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Roena's picture
Roena
Posts: 20
Joined: Dec 2012

Teal greetings to all,

I hope I have finally found a way to share my "story".  Had an annual GYN exam in August, 2011 with no suspicious findings including a clear PAP.  The only comment was that there was a large fibroid (uterine) and a small fibroid on the left ovary. On a motorcycle trip I noticed that I had abdominal swelling that came and went - no other symptoms or pain.  As someone who was overweight to begin with, I figured it was just more of the same shifting around.  In March I went to a family "do" in England and noticed I was uncomfortable sitting on the flight (again thought nothing of it as it went down).  Just before returning to the US, I looked at myself in a mirror and I looked like I was ready to deliver twins.  Upon returning home I made an appointment with my Internist who initially diagnosed a hernia but insisted on a CT scan (without contrast - too hard on my kidneys).  That night I got "the call".  We had an office conference the next day along with all kinds of blood work and a referral to a Gynecological Oncologist in Charlotte NC.  He saw me Thursday and my surgery was Friday March 30th.  Total hysterectomy including omentum.  Post surgery, he conferred with my sister and boyfriend saying he got as much as possible but there were still microscopic cells and lymph node involvement but chemo would take care of it. 

I had to wait for all the healing to complete before the Oncologist (different doctor) started my chemo - Taxol and Carboplatin - 6 rounds.  That started in May.    I knew all the potential side effects (my hair was gone after the first round - and that hurt more than anything else).  Veins collapsed and a Power Port was implanted on June 5th and round 2 went through the port.  I kept a diary for a while of my side effects and knew that by the third day I would experience the flu like SX but all in all, in hindsight, it wasn't bad.  No nausea.  Prior to starting chemo I had over 3000 mL of fluid drawn off (ascites).  RBC took a nosedive as did WBC but we carried on.  After the 5th round I had two units of blood to support my failing RBC.  We delayed my last chemo for a week just to allow my counts to stabilize.  Hospitalized in August for PE and two more units of blood.  My CA125 went from 917 post surgery to normal in very short order and everyone was elated.  PET/CT scan in September was fine - showed no changes or potential problems.  Three month follow up scan 8 days before Christmas showed "subtle changes" in lymph nodes.  CA125 rocketed up to 314. My GYN Oncologist (surgeon) and Oncologist conferred and told me that it was back and there was no cure, only remission because I was diagnosed at a late stage (stage IVc).  Personally, I don't think that cancer is ever "cured" but goes into remission, long term or longer term remissions.  I'm starting Gemzar and Carboplatin this coming Friday.  I say, BRING IT ON!  The oncologist did acknowledge that eventually the cancer will be drug resistant but has great faith in Gemzar. Before we started the first rounds of chemo, my oncologist wanted to know if I wanted to know my survivability.  He didn't sound too optimistic this last go round, but will fight for me.  We're no where near getting ready to hang up the towel and predictions are just that.

There has been a lot of information on alkalinizing diet and restricting carbs.  In animal medicine, cancer just loves carbs, so my thought is that eliminating as many carbs as possible is a good thing for me.  Any thoughts?

I suppose I'm still just a little in shock and somewhere between shock and acceptance.  Little or obscure symptoms is what shocks me most. As I wish all of you good luck on your continuing journeys, I hope to receive the same.  There are so many people praying for me, it's a little embarrassing; never knew how many people I came in contact with.  The downside for me right now isn't my personal fight, but my sweet dog, April, fending off stage 1 sarcoma and 18 radiation treatments.  Sucks.

Thank you for listening.

 

 

 

 

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

Your attitude sounds great.  I am so sorry for this diagnosis and recurrence so soon - it sure is shocking!!  I'm curious - what type of cancer do you have? UPSC by any chance?

You seem to be putting the best face on the situation.  Continue marching on with hope.  YOu have my prayers.  I've been dealing with UPSC for 4+ years and now in treatment with second recurrence.  It does get "old" and wish treatment was over and successful.  Those periods of NED (no evidence of disease) are truly heavenly. 

So sorry about your sweet dog.  I hope she has good response to treatment too.  It's interesting that you are going through this together.  

Your idea about diet is good.  There are many threads/discussions here about this - you can search the old threads.  Many good books on the subject.  One I'll recommend is Anti-Cancer: a New Way of Life by Sirvan-Schreiber a doctor with cancer himself.  He talks about diet and other things to help. 

