Roll Call

Sara Zipora said:

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

Original Dx: Adenocarcinoma Sept 2010, TAH Oct 2010, plus 3 internal rads

Recurrence: Aug. 2012 (no symptoms, found in CT scan for kidney issues)

So, am now Stage 4 mestastasized - small lesions found in lung, liver and omentum

Have done 5 of 6 Carbo-taxol sessions (once every 3 wks)

Side effects a little worse each time, and take longer to go away, but nothing too severe - I'm still working 4 days a week.

Chemo seems to be working. CA 125 was in high 300s when I started, is now in normal range, plus I had ascites and was quite sick before I started chemo, but improved rapidly after 1st round.

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

          Sara

"tidings", as in "tidings of comfort and joy" is just an old-fashioned way of saying "news" of informations.

To all on this board, I hope all of us receive good tidings in 2013!

NancyZ

Cary, IL

Hi everyone! I'm new to this board and my story is very long so I'll give you a quick abridged version.

Dec. 2007-diagnosed with stage 2B Endometiral Cancer-partial hysterectomy,25 external beam radiation treatments, 3 brachytherapy

Oct 2009-1st recurrence-Da Vinci surgery to complete hysterectomy, 4 rounds chemo-Taxotere and Carpoplatin

June 2012-gall bladder surgery at which time my surgeon discovered nodules in the pelvic area (2nd recurrence). Currently undergoing chemo-completed 6 rounds Taxotere/Carboplatin which caused neuropathy so I'm now taking Doxil every 28 days. The tumors have reduced in size but have not disapperared as hoped.

I'd love to hear from any of you who have a similar diagnosis.

debrajo said:

oopps

Hi Icare, sorry you are here, but we try to take care of each other.  A lot depends on the KIND of cancer,the stage and grade(after surgery). I was 1a, but grade c(aggressive)and poorly differentiated(not good).  I wasn't really given a choice of treatment for my UPSC.  It was either everything or goodbye.  I had a total, radical hysterectomy,full belly open and everthing but nodes taken out.  Six rounds of Taxol/Carboplatin and five rounds of internal radiation.  Not easy, but doable.  I am 32 months out of treatment and doing well,thank God.  You are getting ahead of yourself.  Wait til after surgery when all the results are in then make your choise.  There will be plenty of time after surgery to get your head wraped around everything.  Of course you are overwhelmed....just the diagnosis is like a sucker-punch!   Let us know what we can help you with, ask all the questions you want...we talk about EVERYTHING here!  Best, debrajo

thank you Debrajo. I don't know about getting ahead of myself because I don't I am not a big fan of surprises. When the doctor told my husband that we should think about where we wanted to go for treatment, I did research on all the various uterine cancers. this was helpful when she called with the results, I was able to understand most of what she was saying and even had researched physicians which turned out to be 2 of which she recommended. In the end, she agreed with a physician I had researched and wanted to use. When the oncologists offers up treatments, I want to make an informed choice, so I am researching all the possibilites as well as, the consequences. What I am not able to find is if chemical or harsh treatments or not used, what else is available? What are the physical consequences for delay of treatment? As fara as the coming surgery, how are personal care and relationships affected? bladder and holding urine issues? sexual relations, if the cervix is removed? does the vagina change position or shape? when nothing is in that space, does your intestines/other organs "drop in" to fill the void? does my fat fill the void? Perhaps these are odd questions or there are no anwers. As I said, I am not a big fan of surprises, so I am curious and want to know what to expect. ;-)  I have a wonderful friend that watched her daughter rejoice in her last 8 months and we had cocoa and 4 hours of talking and laughing and crying and hugging today. She helped me have a new perspective on a particular concern I had about the surgery. I can now say I am at peace right now. My appt is tomorrow and I hope my peace and understanding will continue. You seem to have a most positive attitude about your journey and I pray that I can emulate that and learn from you and the other women here. I will check back tonight and in a couple of days. THANK YOU debra! 

debrajo said:

oopps

Hi Icare, sorry you are here, but we try to take care of each other.  A lot depends on the KIND of cancer,the stage and grade(after surgery). I was 1a, but grade c(aggressive)and poorly differentiated(not good).  I wasn't really given a choice of treatment for my UPSC.  It was either everything or goodbye.  I had a total, radical hysterectomy,full belly open and everthing but nodes taken out.  Six rounds of Taxol/Carboplatin and five rounds of internal radiation.  Not easy, but doable.  I am 32 months out of treatment and doing well,thank God.  You are getting ahead of yourself.  Wait til after surgery when all the results are in then make your choise.  There will be plenty of time after surgery to get your head wraped around everything.  Of course you are overwhelmed....just the diagnosis is like a sucker-punch!   Let us know what we can help you with, ask all the questions you want...we talk about EVERYTHING here!  Best, debrajo

sorry for the repeat, slow connection

Symptoms and Diagnosis:

In the spring of 2010, at the age of 52, I thought I was close to menopause, not having had a period for eleven months. But in June, it started up again. After two months of more or less steady vaginal bleeding, plus a watery discharge, I thought I’d better get it checked out. Unfortunately, the first gyno I found I didn’t like much, and I decided not to take him up on his offer to do an endometrial biopsy in his office--mostly since it was the day before my wedding (July 2010). To quell the bleeding during my honeymoon, the doc prescribed some Estradiol. Probably not a good plan, now that I know what I know.

