Roll Call

sunflash said:

June 17, 2011, UPSC presumed
June 17, 2011, UPSC presumed to be 1A, was discovered after I began having atypical endometrial cells (AGUS) pap smears. Davinci hysterectomy performed including cervix, uterus, fallopian tubes and ovaries. No lymph nodes were sampled as cancer was not suspected. UPSC was confirmed (4.5 MM polyp) after the uterus was cross sectioned during the pathology process.Pathology showed negative wash, but suspicion of LVSI. This was my second primary cancer.

2nd opinion received from MD Anderson and doctors agreed with treatment plan and agreed that cancer was not advanced. Have had only one CT scan since treatment, and CA 125 is 4, but probably not good indicator for me as it was never elevated.

I received 6 cycles of Taxol/Carboplatin spaced 3 weeks apart. No radiation was given as I had already had radiation treatment during my vaginal cancer treatment in 2007.

Treatment finished Nov 11, 2011. I see my doctor every 3 months for checkups. Next appointment in January will be 14 months post treatment.

Vaginal cancer diagnosed in March of 2007. Received weekly Cisplatin with daily radiation treatments and brachytherapy. Had no complications from radiation and NED for almost 6 years (Woo-Hoo!)

Feeling blessed that UPSC was caught early because of being watched carefully by my gyno-oncologist.

Prayers and Christmas blessings for all of you,
Diane in Houston

Hi and Happy Holidays from Jerusalem, Israel

 My house is one of the red tiled roofs in this picture of Western Jerusalem with old and new together. I made my ID photo Jerusalem with the a three Holiest places for the three main religions. My prayer to us all is Peace and Full Recovery!

 In July 2010 on 'holiday' to NY.Dx pretty much on my own initiative after two weeks of constipation that didnt improve and 'kick in' with first line of defense which I started back home: prunes, laxitives, enmas. Went to Gastro Doc on a Friday. Told me: run don't walk for Bloods and CT. By Monday had appoint at Gyn/Onc. By Thursday surgery. Full 'roto router' and removal of all uterus and points east, west, north and south. Stage IV B Grade 3 Uterine Adenocarcenoma, Clear Cell and Undifferentiated, Omentum out, and in ascitis (?).

Did research on Chemo option in NY. Felt that as my Stats were in the toilet and all that I had going for me was attitude, and Chemo is in a bag in USA and Israel, I,d go home where I had support system of family, friends and hospital where I have worked for 26 years as Psychologist.

did Carbo six rounds once every three weeks. Taxol every day four times for four rounds, then two rounds prof Doxil still with Carbo. White and Red count in toilet, needed multiple blood transfusions to keep on protocol. done Jan 2011. CT ok in May no ,permission, payment, For PET. Worked on days I could.

Had regular blood tests, Cancer Markers all fine.

September, Rosh Hashana our New Year, felt PTSD, same constipation, same pain, Day after got myself to CT, guy I'd treated owed me favor and took me immediately, 8cm tumor. 

Doc consensus to do chemo to shrink tumor then operate. I'd finally built up my stamina and felt getting me 'down' by Chemo then Surgery Was nuts. Paíd for PET, Was Repaid by INSURANCE when they saw tumor.

sent results  To MY NY GyN/Onco And PhD he'd look ands see if he could operate without first chemo to shrink. Tumor touching but not in colon. Operated, resected 15cm of colon. Started yoga and excersizeing ten days after surgery. Chemo R something, I am blocking out name , put me flat out. Went home six weeks after surgery.

restarted chemo. Immune system pretty much crashed. No more chemo. Began Radiation Cause new tumor seen in lymph nodes in pelvic area. Finished Feb 2012. Went to Hong Kong and Australia with hubby. Back for Passover with family.

august 2012 new lymph node lit up on PET, now insurance doesn't argue as the bloods and ca hormone Tests were fine and tumor still there!

New Rads in three places. Peri ventricular - neck, peri aortic- stomach and pelvic wall. Finished with that one July 2012. new tumor Sept in stomach wall lymph node. Rad again finished month ago, November. Went to London last week, party for dear friend and gave a lecture.

