TICK TOCK

[Jan214]

Well, I guess he finally found that expiration date.  My onc told me (only because I pushed him) last Thursday that with the 13 tumors in my liver and the thickening in my pelvic area (I have no idea about this) that I have between 6 & 18 mths. He says my liver is not enlarged and that the tumors only take up about 3% of the available space.  The largest tumor is 2.9cm.  I have been trying to absorb it, but it just doesn't seem real, like something that is going to happen to me.  18 mths doesn't sound so bad, because it is far enough out there to still be hopeful that something else will happen, but 6 mths sounds kind of soon and not very hopeful. At least that would get me through the holidays and one more spring of seeing my gardens wake up.  He said it all depends on my response to this doxil/carbo duo he has me on now.  I have done two rounds and after 4 we will do a CT.  I don't guess my CA125 came down or they would have called me.  It was not back when I went to chemo on the 6th.  If it is good news the chemo nurses call, if it is bad news they wait for you to call them.   In spite of rising CA125's & two yrs of straight chemo, I had been NED since my surgery in 2006.  I don't know when these tumors started.  My CA125 got down to 22 in June but has been rising ever since.  I guess I just have to hope that this combo works.  I know several of you have had liver tumors that have abated with chemo, but since these came up pretty fast, and there are so d@mn many of them, I guess he figures they will reappear quickly, so even if it works for awhile, I guess it won't work indefinitely.  It would be nice if it would work for awhile and in that while they came up with something new.  

I am feeling tired and sick from chemo still.  I was so paranoid about the Doxil side effects that I forgot entirely about the carbo side effects.  I couldn't figure out why I was running a low grade fever for a week and felt like I had a flu. I was platinum resistant so this is the first time back on it since the original.  It took me two weeks to feel better after the first treatment and this one has kicked my butt.  The Aloxi tip from you all has really been great, too bad they don't have pills for it because I started throwing up again yesterday.  At least it wasn't like the Gemzar.  I am glad I froze all of that fruit over the summer as it has been very good.  I have some weird awful pain in my right shoulder and upper arm and back and if it weren't for the relentless screaming pain (patches and pills are NOT working) I am sure I would be numb with shock.   We all know we are going to die, but when you have someone predicting your death, it sort of has a Twilight Zone, Outer Limits kind of feel to it.  

I guess my questions to you all would be: has anyone had this many liver tumors and had them go away, has anyone tried a platinum based drug with Doxil,  does anyone know what this "thickening" in the pelvic area is and why he isn't as concerned about that as the tumors? Has anyone gotten a remission after having 4 different protocols in 2 yrs AND having this many tumors?  I am sure you all can think of more questions to answer so feel free. My mind isn't working so well these days. I know I rambled nonsensically, which is one reason I haven't been on.  Not exactly straight in the head right now.  
Well, that's it. Thanks
Jan

[helenl89]

I luv the pam idea even better with he crazy glue. My prayers go with you. Please keep up the fight, we need you around to give us hope. For every day the sun shines I do pray that all of us can live a longer and happier life. 6 months ago I told my brother to let me please just go I didn't want to live like this anymore,but he wouldn't let me give up.I see my onc on the 26, and I too am terrified. I'm not sure I want to know. I don't think my body can tolerate another round of chemo, but if I have to I will find the strenght somewhere, just cause you people to inspire me to keep on trying. luv you and don't give up. Helenl89

[lvfrogs]

Jan,
I just wanted to say that I love your idea about opening up and just spraying Spam on your liver so those nasty tumors won't stick to it!! You made me laugh even as I feel so sad thinking of what you are going through.  Maybe we could come up with all kinds of crazy things to do to heal all our ailments.  Crazy glue works wonders on most things! We could crazy glue holes in the hearts, tack up bladders with it.  I see endless possibilities with Spam and crazy glue.  Love you! Colleen

[Flicka0459]

Jan,
I'm only one subway stop from JH.  Come on up!.  
I'm sorry I got mad, but you know how I get when people try to tell me what to do and give me boundries.  I'm not good with the "I can'ts" of the world. You and your stupid curiosity.

At your next chemo, just think about the time when we were in the back of the car and Chris' hand was hanging over the back seat...remember what happened next, right before you and I got in trouble?

They are working on getting Jack home soon.  I'm hoping before Christmas, although nobody has indicated that, but you know me, there's always hope. Keep praying for them.

Lisa

[Jan214]

To Everyone:  My onc only gave me that time because I pushed him.  For the last two years I have been NED and he has always told me that without ED my case was open ended.  He had really hoped that it would stay that way and that with constant chemo we could bombard the microscopic cells enough that they wouldn't have a chance to buddy up and become tumors.  Well that didn't work.  My onc is not one of those careless, arrogant, stupid no it alls.  When my friend Camille died in Feb he cried with me.  When Donna died, he cried with me and she wasn't even his patient.  He is the most kind hearted man I have ever known, so please don't blame him for this.  He really didn't want to tell me that and he kept stressing that it could turn out entirely different if this chemo works.  It is a new combo that has been rarely used so he just doesn't know.  That 6-18 mths that he gave me is based on the other chemos that have been available and how well they work or don't, on liver tumors.


