Update on Me & Lots of ?'s

Well shoot!!!  It ain't lookin' good.  Ever since my initial surgery in Oct 2006 I have been on one chemo or another with some small breaks in between.  The reason I could get away with a few breaks between drugs has been that there was NED just rising CA125 tests.  However, I had a CT last Thursday and when my onc called me himself on Friday I knew he wasn't good news.  I have not seen the scan yet, but he says there are numerous spots on my liver and in the pelvic area.  I don't know what "numerous" means or exactly what "spots" are either.  Is there a difference between spots and tumors or is using "spots" just a way for the oncs not have to say tumors?  Can these spots be removed surgically or is chemo really my only option?  I know so many of you have been down this road so I would really appreciate some feedback.  Who has had these "spots" on recurrence go away with more chemo?  I am to start chemo again on this Thurs. the 9th, and he will be giving me Doxil (I am TERRIFIED of that one) and I don't remember whether he said Cisplatin, Carboplatin or Paclitaxel, but it will be one of those also.  Has anyone had those kinds of combos?  I know most people just get Doxil.  

Just for a recap I have stage 3c and the cancer was contained within both of my ovaries except for one HUGE lymph node in my left left up by the pelvic area.  I did not have any signs of cancer in the omentum, stomach washings etc.  My onc said I was lucky in that only 20% of women have the cancer contained inside the ovaries without something showing up on the surface or in the abdominal cavity.

For the first time since this whole mess started I am really afraid.  Not so much for my life, but of this killer combo.  A lot of you know how over the top sick I was on the Gemzar and I am so afraid that taking these two together will just leave me sicker & wasting away.  My mom died of this in 1964 when she was 38, and as a 7 yr old watching her waste away well, it was just horrifying.  I know things have come a long way but still....

I have to go have my MUGA scan at 10:45 so I better get ready, but I would appreciate all the feedback I can get.
Thanks,
Jan

[ireneo]

I don't have the experience to share with you. But I have lots of love and I'll send it your way. Let us know how the MUGA scan goes. I think I like the idea of "spots" because that means they don't know yet what they are. When they say tumor, that sounds more ominous. Hugs,

[JC145]

I don't have the answers you want .. just wanted you to know I am praying for you and praying the chemo is not too harsh and does the trick.  I do believe "spots" are "spots" as opposed to tumor.  God Bless You, Jan ...
Judy

[nyc lady]

Jan - I am sorry to be reading this.  I do have a story about someone that I know and adore...she was stage 3c, 3 years ago....she did great on carbo and taxol and was clear for 3 years...they did a CT Scan and there were spots on her liver and around her colon.  They did a PT Scan and it was decided that both locations were cancerous.  Well they operated on her, the area by her colon, although it lit up on the PT Scan was just scar tissue and twisted bowel.  The spots on her liver were OvCa.  They did an abalation and she is back on carbo/taxol....about 2 weeks ago, they did a CT SCan and found new spots on her liver (this is 3 months after the other surgery and she has been on chemo)...they did another PT Scan and this time she did not glow, so we are believing it is scar tissue.  So, yes, surgery is an option and it can be successful....if you want, send me a private message and I can put you in touch with her if you have more questions.
You know the drill...as long you as have the fight in you....you need to keep fighting.

Love,
Pam

[withe]

I know your scared starting a new to you chemo. Each and every time I start new ones I have anxiety big time.. it is the unknown reaction because reading side effects is not ever the same as having them. So sorry you have to deal with this.
As for spots, my onoc description is like chicken feed, little flecks here and there, if you are unsure ask the DR to clarify.
Seems to me I have seen posts on here regarding a doxil treatment kit available on their website ?  I will hold you in my thoughts. Withe

[ChrisP2236]

I'm sorry to hear this and just want you to know I am thinking of you and Cory and praying for you both.  Love and blessings, Chris P

[Angie_Lou]

Just want you to know, your drive to fight your battle has kept many of us (at least, me) to keep fighting ours.  I understand situations do get us down; there were several months in between my first comment and the present because I was so effing depressed, I couldn't get myself to log on.  I've sensed this has been happening to you, too.

Keep fighting girl and if you need a physical hug of reassurance, you just tell your wonderful husband to hug you for all of us as many times as you need it.  I'll be going to a local networking in my area this Thurs and I'm printing out what you have written.  If anyone there has something to add to help you, I will forward the info to you by Friday.

With love & prayers for your well-being, Angie

[junamgen]

Sorry about not so good news of your scan. Maybe surgery for pelvis spots and ablation for liver spots is an option just like Pam mentioned. Whatever you decided I will be 200% behind you!