Pet yesterday. Two nephews Radiologist, got 'unofficial' I.e. Not from hospital but from their private practices, one here and one in States-- glory of computer zapping disc results!

heard last night, early morning our time. Looking good. No new sites, yet.

by the way bought a Far Infa Red Sauna, research shows does Hypothermia and cancer cells tend to apoptosis (?) commit suicide! Anyway very relaxing can stay inside it for over Half an hour unlike wet Swedish saunas, ten minutes. hubby loves it and he deserved a Chanukah Present too!

now 6:44 am up since 5:30. Will do half hour on treadmill, then FIR Sauna then shower and off to work  till two, used to work till seven.

Thai Massage Thursday, try for once a week. 

That's all folks.

p.s. love new site once they let me back on!

 

Sara

MMMT Stage 1A

Name:  Sharon

Age: 54

Location:  South Windsor, Ct

Diagnosed:  official pathology done at surgery on 12/12/12, Stage 1A MMMT

Surgery: total hysterctomy,  had upwards of 61 nodes taken

Treatment - in process of determining.  .  Tumor board reviewed case and felt was good candidate for trial of just chemo given total containment to tumor and minimal invasion of uterine. Going to Dana Farber on 12/28/2012 for second opinion and their thoughts on this.  Dr's awaiting this appt and than will meet with Medical oncologist, radiologist and as a team decide traditional (chemo/radiation/chemo) or trial of 6 rounds of radiation.  More to come. 

 

I am in the process of changing my lifestyle.  I have a high level corporate job that can bring on stress.  Will need to approach this differently going forward, boss very supportive.  Have changed up my diet to be more cognizant of what I eat and why.  Read the Anti Cancer book and fods to fight cancer and have learned a lot.  Feel so much better with the way I am eating.  I am hopiing to add more relaxation and "me time" into my life through possibly meditation or yoga or even taking time to knit or read a book.  Overall hoping to get back out soon back on my bicycle leading rides.

 

thanks to all that are members here that have helped me stay positive and know I can beat this!

Age: 39 (38 at
Age: 39 (38 at diagnosis)
Went to gyno at least 4 times complaining until she finally did a biopsy.
Diagnosed Oct. 5th, 2011 with grade 3 adenocarcinoma
Surgery was Oct. 28th, 2011 at University of Washington
Stage 2b, grade 3, outer 3rd invasion, LVSI = high risk of recurrence
1 taxol/carbo. Horrible reaction to taxol.
2 carbo only
3 carbo/taxotere
25 extended field radiation b/c my uterus ripped during surgery as gyno/onc was trying to remove scar tissue from my c-sections.
3 brachytherapy
Positive Lynch Syndrome
Complications: infected port resulted in sepsis and a blood clot in my jugular vein which is completely closed off and will be for the rest of my life. Not to mention my horrible reaction to Taxol which landed me in the hospital last Christmas.
Last pet was Nov. 30th, all clear.

All of this is terrible, but I am not complaining. So far, so good, for me. It has been 14 months since that awful tumor was taken out of me and I have remained NED thus far. I know I would not be alive today if I would have waited any longer, I should say forced to wait any longer. I'm in good hands now and for that I am thankful. This Christmas has been much, much better than last year. Thanks to you all for your support and open discussion here. It has helped me through so many dark days.

Sara Zipora said:

Hi and Happy Holidays from Jerusalem, Israel

 My house is one of the red tiled roofs in this picture of Western Jerusalem with old and new together. I made my ID photo Jerusalem with the a three Holiest places for the three main religions. My prayer to us all is Peace and Full Recovery!

 In July 2010 on 'holiday' to NY.Dx pretty much on my own initiative after two weeks of constipation that didnt improve and 'kick in' with first line of defense which I started back home: prunes, laxitives, enmas. Went to Gastro Doc on a Friday. Told me: run don't walk for Bloods and CT. By Monday had appoint at Gyn/Onc. By Thursday surgery. Full 'roto router' and removal of all uterus and points east, west, north and south. Stage IV B Grade 3 Uterine Adenocarcenoma, Clear Cell and Undifferentiated, Omentum out, and in ascitis (?).