Flick, my onc didn't want to tell me about that timeline thing.  I pushed him. I am not giving up but these tumors came up so fast that even if chemo shrinks them they will probably just come up quickly again.  I wonder if they can just open me up and spray pam inside my liver so the tumors don't stick to it.  Hey, it's as good as anything else they have.
You may see me sooner than you think.  If these next two chemos don't shrink my tumors and make a bunch of them go away, I am going to send my records to JH and you can come see me there.  Maybe I can be near little Jack.  Nope, he's gonna be home way before than.  

Love,
Jan

[crecco]

Jan and Flicka,
   Hey! If you need to, you can tell all of the funny stories you can think of about me. Even if you have to make them up! If it brings a laugh or even just a smile, then it was worth it.
   I volunteer to be the guinea pig if it will help in any way.
      Love you both,
       Chris

[justscore]

Miracles happen everyday and I pray for one for you.........
You are STRONG and you will continue to fight and tell that Dr to put away his crystal ball cuz you have other plans!!!!!!!

Heidi

[Flicka0459]

Jan,

Bullsh*t!  Now you pis**ed me off! Doctors don't know jack cr@p about most things.  I'm sure your doctor is very good and has guided you through some really rough times, but and yes there is a Butt (mine).  He/She can kiss my shiney white fat one, because only God can determine when it's your time and it's not time yet. I WON'T LET YOU.  And yes I am mad.  I'm furious that a doctor can say they are able to predict a time frame for when you are going to go.  You're not going anywhere.. As Ma used to say....It's the Law!  When you first told me about this, I accepted it and said it ***** to be you and it still does, but don't give up!  I know you're tired, but keep fighting.  I need you!  If nothing else to tell funny stories about Chris (not Crecco-Chris our sister Chris).

Love,
Your kind, gentle and not out spoken little sister.

[momofsandj]

Marty had a posting yesterday about research at MD Anderson that found a targeted drug that made the cancer commit suicide (of course they didin't put it that way but I like to say it that way -- die cancer die!!!!!) It's called PEA-15 -- I don't remember what the posting was but it should be findable on the MD Anderson website.  Just think shrink and so we will all --- visualizing tiny tumors and evaporating ones and sending more hope and love your way
Jeanne

[Jan214]

I know that the timetables oncs give are just a guess and he stressed that himself.  I am not a candidate for RFA because it really only works if you have less than 3 or 4 tumors.  The other stuff I will look into.  I know I suggest that everyone consult other hospitals and such, but my onc is on top of things.  He showed me his computer and how it is set up to "ping" him with all the latest from every major research facility in the world, which is how he knew about the combo I am on now.  As soon as the French study was done, he was looking for someone to try it on.  He is hopeful that this will work.  However, given the rate at which they developed, it is unlikely that they will go away and stay away.  He has mentioned a procedure that is still experimental at Cleveland Clinic and he is hoping to shrink these suckers enough to get me into that.  I don't know what it is because they have not made it public yet so he couldn't tell me.  He does have me on a very aggressive chemo, but like with others it takes about 4 sessions to know if it is working or not.  I have two more to go.  Thank you all for you care, concern, prayers and support.
Love,
Jan

[vegas2cr]

The timetables that doctors give is just plain WRONG.  In April of 07 when I was diagnosed I was told I would not make it through my chemo.. that I had less than 6 monhts due to the amount of cancer and the spread to my liver.. Well not only am I still here 18 months later but after 2 surgeries and the chemo and the radio frequency ablation I feel well...
That is not to lessen your circumstances but to let you know these damn doctors have no clue.. averages averages.. if I hear average again I will scream.  Believe in yourself and believe that you are going to beat this monster.. Please don't throw in the towel yet... Hey we have not met in person yet... soooooooooooooo.. There...is too much living you and I and others on this board need to do..
Your advice to others is always seek a second opinion.. well I am telling you.. seek more opinons... do not think for one moment you are out of options.. aned I am only talking to you the same way I know you would talk to me...Love Ronni

[CherBH]

Oh Jan,
I read this with tears in my eyes. I am a newcomer here, but you have so unselfishly reached out to help me, even in the midst of all you have going on. As I told you before, I am so humbled by your graciousness. I want you to know, that because of you, I have been a kinder and more giving person this week. It is amazing how we can touch other's lives and not even realize it. And you have touched mine. Thank you for that. I can't imagine the feelings you have right now. As others have said... no one can tell us something like that for certain; still, I know it had to be upsetting to hear it. Please know that we are here for you. I will keep you lifted up in prayer. In the book of Isaiah (26:3), it says: "You will keep him in perfect peace,
      Whose mind is stayed on You,
      Because he trusts in You. "
My prayer is that God will not only keep you in perfect peace, but will give you the strength and determination to continue to fight this thing.
Many, many (((hugs))) to you dear lady...
Cheryl

[crecco]

Jan,
  Know that you are in my prayers and that I love you too. I will also send you an e-mail.
Just to keep your hopes up, when I was first dx, my liver was described as "spectacular" due to the amount of cancer that was there.
  Love Chris

[cirella]

Jan, I love you.  Everything else isn't coming out right so I'll leave it at that and I will talk to you by email.

Love

[Teresa222]

I've been sad and confused about this since you told me earlier on the phone.  You are one of the "Rocks" around here, so this makes this terrible news even worse.  But, as the others have said many times on this thread: "No doctor can predict the future."

I believe from reading this thread, that you have many options yet to explore.

You are in my prayers, my friend.
Teresa

[momofsandj]

My heart and prayers go out to you.  All I can say is that the doctors can only give guesses -- they don't know your expiration date -- only the big guy upstairs does --- I've heard more stories about people outliving the dates the doctors gave them that I don't even think about asking the question.  My sister was diagnosed in 1990 before there was taxol or any of these other drugs.  She was stage 4 and was not given long to live.  She lasted 5 years which seems like a long time to me at this point.  Don't focus on the 6 months --- focus on sticking around as long as you can.  I am far from an optimist but I do believe that if you start to believe in these dates you act like it's coming and then your body follows suit.  If you say to yourself, "Screw that" and just keep going, maybe it will work.  You are so strong and have been so helpful to all of us, I just wish I could ease  your pain and your mind.  Please know that you have a very big hug, sincere thoughts for a reversal of this "growth spurt" your cancer is having, and prayers for your continued survival comming from me to you.

I wish there was something more I could do for you

Love
Jeanne

[marie3B]

I join the others in sending you love and support.  I don't think any of our docs know how much time we have.  I was told after my chemo did not do anything to the remaining tumors that I had an 80% chance to see Christmas of 2008.  I asked if I make it til then then what?  He didn't have an answer.  Is there anywhere you feel you would like to go for another opinion?  I like Chris' doctor.  Seems he gives her aggressive care.  I will pray they find something that will help you.  You are loved and I sure wish I could help.  Love,  Marie

[kaysgirl]

Jan,
I am praying for you! Don't lose hope.

[nyc lady]

NO DOCTOR CAN PREDICT THE FUTURE!!!! Remember that.  We are human beings, we don't have shelf lives or expiration dates.  As long as you have the fight in you, you will keep going.  Live each day to the fullest and live for today, not for tomorrow!!!!!  

The really bad thing is that when doctors say things like that, they tend to force us to lose hope.  A big part of fighting cancer is hope and if they take that away, than what.  Jan, you are not one to take what someone says as word, you are your own person...I DARE YOU to prove that doctor wrong.

Sending lots of positive thoughts to you and Cory!!!
Pam

[Tybear]

Hey Jan...you sound a lot like me - pushing my doctor's to give me a time limit! Why do we do this to ourselves??
I think about what your response would be to someone if they had written this and I know you would tell them that no one can predict how long we have left. Don't let one doctor's "guess" take the wind out of your sails...
How about abalation of your liver? I don't know much about it, but I remember Alan told me about it when they suspected disease on my liver. Maybe you could email him...
I know your feeling a little low right now...I hope and pray that this chemo your on does the trick for you and that you don't let this news get to you too much.
Love you Jan...
Becky

[ChrisP2236]

I am so sorry to read this and will keep you in my prayers.  I echo what Maggie wrote - we all love you,  Chirs P

[dawnlyn]

I am at a loss for words....You are in my thoughts and of course in my prayers.

Love,
Dawnlyn

[slee56]

I am really sorry to about your news. I feel that kind of feeling with me sometimes but am afraid to ask that question. I had my second to last chemo with the taxol yesterday. the chemo onc wants us to meet with the radation onc on the 20th and then made an appionment with a counselar (psychiatric)) after that appionment. I don't know about the radation as being doable as we live 2 hours from the clinic and it has to be done every day. the chemo nurse yesterday said that there could be help with housing places to stay druing treatment. It seems like in my case they don't want to give the bigger picture but want me to hang in there.
I guess we have to enjoy each and everyday that we have here. shar

[jlock]

I will keep you in prayer sweetie...what a horrible thing to have to hear!!  Like you said we all know it will happen eventually but to have someone put a time limit on it,sort of makes it more real!!  Hopefully the Doxil will work..it helped me and did give me 13 months of remission.....(((hugz)))~~~~Joanne

[lvfrogs]

Jan,
You are such a strong woman, a real fighter. I wish I had some words for you that would help, just know that the doctor is telling you that time frame, but that is all it is, a supposed time frame.  They may come up with something that will help in the next 6 months and even more so in the next 18 months.  I will keep you in my prayers and I am here for you, hugs, Colleen