well, that's easier said then done.

I have tried to do as he said, but it is not in my character. I have been a social worker working with dying people, a therapist in an outpatient mental health center and a resource specialist working with special ed students in a middle school, to name a few of the hats I've worn in my 44-year career. And you know what? I still connect emotionally with others and I still grieve. Emotional intelligence matters to me- I won't live my life any other way!

Donna, your journey has only just started and until you have your surgery and the removed tissue is evaluated in the lab, you don't know what your prognosis is or what the recommended treatment will be. Don't give up hope! I am sorry that you are facing this, but you have come to the right place for support. The courageous women here are wonderful and supportive.

I thought I would have succumbed to this disease by now, but now over 3 years out from my surgery I am still here and doing great without a recurrence. I was diagnosed with UPSC stage 3a. This is terrifying, I know, but hang in there! You have lived and learned for 77 years- you can do this! Chemo was doable and it will be doable for you if it is recommended. My montra: My body is stronge and healthy!! In 2016, I swam 257 miles at the local pool here in Florida. I believe in my heart that exercise has so far saved my life. Consider exercising if you don't already  do so.

Warm Wishes for a good outcome,

Cathy

 

Donna Faye's picture
Donna Faye
Posts: 214
Joined: Jan 2017

I am so glad I found this group! 20 years ago I started a support group when I had BC and we grew to 50 members. Men and women all sharing the trip down the C road together. So much easier.  I do have this bad habit of jumping way ahead of where I am! So, your advice was good to tell me - One Day at a Time! I am a horse rider so am very active and just hate to think of not doing that. All of your stories are so encouraging. Thank you so much!

 

 

Sandrine04
Posts: 76
Joined: Nov 2016

Je stage4 with métastases in the péritoine ... Qui d'Autre?

 

Donna Faye's picture
Donna Faye
Posts: 214
Joined: Jan 2017

Surgery went very well - this laposcopic robotic surgery is amazing. I am feeling good and being pampered by family and friends. The lab results will come back later this week so will see what we will see. Thank you all for being on this site.

DF

ConnieSW's picture
ConnieSW
Posts: 1415
Joined: Jun 2012

is great.  Thanks for letting us know.  Be sure to take it easy.  Your outside doesn't reflect all that happened on your inside.

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1503
Joined: Jun 2015

Donna, Glad surgery went well. Thanks for letting us know and please give us an update when you get your results back.

Hoping for the best possible news for you.

Love and Hugs,

Cindi

Nellasing
Posts: 529
Joined: Oct 2016

Thank you for coming back and sharing that with us- it's always so good to get good news!  Ditto what everyone has said about being gentle with yourself so you will heal completely with no complications.  It was still a big deal to your body.  Sending you peaceful thoughts as you wait.  (((HUGS)))

Donna Faye's picture
Donna Faye
Posts: 214
Joined: Jan 2017

I had no cancer outside of the uterus; 1A staging which was grateful news. I see the doctor on 3/3 for post surgery check and to discuss what she thinks is best follow up - observation or treatment.  I am feeling good and have resumed tutoring a child with chronic illness. She inspires me. Thanks again to all of you here.

Nellasing
Posts: 529
Joined: Oct 2016

A Win for today!!!!  So glad it was contained and your staging was 1A.  We'll be looking for your update in March as you see how things are and what they think treatment should be.  Glad you are feeling well.  It's amazing you are already tutoring a child- I'm sure you are good for each other.  (((HUGS)))

Kvdyson's picture
Kvdyson
Posts: 789
Joined: Jan 2016

Congrats, Donna. Although no cancer diagnosis is good, 1a is about as good as it gets. Hopefully you are continuing to heal well and are feeling stronger every day. Good luck to you and try to celebrate this good news! 

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1503
Joined: Jun 2015

Excellent news Donna! Glad you are healing well from your surgery too. I found I felt a lot better between week 3 and 4 post surgery. Please come back and let us know what your next steps are going to be!

Love and Hugs,

cindi

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

Great news!  I'm so happy you are feeling well enough to be tutoring.  Giving back and away is just the best therapy.

BenitaM
Posts: 1
Joined: Feb 2017

My mother was diagnosed with UPSC, stage III January 14th, 2016 after spotting (she was 77 when she was diagnosed). She had a full hysterectomy following diagnoses and 25 lymph nodes removed in which three of them had cancer cells. She went through approximately 6 month of treatment with 3 sessions of chemo, three weeks apart, followed by 28 days of radiation, followed by 3 more sessions of chemo. She finished treatment in August and because of the toll it took on her body, the doctor wanted to give her a break after saying he saw no traces of cancer. He did see a spot on her hip, however he thought it may be traces from the radiation treatment but that he would see her in 3 months to give her body time to heal.  Fast forward to November's CT scan and the spot that was on her hip was indeed the cancer spreading to her hip/pelvis area. The doctor decided to treat her with chemo that wasn't as intense as the initial sessions. She also had fluid surrounding her lung which was drained. The doctor wanted another CT scan done (which she had Feb 20th, 2017) to see if this round of chemo treatment is helping to contain the cancer cells within her pelvic area. We go back later today to find out if the cancer cells have spread. Very stressed as the doctor's overall prognosis isn't good. Of course my mother doesn't understand how we got her after being healthy most of her life. Prior to this life changing event, the last time she was in the hospital was when she had me 48 years ago. Praying that the cancer cells are contained and that she she can continue the chemo treatments. The great thing about it is her spirit is up and she has a strong belief in God. That helps to keep her going. She is tired and of course has lost weight throughout this process. I'll continue to post here as it helps me as well. 