Did research on Chemo option in NY. Felt that as my Stats were in the toilet and all that I had going for me was attitude, and Chemo is in a bag in USA and Israel, I,d go home where I had support system of family, friends and hospital where I have worked for 26 years as Psychologist.

did Carbo six rounds once every three weeks. Taxol every day four times for four rounds, then two rounds prof Doxil still with Carbo. White and Red count in toilet, needed multiple blood transfusions to keep on protocol. done Jan 2011. CT ok in May no ,permission, payment, For PET. Worked on days I could.

Had regular blood tests, Cancer Markers all fine.

September, Rosh Hashana our New Year, felt PTSD, same constipation, same pain, Day after got myself to CT, guy I'd treated owed me favor and took me immediately, 8cm tumor. 

Doc consensus to do chemo to shrink tumor then operate. I'd finally built up my stamina and felt getting me 'down' by Chemo then Surgery Was nuts. Paíd for PET, Was Repaid by INSURANCE when they saw tumor.

sent results  To MY NY GyN/Onco And PhD he'd look ands see if he could operate without first chemo to shrink. Tumor touching but not in colon. Operated, resected 15cm of colon. Started yoga and excersizeing ten days after surgery. Chemo R something, I am blocking out name , put me flat out. Went home six weeks after surgery.

restarted chemo. Immune system pretty much crashed. No more chemo. Began Radiation Cause new tumor seen in lymph nodes in pelvic area. Finished Feb 2012. Went to Hong Kong and Australia with hubby. Back for Passover with family.

august 2012 new lymph node lit up on PET, now insurance doesn't argue as the bloods and ca hormone Tests were fine and tumor still there!

New Rads in three places. Peri ventricular - neck, peri aortic- stomach and pelvic wall. Finished with that one July 2012. new tumor Sept in stomach wall lymph node. Rad again finished month ago, November. Went to London last week, party for dear friend and gave a lecture.

Pet yesterday. Two nephews Radiologist, got 'unofficial' I.e. Not from hospital but from their private practices, one here and one in States-- glory of computer zapping disc results!

heard last night, early morning our time. Looking good. No new sites, yet.

by the way bought a Far Infa Red Sauna, research shows does Hypothermia and cancer cells tend to apoptosis (?) commit suicide! Anyway very relaxing can stay inside it for over Half an hour unlike wet Swedish saunas, ten minutes. hubby loves it and he deserved a Chanukah Present too!

now 6:44 am up since 5:30. Will do half hour on treadmill, then FIR Sauna then shower and off to work  till two, used to work till seven.

Thai Massage Thursday, try for once a week. 

That's all folks.

p.s. love new site once they let me back on!

 

Sara

WOW!!!

Sara

I cant get over your strength & energy through all this!!!!!

I am on Doxil and in bed for most of the cycle

How do you do all that travelling ???

You are indeed an inspiration

My initial Carbo/Taxol did not work...aside from some fatigue, breezed through it, but it was ineffective

Made 2 visits to Cuba to visit my hubby who lives in Colombia (this is another story), but this time on Doxil, can barely get outa bed, let alone travel

Will be finished Doxil by March, and hope to meet him in Cuba (I live in Canada) then...hopefully the Doxil will have been successful...if not, inspired by you, and others on this site, on to the next option, whatever that may be.......but preceded by visit with hubby

 

Thank you for being a positive role model and inspiration.....it helps me alot to think that in just a couple of months, regardless of the next step in this wonderful "journey", I will be lying in my husband's arms on the beach!

Are you being treated in Israel or NY?

An oncologist at NYU, where I used to work as an ER MD,  recomended Doxil and Avastin when my 1st line chemo was ineffective, so that is what I am on.....treated at Princess Margaret Hospital here in Toronto

All the best to you and please tell me your energy secrets

SHANA TOVA,

Beila

beila said:

WOW!!!

Sara

I cant get over your strength & energy through all this!!!!!

I am on Doxil and in bed for most of the cycle

How do you do all that travelling ???