Peace and Love

jun

[silver&gold]

I hope somebody can offer you encouragement through their experience Jan, other than that It just sounds so feeblefor me to say I wish you well and know that you are a strong determined person, but I do and will be thinking of you and hoping that its not as bad as you are anticipating.

Love Angie

[cirella]

Jan, I pray for this to not be as bad as it sounds.  Ugh...everything I go to write I just erase.  =... |

I love you and am praying for you.  
~L

[marie3B]

I have been doing the same thing as cirella above. Writing and backspacing to erase.  That is because I can't think of the right words to let you know how much I wish...........there I go again backspacing for lack of words.  I support you in your fight 100%.  I will pray for good results with minimal side effects.  I have no experience with Doxil.  Cisplatin for me was I/P.  The I/P part was awful, but the Emend helped the cisplatin side effects.  Taxol I/V for me was pretty easy.  If given the choice between Cisplatin and Carbo, I would choose carbo.  It is easier on the kidneys than Cisplatin.  Call me anytime to talk or if you need anything.  I am sorry that you are having to deal with this. Love, Marie

[yrrek]

     I have no experience with Doxal.  My combo was taxol/carbol with  a one time IP of cisplatin.  My cancer too was contained to the ovaries but found in the washings as well.  I am praying and thinking and sending all my best to you.  We are all fighting with you and are here for you.  Love, Kerry

[SimplyStar]

keep fighting girl, Leslee had Doxil for 9 months and was able to work  most of the time, except  for the f/h  thing, read up on that  and prevent it from happening.  I love you hun, and send all the best wishes for you to conquor this.   Marty

[Sandymac]

Well, (I've also backspaced 3 times)... I just want to send you all the best positive  thoughts that I can come up with along with hopes and prayers that this is lots better than you are feeling it is.

Please know that I care...
Love,
Sandy

[gma718]

Please dont give up the fight..turn your fear into feistiness and know that even though I have no expereince with anything you are going through..my prayers are with you...I am so sorry you are going through this...I love you and care for you and will always be here for you...Love, Gia

[jlock]

I have been on Doxil and did very well. Doxil is worse with heat so having it starting in the fall is a good thing.  I did not have it mixed with any other drug though. It also gave me 13 months remission..which is my longest remission yet.  As far as the spots go that is something you should ask the Onc...I think it depends on the size as to whether it is better for surgery or chemo.  I'm on my 3rd recurrence and only have spots..that are treated with chemo.  I will keep good thoughts for you and prayers as well..(((hugz)))~~~Joanne

[crecco]

Jan,
  I know that you are afraid of starting the doxil. But please try to go into it with an open mind. If you remember, I have had spots on my liver the whole time. Between the chemo and the few RFA's that I have had, we have been able to keep them under control and they have given me no problems. My last PET scan even showed a few more but they are small enough that my onc is not even going to worry about them just yet, we will wait and see how the etoposide is working. So hang in there Hon.
  Love Chris

[TrudieC]

Jan, I hope you are feeling a bit more positive with some of the advice here.  I wanted so badly for you to have some good news here.  Fingers are crossed and prayers are being said for this to turn out as positively as possible.

Much love, Trudie

[OzBron]

Oh Jan,

I am so sad. So much bad news for so many I have come to feel so much for.

My thoughts are with both you and Cory. Get those questions written down so you can get answers. Perhaps by doing both chemos the can drop the dose of the Doxil so you have less trouble/side effects.
I don't know what else I can say. Just know many people are thinking of you!
Bron

[crybaby1961]

I know my mom had spots on her liver and they treated it with chemo, I'm not sure which one, but she did have a good response to it and I believe it was her second occurence.  My thoughts and prayers are with you to be well soon.  I've never communicated with you directly but have read your postings and know you are an inspiration to so many on this sight.  God bless and be with you.

[Lafnatitall]

I'm sorry you are going through this!  I haven't had any of these combos but was offered a choice of poisons for this second go round...the doctor here in San Antonio that I'm going to now doesn't think I really went into a full remission the first time and feels this is due to me being platinum resistant.  My choices were Doxil, Topotecan, Etoposide, and Gemzar...I chose Etoposide Oral.  When I had ER gallbladder surgery, my "recurrence" was discoverd...it had not shown on a CT or a PET.  There were 'spots' on my abdomen, liver, diaphragh, and gallbladder.  The doctor described them as being like someone had sprinkled coarse sand in these areas.  So far the Etoposide is bringing down my numbers...slowly.  I continue to pray for you...we're all heroines you know...the mere fact that we are willingly putting a poison into our bodies NOT knowing how our systems are going to react...THAT's what FIGHTING is, my friend...and you're doing remarkably well...