Kvdyson's picture
Kvdyson
Posts: 789
Joined: Jan 2016

Benita, I am so very sorry to hear your mother's story. She sounds like a very strong woman and she obviously did a great job raising a loving, caring child. It sounds like she has a good medical team helping her and that they are on top of things.

This is a great group and I'm so glad that you found us. You may want to consider starting a new post so that replies are easier to follow.

Please stay hopeful and let your mother know that we're rooting for her (and you)! Kim

 

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1503
Joined: Jun 2015

Benita, Welcome to the group.  So sorry about your Mom. I'm happy that she has you in her life to help her through all of this...

Please feel free to come back with any questions. Or, just to vent if you need to. The ladies here are very supportive, helpful and knowlegable....

Love and Hugs,

Cindi

Nellasing
Posts: 529
Joined: Oct 2016

So sorry to hear about the ordeal you and your mom have been through!  Here's hoping that this time will be the ticket to containing all those dang cells once and for all!  I'm glad you found our group as these ladies are so supportive and helpful.  Please do come back and vent or ask questions, whatever makes it easier- we're here for you and your mom.  Thought and prayers and big ole (((HUGS)))

Lou Ann M's picture
Lou Ann M
Posts: 996
Joined: Feb 2015

So sorry that your mom has had to go through this.  She certainly is lucky to,have a loving daughter like you.  I hope she gets only good news.

 Hugs and prayers, Lou Ann

Donna Faye's picture
Donna Faye
Posts: 214
Joined: Jan 2017

Ladies, I can really relate to Benita's mom. At 77, I am a healthy active woman with UPSC who now has to decide if I want 3 rounds of chemo which my doctor recommended today. The doctor was very supportive to whatever I decide but if I choose chemo, she wants to start next week! My daughter was with me and she suggested I do one round and see what it is like. I want quality of life and wonder if 3 rounds of chemo will give me a better life or not. SO! Any advice is welcome. How did you feel? Will I need help while taking chemo? Benita, how does your mom feel about going on with more treatment?  I have 3 supportive kids and friends who will see me through this, but I just hate being taken care of. Let me know what you think. So thankful for fellow passengers on a trip we would have preferred to miss.

Lou Ann M's picture
Lou Ann M
Posts: 996
Joined: Feb 2015

But it is very doable.  I was 65 when I got on this rollercoaster and was still working.  I had my chemo on Wednesdays and went back to school on Thursday and Friday.  I usually started felling fatigued and had bone pain for the next two day and felt good enough to be back at school on Monday.  Staying hydrated is important and ask,for a prescription for nausia and pain.  Start Myralax before constripation becomes a problem.

Hugs and prayers, Lou Ann

Nellasing
Posts: 529
Joined: Oct 2016

there are many ladies here who have the more technical side down so I will leave that to them - just wanted to let you know everyone is different in how they feel and deal with these things.  I wouldn't say you "needed" to be taken care of but it is a blessing to let others be there for you, they are dealing with a lot themselves.... this is a journey best taken together.   As for myself, I took an integrated approach and had a naturopath helping support my healthy body while the traditional took care of the other.  I think that approach helped me suffer less and get through it more easily with less overall damage- only time will tell.  I also had acupuncture and took IV treatments in between.  Sending you ((((HUGS))) and prayers as you decide what is right for you.

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Kvdyson
Posts: 789
Joined: Jan 2016

My experience with chemo was drama-free. Like Lou Ann noted, it's not pleasant, but it's also not what you see in the movies or on tv. I had very few negative side effects and the ones I did experience were managed expertly by my oncology nurses. Others have not been as lucky as me and your experience may end up being different, too, but just keep in mind that it's not automatically a bad experience. Good luck to you! Kim

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Donna Faye
Posts: 214
Joined: Jan 2017

I have literally spent the weekend reading all the blogs under uterine cancer. How much knowledge is shared here from the ones on the front line. After talking with my 2 sons ( one an RN) and my daughter, it looks like the 3 chemos and some radiation may be the best route to go if I want that NED to appear down the road. They are setting up all the appt's. now so should have a schedule soon. I am at Duke Cancer Center in Durham. I am very grateful for all the women who write on these blogs. We are so open and share the good and the not so good. Certainly makes decisions easier to make. Hugs to all.

Nellasing
Posts: 529
Joined: Oct 2016

That decision making in and of its self will be a huge weight off your mind.  Prayers and (((HUGS))) for the journey ahead- please keep us posted <3

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