I saw a gyno I liked better in September, 2010 but she wasn’t too concerned; my transvaginal ultrasound didn’t look bad. We scheduled a D&C for January, since I’d also started a new job and didn’t want to take time off right away. But by November I was really ill, and by late December I was hemorrhaging more than bleeding.

The D & C I had in January, 2011, confirmed grade 2 endometrial adenocarcinoma; my husband and I went back to the gyno for the official news on my older daughter’s 26^th birthday.

I had surgery—DaVinci TVH & BSO—in February, 2011. Pathology showed LVSI plus some cervical involvement; also, several lymph nodes in pelvis and para-aortic region came back positive for cancer, including one node that could only be partly resected. That produced the Stage IIIC2 diagnosis.

Treatment:

I started doxorubicin (Adriamycin) and cisplatin three weeks post-surgery. I completed 6 rounds despite having serious neutropenia after the first round, which landed me in the hospital and indirectly cost me my job. Neulasta took care of the neutropenia on later rounds.

Upon completion of the chemo in August 2011, I was supposed to have external pelvic radiation, but my chest CT came back with eight small nodes, which meant radiation was moot. I started Megace at that point, since my tumor cells were strongly ER and PR +, and obtained a second opinion. That consult confirmed that I was probably in the best place for oncology treatment already.

I also began several alternative/complementary treatments, some of which I continue today. Reiki helped me eliminate my fear. Meditation and visualization helped with that, too. Yoga and qi gong were therapeutic and reassuring, especially in early recovery. Deep breathing, singing, and walking in natural beauty made a difference as well.

For a while I was completely vegan, and I consumed a LOT of wheatgrass. I need to get back into a more healthy diet than what I’ve pursued in the past few months. I like the Anti-Cancer approach very much. I still take very large quantities of Vitamin D3, since my levels were 12 when I was diagnosed; they’ve rebounded well.

My most important complementary treatments have been Ayurveda and acupuncture. Acupuncture eliminated my neuropathy completely and now supports my immune system. Ayurveda has helped  promote an integration of body, mind, and spirit in this fight for my life.

Current status:

Each CT scan since the bad one in September, 2011 showed continuous improvement until I reached NED officially in June, 2012. My latest onco consult, yesterday, confirmed that I’m doing well. My CA-125 levels have always been low, even with the lung mets, but now they’re down to between 6 & 10. My next CT is in April. My oncologist has had some patients on Megace alone for many years without disease progression, and I am hopeful I'll be in that group. The worst side-effects are night sweats, but I'll take them gladly if the other choice is getting sicker or needing chemo.

Current activities:

I qualified for SSDI shortly after losing my job, but that benefit doesn’t make up for the loss of income from work plus health insurance, which I carried for my family. The financial impact on us of my cancer has been sudden and severe, especially since many of my treatments are not covered by insurance anyway. I’m hoping to do some freelance editing for students in this big university town where we live (SE Michigan) to help us catch up.

My husband has been valiant through all of our challenges. My daughters have had some tough times, especially my now 16-year-old, but she is more stable too now that I am better. The almost 28-year-old is a rock, though I still try not to burden her to excess.

I’m planning a big party, which may also be a fundraiser, for my birthday early next month: “Fifty-five and Stayin’ Alive.” Has some potential, no?

It’s great to have the online supports like this board & the others I frequent, including one that I started in a different venue. I couldn’t have made it this far without the encouragement and love of dozens, if not hundreds, of people, including some I may never meet in person. My prayers for healing go out to all the women here.

debrajo said:

If you are at peace, you are

If you are at peace, you are way ahead of the game.  I am still not at peace with things and probably never will be.  There are so many "what if's".  I still beat myself up for missing what little signs I had, then had to wait from July 26,09 to Dec. 3, '09 for the surgery.  Was not a happy camper at all.  I didn't really take time to research treatment centers or doctors since I am blessed to live about 90 minutes from M.D. Anderson in Houston, Texas.  I was able to drive myself on treatment days there and back alone.  Had very few side affects from chemo and radiation.  Lost the hair(no big deal) aches and pains(typical),moodyness(I'm moody anyway)Irritable (I am married and have six kids and nine grands),fatigue(I'm 61 and fat) so all in all not too different than everyday.  Anxizity and fear of the unknown(I don't like surprises either) and Houston traffic were the worst for me.  Oh, and my level of patiences with stupid REALLY went down!  The things at home were hard.  Read "Stupid" and "Husband" in the same light.  Had lots of issues with him...but that's been going on for 45 years.  You will get soooo tired of hearing "everyone is different" with the physical things, but it is true.  I had no bowel or bladder issues.  No stomach problems, no nausia, but the steroids put thirty pounds on me I DID NOT need, which I STILL haven't been able to take off.  I'm not sure about how positive I am, I resent the HELL out of this cancer, but so many of the ladies here have been able to talk me back from the dark side!  Please check back in with us and let us know what is going on.  There will ALWAYS be someone here that has been through what you are going through to help, guide and encourage.   Be at peace, breath deep, and smile...we've got your back!   Best, Debrajo

thank you!     I am very glad that strange circumstances led to an early diagnosis. Sugery is the 21st. oncologist was warm and comforting; smiled and answered every question and didn't seem to think any of them were frivilous/silly. He spoke with respect and treated me as intelligent. I too am fat but, he didn't make me feel negatively. I am a very blessed person and truely appreciate that. I am married 32 years this year to a man who has grown with me through the years. We have been pregnant 6 times with 4 wonderful adult children who all have terrific mates and our 3+ grandbabies. We also, have a foster daughter who has continued contact with us and she has 2 children who think of me as their grandmother. It is amazing that you HAVE patience with stupid; me...I never developed that (lol); it seems that common sense isn't really common and I just avoid those at every turn. lol We will see where this journey goes after the surgery but the dr seems optimistic at the moment so, I chose to hold that feeling. is this the correct thread for me on these boards? I will check back after I have more information/the surgery. Thank you for your blessing of peace, I will accept it and hold it dear to this process. I wish you peace of mind and spirit to continue your journey. 

icare46nu said:

thank you!     I am very glad

thank you!     I am very glad that strange circumstances led to an early diagnosis. Sugery is the 21st. oncologist was warm and comforting; smiled and answered every question and didn't seem to think any of them were frivilous/silly. He spoke with respect and treated me as intelligent. I too am fat but, he didn't make me feel negatively. I am a very blessed person and truely appreciate that. I am married 32 years this year to a man who has grown with me through the years. We have been pregnant 6 times with 4 wonderful adult children who all have terrific mates and our 3+ grandbabies. We also, have a foster daughter who has continued contact with us and she has 2 children who think of me as their grandmother. It is amazing that you HAVE patience with stupid; me...I never developed that (lol); it seems that common sense isn't really common and I just avoid those at every turn. lol We will see where this journey goes after the surgery but the dr seems optimistic at the moment so, I chose to hold that feeling. is this the correct thread for me on these boards? I will check back after I have more information/the surgery. Thank you for your blessing of peace, I will accept it and hold it dear to this process. I wish you peace of mind and spirit to continue your journey. 

Surgery done;took it all: uterus, tubes, ovaries, cervix. He saw nothing particularly suspicious so only took lympths around the uterus.

follow up att. today: Endometrian cancer grade 1 stage 1; no evidence in tubes, ovaries and cervix. NO evidence in lympths! Yeah!!

There will be no additional treatments (chemo or readiation) at this time. But....check ups every 3 months for 2 years befor clean bill of

health.  I am happy! My family and friends are happy! Time will go fast and I am positive in my long term health. sending strength and

peace to each of you!! Will check back here often and hope to see new positive updates often. Thank you for being here and open to helping

me on my journey! 

icare46nu said:

good news!

Surgery done;took it all: uterus, tubes, ovaries, cervix. He saw nothing particularly suspicious so only took lympths around the uterus.

follow up att. today: Endometrian cancer grade 1 stage 1; no evidence in tubes, ovaries and cervix. NO evidence in lympths! Yeah!!

There will be no additional treatments (chemo or readiation) at this time. But....check ups every 3 months for 2 years befor clean bill of

health.  I am happy! My family and friends are happy! Time will go fast and I am positive in my long term health. sending strength and

peace to each of you!! Will check back here often and hope to see new positive updates often. Thank you for being here and open to helping

me on my journey! 

So  delighted for you.  May you live happily ever after.

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.

Dani,

You are so young to have to deal with all thiss craziness called cancer.  I was 49 when I was diagnosed, just a few years older,  and STILL cannot wrap my head around having had cancer, and can't imagine what I would be thinking if I had been told this at your age! 

My favorite place to cry, and I still do occasionally, is in the shower where the water can just wash them all down the drain.

Please know you are not alone.  You have many sisters out here who would love to reach out and hug you, but please do not try and deal with this on your own.  Find someone who can listen to you.  If you were in the clinical trial reach back out to them to help you find someone you can talk to. 

I know all of us who have read your post are thinking and praying for you.  Please don't hesitate to reach out to this group.