You are indeed an inspiration

My initial Carbo/Taxol did not work...aside from some fatigue, breezed through it, but it was ineffective

Made 2 visits to Cuba to visit my hubby who lives in Colombia (this is another story), but this time on Doxil, can barely get outa bed, let alone travel

Will be finished Doxil by March, and hope to meet him in Cuba (I live in Canada) then...hopefully the Doxil will have been successful...if not, inspired by you, and others on this site, on to the next option, whatever that may be.......but preceded by visit with hubby

 

Thank you for being a positive role model and inspiration.....it helps me alot to think that in just a couple of months, regardless of the next step in this wonderful "journey", I will be lying in my husband's arms on the beach!

Are you being treated in Israel or NY?

An oncologist at NYU, where I used to work as an ER MD,  recomended Doxil and Avastin when my 1st line chemo was ineffective, so that is what I am on.....treated at Princess Margaret Hospital here in Toronto

All the best to you and please tell me your energy secrets

SHANA TOVA,

Beila

Dear Beila,

When I Doxiled I read Linda, z'l, May she RIP, stuff on Doxil like the Holy Grail, you can still find it in archives. I bought fuzzy crocks for winter, tights without feet, all to watch my feet from getting neuropathy. Still got a it bit, but not too bad, feel toes But go to pedicures once a month at least to make sure I don't miss ingrown toe nails.

 

Also follow Servan Screiberer diet rigidly and olive oil, Tumeric and freshly ground black pepper in fry pan before I cook or stir fry vegs or anything. And I mean anything including whole wheat toast!

Eat frest small fish like sardines, something known here as Barbunia, kinda reddish fish on idea that the smaller the fish the less fish it ate that was in mercury filled water, As farmed fish, also lamb which are grass fed and goat cheese, same idea.

Pretty much stick to Mediterranean diet which ain't too hard here in mediteranian country but caught On in usa of late too.

Listen to your body. I find tiredness doesn't come gradually but as a steep cliff, no time to feel it coming, energy then, gone. Have a futon in my office to take a nap. That helps.

also I know I don't know anything, but neither do docs, so we aren't alone!  We are all cases of one.

This ain't Disneyland but it is our ride, so make the best of it.

Love and good health and 'tidings', what does that mean anyway? To all,

Sara

signing in

Age: 63

Location: New Jersey

Diagnosis:  UPSC stage 4B grade 3 with cancer found in all 39 lymph nodes tested

                 Diagnosed September 21, 2010   at Sloan after  surgery that  removed everything (optimal debulking)  and there was LOTS to remove

Treatment: Entered clinical trial at Sloan in November 2010.  Carbo platin, Ixabepilone, and  Avastin once every three weeks for 6 treatments and then continued

                 with Avastin alone every three weeks for maintenance. Will remain on the Avastin till sign of recurrence according to rules of clinical trial. CA125  remains at 3.

Current status: still NED  as of last week's cat scan

Genetic status: just tested positive for BRCA 2 mutation

Diet: No meat, poultry,  sugar or dairy. Minimal fruit and grains.  Almost everything organic. Mostly eat all veggies( except white potatoes), wild caught salmon, organic

        eggwhites, seeds, nuts , gluten free whole grain bread, and as many fermented foods as possible. Have a smoothie with black raspberries and freshly ground flaxseed

(and other        ingredients)  every single day.  Apple cider vinegar (raw), raw honey and garlic blend every day   great for insulin resistance.

Exercise: Walk for an hour carrying little weights every day

Current  feelings: Life seems so normal now that many days I actually sort of forget about the disease.  A recurrence (which statistics say is inevitable) would now be

                          devastating to deal with as I truly know what it means to have my life back.

Focus of life now: retired and enjoying my husband, children, many grandchildren, hobbies and all the wonderful people in the retirement community where we just moved to.

Message  to everyone: Blood tests show that I have really changed the terrain in my body with my restricted diet. Especially important  I think is the level of insulin and

insulin-like growth factor.  The above diet  seems to be working to keep the levels of these hormones low.

Sisters three said:

Okay roll call

Name: Lisa

Locaton:Charlotte, NC

Diagnosis: Endometrioid Adenocarcinoma Figo Grade 2- (11-19-12 diagnosed through Endometrial Biopsy)

                CT scan shows nothing 

                Scheduled surgery is January 7th  ( wait was due to Husbands need for immediate surgery for aortic anurysms)

Symptoms were spotting for several months off and on after becoming post menopause.