Stay active here.  There are wonderful people to help listen and hold our hands along the way.  Hugs to you. 

Mary Ann

Roena's picture
Roena
Posts: 20
Joined: Dec 2012

Hi Mary Ann,

My DX was Metastatic Serous Carcinoma - everywhere it seems.  The Histologic type was Endometrial Serous Carcinoma, High Grade (no FIGO Grade).  Lymph/Vascular space invasion.  There were some additional pathologic findings of Metastatic Serous Carcinoma involving uterine serosa.  FIGO IVB.  BRCA counseling was suggested but doesn't make much sense.  Involvement seems to also enjoin bladder peritoneum.

I did look into Sirvan-Schreiber and like what I see.  Even though it may be a day late and dollar short, I cut most carbs.  I wish my oncologist had started the new chemo immediately instead of making me wait.  I suppose my greatest fear is that it won't work but I have to get that idea GONE.  Yes, we were all shocked about the return of the beast but the more I read, the less uncommon it seems to be.  Whoopee, in remission for about 10 weeks!  Wow!  I'm disgusted that my body has betrayed me so badly but I fully intend to keep marching.  There is nothing as satisfying for me as a good fight. I have a family member who has been fighting for the last 4 years - everything excretory was externalized, then he developed bone cancer but the beat goes on and he continues to march, too. 

Thank you so much for asking about April.  She's 13 and just the sweetest girl.  She had 18 radiation treatments and now has another lump.  The radiation was only meant to stop this very slow growing sarcoma from growing so whether it's doing it's job we find out Wednesday after I see my doctor.  My knowledge of animal sarcomas is pretty extensive and I hate that she's going through this.  I have a house full of animals and a 16+ year old cat who is hanging on by a thread.  My family wants me to divest myself of my furry supporters; it's hard. My boyfriend is screaming about me updating my will and power of attorney (not to include him but to make my sister aware).  Slowly pulling out of this tailspin.

Roena

 

 

NorahS
Posts: 93
Joined: Dec 2012

...you are going to be marching for quite a long time yet.  Smile

 

And I do hope that April can keep marching for a while longer too.

 

Happy New Year, Roena

 

PS: Love, love, love, the blue hair  Smile

  

 

Roena's picture
Roena
Posts: 20
Joined: Dec 2012

Happy New Year!

April went to see her radiation oncologist today and her tumor is shrinking and the radiation damage to her skin is almost healed.  The vet is thrilled and there is a small possibility that it may yet be removed surgically.  He said that the average post radiation survival is 1 year but he feels that she will be around for a lot longer given her general condition.  We're looking forward to walking in the upcoming walks and races!  She will be wearing a teal and pink ribbon!  Small victory for a sweet dog.

 

Roena

HellieC
Posts: 431
Joined: Nov 2010

Keep marching Roena.  You are not alone.  There are quite a few of us who have had multiple recurrences (I am on treatment for my third) and are still here.  Of course, the statistics don't make for comfortable reading, but as has often been quoted "you are a statistic of one".  Let's each of us buck the trend and keep on marching down this road.  Hopefully, each time we need treatment, there will be something new appearing in the armoury for us to try. 

With kindest wishes
Helen

Roena's picture
Roena
Posts: 20
Joined: Dec 2012

Thank you, Helen and Happy New Year. Many happy wishes for a cessation to your recurrences and three will be your lucky number!

 

Roena

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

I'm so happy that your baby is responding well to treatment.  She has a great role model in you.

Now that teal ribbon is beautiful - however, I believe this is color for ovarian, who I have no beef with except they do get all the treatments that many of us uterine folks need and want but don't get until we are deemed worthy somewhere down the road. 

Just FYI, color for uterine is ....... peach!!  Ain't that peachy!!

Best to you,  Mary Ann

Roena's picture
Roena
Posts: 20
Joined: Dec 2012

I can get a peach colored wig!!!

The sad fact is that notoriety wins.  For years and years, breast cancer was in the forefront.  I've only just begun seeing TV ads on gyn cancer.  According to my two oncologists, ovarian and uterine are very similar in presentation (I had no real presentation) but uterine is the "better" cancer to have.  Now THAT's a RIOT!

We have GOT to push forward with information and treatments.  Contacted Duke and MD Anderson - forwarding all reports to Duke.  Starting Gemzar tomorrow.  I may be wrong but Anderson will see you as a court of last resort once you get to a certain state to go into clinical trials.

Roena

 

 

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