Rhonda

[Mary 53]

Jan, I just saw this and all I can say is that I wish I could fly out tonight....YES.... TONIGHT so I could give you a hug. So, for now, a cyber hug will have to do.

Thinking of you and sending love and a TON of positive thoughts your way.

Love ya,

Mary

[gah_70]

I've had the same experiences some of the others have had.  First off, my recurrance, like Rhonda's, was discovered during gallbladder surgery.  It was described to me the same way...spots or nodules scattered various places around my abdomen, on my intestines, and my diaphragm.  I believe the different chemos I had up until this past April probably helped keep them from growing, but they didn't get rid of them completely.  I had Doxil as a single agent, but only because I told my doctor (the one from home who is into some kind of "chemo-torture") I wouldn't take anything else with it.  He did manage to slip a little more Gemzar in on me...but that's another story.  Anyway, I didn't have a lot of trouble with Doxil, either.  Just make sure when you are doing the infusion, put the cold packs on your wrists and ankles.  It really does help slow down the circulation into your hands and feet so that maybe the H&F syndrome won't be bad...or won't happen at all.  I was scared of it, too.  Maybe I was just lucky, but you know not everyone gets all the side effects from every chemo.  I'm hoping you are one of the lucky ones, too.  By the way, the oral medication I am now on has helped more than anything, and the spots have finally started to shrink.  I know you and I have different types of cancer, but chemo can help without having to have more surgery.

I'm always thinking of you.

Love,
Gail

[Janet535]

Hi Jan,

I'm not sure if my experience will shed any light on what is happening with you but I hope it is of some small comfort.

I was dx with Re-Current OvCa, Stage 3C. My onco told me after the surgery that it was termed Re-Current because even though they had done major surgery - radical hysterectomy and bowel re-section and removed some tumors around my liver and kidneys there were "spots" remaining. These :"spots" were Not tumors but tiny spots of cancer that were to small to be removed surgically and if they had even attempted to, it could have caused damage to those organs.

I had my surgery in November 2007. Due to other complications I couldn't start chemo until January 2008. I was put on the carbo/taxol combo but only did 3 rounds of that as it wasn't working for me. I then went onto a clinical trial (which i am still on). I have scans every 8 weeks and have done so since commencing chemo and the "spots" have Not grown larger. My onco did say it is possible for the "spots" to clear up with chemo but in my case that hasn't happened but then again thats not un-usual for some one that has Re-Current OvCa.

From what i gather our dx is some what different, but it appears you have had better success on chemo than me, so hopefully this new round of chemo will clear up your "spots" or at the very least stop them from spreading or growing into a size that would be considered "tumors".

I hope this has been a little helpful to you. I can't comment on the chemo aspect of your dx because i haven't been on it or know much about it.

I sincerely hope the new chemo regime works for you and wish you all the best. Kind regards.....Janet

[jamiann5]

Hi Jan,
This sounds very familiar to my mom's situation.  Mom was dx with IIIC in april or 07.  She had 6 rounds of cisplantin/taxol IP and IV ending in Nov of 07.  In May we found out that her cancer had recurred with "numerous" spots in her liver and peritoneal area.  She had NED, we found out after a routine abd/pelvis CT scan.  She then went on carboplantin/gemzar.  After 3 rounds of that, we found out that none of it worked and she is plantium resistant.  She is now on avastin infusions every 3 wks and cytoxan by mouth daily, and methotrexate by mouth twice daily twice a week.  She feels great and her CA125 is falling.  She will be getting another scan next month.  We were told that she would not be a surgical candidate due to having spots in her liver and abd.  if the tumors were contained to just her liver, they would consider a partial liver resection.

You will have to keep us posted.  I will be thinking about you.  I can only imagine how you are feeling.  Keep in mind that there are SO MANY treatment options that are out there.

love,
jamie

[fungirl1011]

Jan, I just want you to know that I am thinking of you.  As you know, I have no experience in any of this, but I support and pray for you all the time.  Hopefully things are not what they seem and your doctor just has not explained it to you very well.  I will be sending up extra prayers for you not to have any bad side effects from your new chemo.  Jan, you are such a stron woman, and I know that you will fight this horrid beast with your whole being.  Stay strong and keep the positive thoughts going.  Love you lots, Kasie