Topic: My update not positive

Hello dear friends,

The cytology report from my oncologist was given to me yesterday at my appointment.  There are cancer cells in the ascites in my abdomen.  I am being drained about every 10 days, and that gives me relief, but it comes right back.  The doctor wants to try Avastin along with my gemzar and Xeloda but isn't sure Blue Cross will pay for this since it's usually used for breast cancers.  I keep praying for wisdom, courage and strength, but I just feel no hope.  Sorry so glum. 

Faith in you,
Sophie

Re: My update not positive

So sorry to hear you are having such a bad time, Sophie. Got to have attitude and that will give you hope. Then again, you have earned the right to feel any way you wish. Just know we are here to listen to you and that we are thinking of you and praying for you!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: My update not positive

I am so sorry to hear that report , Sophie - I will continue to pray for you, and all my friends here on this site - that God will comfort you in this, your time of need.

Joyce C.

Re: My update not positive

Sophie, you yourself are an amazing, brave and strong woman!  Look at what you are going through! Lainy is right...even if you feel like there is absolutely nothing left. put on that attitude, look up into Jesus' face and tell him you can't do it...you just can't do it anymore...and I promise you will find just enough hope to get you through even the next minute of the day!
We love you and will be praying for you!

Love,
Heather

Re: My update not positive

Dear Sophie,

I am really sorry to hear that things are not going well.  All I can add is that your will be in my thoughts & prayers too.

Lots of Love & Hugs,

Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: My update not positive

Sophie......I am sorry to hear this.  Several members on this site have used Avastin so I am hoping for you to receive approval also.  I am crossing my fingers and toes. 
Sending tons of hugs your way,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: My update not positive

Sophie,
I have offered before, but if anyone needs me to yell at their insurance companies for them, I will. If you get me next week, I will have PMS and I promise I become such a monster all heads will spin.

Seriously, I hope it gets approved and send you the best of luck.

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: My update not positive

Sophie --
I feel like I know you since we joined up here at close to the same time.

My every good wish and thoughts are with you. I know there are no right and wrong answers in how we call choose to deal with this awful illness.

I think that threatening to go the newspaper may be a good insurance company strategy -- no insurance company wants bad press.

Thinking of you,
Irene

Re: My update not positive

Hello Sophie, just wanted to tell you I'm thinking of you, as I've read many of your posts since I've been on the site.   I will continue to keep praying for wisdom, courage, strength and hope for you ..... & I'm sending you many hugs.

In speaking with an insurance specialist earlier re: payments for 'alternative' procedure, she indicated that each hospital works differently when it comes to working with insurance providers. A doctor can put together a letter of necessity, arguing for why a patient should receive a certain service, substantiating the necessity for the procedure. This can be performed as an appeal if the patient is initially denied. Just a thought....

Best to you,
Tess

Re: My update not positive

Sophie,

The great thing about this place is that you have permission to fully feel every emotion you have. You are confronting a terrifying thing, something that even doctors are terrified of and bad news can pack a wallop. I still hope, though, that amidst this bad and nasty cc you are able to find moments of joy.

Just for you, a quote:

Who will tell whether one happy moment of love or the joy of breathing or walking on a bright morning and smelling the fresh air, is not worth all the suffering and effort which life implies.  ~Erich Fromm

Patty

Re: My update not positive

Thanks to all of you for your kind words for my Aunt.  She may possibly find out tomorrow if the insurance company will pick up the cost for the drug to reduce the ascites.  I can't remember the name of it...Maybe avotan??  She was here visitng for the first two weeks of February and we had to go to the ER to get a drain.  THey are taking around 6 liters a time and has been drained four or five times.  It comes back very quickly and she is very uncomfortable.  If this is approved for her it could make all the difference in her quality of life...I have been calling my Aunt Sophie and reading the posts to her and she gets on the site when she can.  Aunt Sophie is also critically low in potassium and has been at the hospital to have IV"s to bring it back up where it needs to be.  Today two nurses from her doctor's office told her she is a favorite patient and gave her a picture frame that said Grandma on it.  This really touched her and made her day.  Thanks again to all of you for the support.  I will keep you up to date on the insurance company's answer.  Some good news would be great!  You are all very caring and special people to offer such support to all who need it. 
Good thoughts coming your way,       Hollie

Re: My update not positive

Hollie.....thanks so much for keeping us abreast on Sophie's condition.  I have been told that Paracentesis (draining of ascities) can cause Potassium Levels to drop.  I am hoping for Sophie to feel better soon.
Please, let her know that many good wishes are coming her way.
Hugs
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: My update not positive

Hi Hollie:

It's so kind and supportive of you to provide updates on Sophie's behalf. Please know we all love her and are thinking of her.

Irene

Re: My update not positive

I hope that they can get Sophie's medication approved quickly so she can be more comfortable.  She sounds like a wonderful, dear woman.

Re: My update not positive

Hi Hollie, please tell Sophie that she's one of our favorites too & that we are sending her a million hugs!