After surgery I will update with new findings based on pathology. I'm working on an out come where the GYN/Onco

says oops sorry you don't have cancer at all!!!!!!!  :-)

                

Hi Neighbor

I'm in Monroe but make the trek to Charlotte to LCCI as needed.  Got my fingers crossed for your wish.

Newbie

Good morning,

Still trying to figure out how to navigate this site.  DX with endometrial stage IV as of March, 2012.  Sailed through 6 rounds of taxol, carboplatin with minimal inconvenience and CA125 went from 917 post SX to normal!  Yay, you say.  First PET/CT at end of chemo cycles were fine and dandy.  Three months later (December), it's baaaccckkk.  CA125 shot up to 314 and the CT scan showed subtle changes in pelvic lymph nodes.  My oncologist and surgeon put their heads together and decided that because of very late stage DX, "cure" was out of the question but there was every hope for remission (again) using Gemzar and Carboplatin (I'm not a candidate for Cisplatin for other reasons).  Oncologist said it was a gut punch for everyone.  The only symptom I had was swelling in the abdomen - ascites - but as an overweight person, I attributed this to just being fat.  When I looked as if I were in my 9th month, it got scary and I had tests and the DX was made.  After the initial surgery I had to have over 3000 mL of fluid drawn off due to ascites.  My surgeon told my family that he got what he could, 95%, and it was miscroscopically invasive but chemo would take care of that.  Obviously not. I know I'm not alone out here.  I feel fine and am actually looking forward to the next rounds of chemo. 

DanielleyMe said:

Hello!

Name- Danielle

Age- 21

Story-

Hi *waves timidly* My name is Danielle but you can call me Dani. In May 2012 i was Diagnosed with Uterine Cancer. It was a rare form to be found in someone my age (20 at the time) and it was agressive. I had a hysterectomy(pardon my spelling) and found out the staging was Stage 1 b because the tumor was over 50% through my uterine wall. I then spent my entire summer receiving chemo. I am now in remission and i came on here because, now that all is said and done..I'm not coping as well as i hoped i would be.

is that normal? To feel almost hopelessly depressed after finally reaching remission? During my chemo, i had a lot of really scary things happen. I was on a clinical trail and it really messed with my head. I was a nervous wreck and everything was just terrible...now that it is over...I feel like i haven't really coped with what has happened to me. I don't know what to do.

H Dani

Dani

I too wish I was close enough to run over and give you a hug. And wow a Dani party this weekend would have been fun.  Maybe we could have a cyber one!

 I am in Ct, so let me know if I am any where's close.  I am not a sleeper as can be attested by my daughter a little older than you who calls me all hours of the night to talk.   I love to talk and listen.   I am here, just a few steps behind you.

You are so young to have to go through this.  Similar to Sister's three I am also a newbee.  I have had my surgery but working through the treatment plan but have found wonderful support from the ladies here from all over the world.  I did find that once I reached out to someone I knew who had gone through what I am in the process of,  talking directly to someone who really did understand, was so comforting.

Dani, I was at Dana Farber Institute in Boston yesterday and there was an entire newsletter devoted to young adults similar to you who have had or in the process of going through what you have had to endure so far.  They have recently put together young adult's with cancer support groups to address the issues that are very specific to  young adults.  The results reported to date have been wonderful.  Maybe this is something you might find close to your home

Hugs from a far and thoughts always,  TTL

Sharon

 

 

 

MMMT Stage 2 High grade

Diagnosed July 2011 at 46 after a period of heavy bleeding.

After completely hysterectomy, received 6 rounds of Ifosfamide/Taxol over a 3 day period ever 3 weeks with 25 rounds of pelvic radiation sandwiched between chemo treatments.   Experienced no major side effects from either the chemo or the radiation and worked full time throughout.

Last treatment March 2012 and celebrated by taking a camping trip to Montana with one of my dogs.

Currently NED and other than a panic attack around the time of my six month CT scan, I seldom worry about a reoccurence; not because I believe it can't happen, but because there is nothing I can do about it if it does.

Take care all!

Cindy