-Tess

16 (edited by JeffG Fri, 27 Feb 2009 06:14:05)

Re: My update not positive

Hi Hollie,  Sorry to hear Sophie is having so much trouble with fluid retention/acites.  I was drained 3 times but not as much as Sophie. After the 3rd time things seemed to have stopped.  I had the same problem with dangerous potassuim levels as well.  In fact the had to make up a concoction and feed it to me by way of table spoon.  I did do something of which I did not tell the doctors at the time and that was take Ibrophen anti inflammatory tablets OTC 800 mgs every 4-6 hours for one week and that appears to be when my fluid build up stopped.  I would certainly run that by the doctor first though.  In fact I have had 2 different Oncologist recommend taking for pain in the liver caused by inflammation.  Just an Idea for you all to ponder Hollie.  As if you don't have enough as it .  There were a lot of little things I tried while I was taking chemo.  6-8 mgs of steroid per day may help as well.  Sophie, wish and pray this turns around real quick for you.  Hollie your a terrific loving Niece.  My Nieces just keep sending joke after joke after joke.  I tried to send a normal everyday e-mail and the replies are always jokes.  I even mentioned How I would like to know how all is going on in their lives ,kids ,work, husband.  I love them! I guess they just can't get off the joke wagon, to convient.  A special thanks for being there Hollie , I can really sense how much Sophie appriciates and loves you.
God Bless,
Jeff G.

Take it to the Limit,One More Time! (Eagles)

Re: My update not positive

Just adding my thoughts and prayers. I hope you get that answer from the insurance company soon. Thanks for keeping us informed Hollie and please send my love to your aunt.

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: My update not positive

Hi...So things are not too good right now.  My Aunt is all alone for a week now.  She is to the point where she really should not be alone at all and we as a family need to get this figured out quickly.  I live 8 hours away and her daughter is 3.5 hours away.  She has neighbors and a few friends that pop in to say hi and check in, but I feel it is crucial to get a plan in place.  Not only for physical reasons but also mental.  She is so down and voices that she would like this to be over.  It is just killing me.. The good thing is that she definatley still loves a good laugh and really gets a kick out of some of my stories.  She just lives to hear stories when we talk on the phone. 
At this point the initial answer for the medicine has been denied.  The doctor is doing what Tess mentioned and I pray it is approved ASAP!!!  If it is not, due to the misery of the ascites she will not be continuing on with treatment.  Only drains to relieve pressure.  This is becoming more stressful by the day and I know you all understand.  You are all amazing people.  I mean it!  I feel your love and sincere concerns and it is just huge.  So many of you have suffered such loss and are so supportive and strong to people struggling. 
Jeff,  I wish my Aunt would take the ibuprofin and I am going to encourage it.  Thanks so much for the info and just know you ( and all here) are always on her mind and asks me for updates and prays for you all.
Thanks and love to all,    Hollie

Re: My update not positive

Hi Hollie and thanks for the update. Please tell Aunt Sophie that since I never heard from Oprah I sent the letters to Barbara Walters. Its been about 3 weeks now. Sophie was so hoping someone would give us an ear. Also tell her I am thinking about her and sending prayers her way.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: My update not positive

Hollie.....thanks so much for keeping us informed about your Aunt Sophie.  Please, tell her that she is missed on this board and much loved. 
I recall Sophie writing about her living alone and I agree, this is the time when someone should be with her or, very close by.  What a wonderful, caring, and kind Niece you are.  I know that you will come up with the solution best for all.  I am hoping that Jeff's idea of ibuprofin and possible steroids will be agreed to by the physician and I so much hope for Sophie to be more comfortable.
All my love,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: My update not positive

Hi Hollie,

Thanks for the update. I agree that Sophie needs someone with her as much as possible right now and hope that between you there is some way to work that out. My best to all of you.

Love & Hugs,
Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: My update not positive

Hi Hollie,
Sophie is always especially in my prayers when I pray for everyone here on the cholangiocarcinoma board.  I hope you figure out something that will work for all of you and will allow Sophie to be taken care of.  I live 18 hours away by car - I wish I was closer to help out.
Loving you all,
Lisa

Re: My update not positive

Hollie, I'm so sorry Sophie and your family are going through this.  You and Sophie are both so special.  I hope you've been successful in getting a plan in place.  Hugs and love to you.

Carol

Re: My update not positive

Hi everyone,

I have read and re read all your posts to myself and my Aunt Sophie.  She is so touched and says thank you to each one of you for your concern and support.  At this time the medicine is still not approved and she is still waiting.  I am praying it is approved because if it is not she will not fight the battle with chemo any longer.  THe treatments have already stopped but she would consider more treatments if there was something to do for the ascites.  She will be drained again on Tues.
For now we are jsut winging it as far as who is with her and where she will be.  Her daughter and little grand daughter are there now so that gives me much comfort.  They will leave on Sunday and then my sister is going down for a visit and I am hoping my AUnt will come up here to stay in Truckee again for a month or so.  SHe has two beloved pets that need new homes so it is hard all the way around.
Just thought I would touch base and say Hi.  We have six feet of fresh snow to play in here in Truckee.  My kids have been out on snow days all week and  it is beautiful but a lot of snow to deal with.  I will be in touch as soon as we hear something on the avastan.
Jeff, she has been trying the ibuprofin and we will see if it helps.  When she goes to see her doctor next she should mention the steroids.  Also thanks for the nice words on me being a good niece..My Aunt has been so suportive and amazing to me that I feel more like she is my Mom.  We really have a great relationship and she is also super close with my two kids Ben and KAte (9 and kate is 7)...Hope you all had a nice day and will have many more to come.  Love,  Hollie

Re: My update not positive

Thanks for keeping us informed. I say a special prayer for your aunt everynight that she gets that medicine approved. Is she having problems finding homes for her pets? If they are special breeds, there are often rescue organisations geared specifically to those breeds. They usually go to foster homes while they are looking for placements, so they get to avoid being in cages at the shelter. But saying that, we have a shelter here which uses foster homes regularly.

I hope things smooths out for your aunt. Please tell Sophie we are all thinking of her and sending her the most positive thoughts.

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope