1 (edited by Lainy Fri, 28 Feb 2014 15:18:11)

Topic: Not So Good News Today

Had an appointment with my ONC today and looks like my 5 year cancer (I will not dignify cancer with a capitol C) free is over. 6 months ago I was clean and as of now I have a tumor (cancer) where the other GIST was. We do not know yet if it is a Gist or another type. It is growing quickly and is already 3 X 6 CM. The ONC also feels it is obstructing my intestines which could be why I am not healing properly from the Colitis. She is calling the Surgeon who did my first GIST and I trust him so much what ever he says works for me. I will have a ton of appointments this month and Robin will go with me.
I know I will probably have to do that surgery first then after I heal do the other tumor with is benign.
The ONC also is suggesting Gleevec (very expensive) until surgery to hold it at bay, it is the ONLY RX for a Gist. Again she will confer  with Dr Runfola, and as she said now they are my team. And you may wonder why I don't have a social life! Wow, I just had a thought that this cancer is what could be making me so fatigued.

I have to admit the Happy Pills did not work at the ONC but I am OK now. Surgeries do not scare me its just that is so much to digest and I don't eat that much anymore.

   That's the whole story.  Love Me

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: Not So Good News Today

Oh, Lainy,
Enough is enough! I hope the surgery goes well. Get that nasty thing outta you! Praying for some quick surgeries and easy healing.
Tell Teddy to watch over you. Have him put in a good word that you are still needed down here and healthy, for what would we do without your daily posts?? We miss you when you need to take time off.

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: Not So Good News Today

Lainy,

Please know we are thinking of you this day. You are such an inspiration to all of us. We know you will do everything in your power to beat this new growth. We wish you the very best.

Carl and Lynn

Re: Not So Good News Today

Kris, I want to ask you something. Teddy always tells me in certain ways that he is watching out for me so what kind of watching is this? I really have not caught my breath yet on the cancer tumor. I mean 5 years and then pow! One Grandson coming home tonight for the weekend from U of A so Robin and 2 of the boys and I oh and Robert are going out to eat tonight. She already told me she wants to go to every Doc I see this month. I am blessed. We now both feel I have not healed further from the Remicade because of the obstruction I may have! So I guess some bad things can bring about good things.

Thank you Carl, I just take a day and I will be fine tomorrow. I may even send for my Sicilian drama queen sis in law, Maria to come stay with me. Have not decided if I am better off with her or being alone! I like to be alone, but we get  along like 2 old peas in a pod. Hope Lynn is doing well.

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: Not So Good News Today

Wishing you the very best, Lainy.  You provide so much support to everyone on this board.  Now it's time to focus on taking care of yourself.  Remember there are many people here who care about you.   Linda

Re: Not So Good News Today

Lainy,   

If it isn't one thing it is another for you of late.  My fingers and everything else are crossed that all will go well.  I agree with Linda.  It's your turn now and you need to lean on your family and all of us here and focus on you.    Take care of yourself and know we are all pulling for you.  I know Teddy is right there supporting you too.  smile 

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: Not So Good News Today

Thanks LindaR and Darla. I went to dinner tonight with my Daughter and her BF and a Grandson who came in from College for the weekend. Feel so much better. What ever the news I usually get over it in a day and get on with what has to be done. Now I know what it is like to be hit with that bat! One good thing is I am hoping that if the tumor is causing blockage that could be causing my problems with the colitis and why I am not getting better. Another
thing is I was thinking that the Surgeon who removed it the first time and who I will be using this time may also do the other other tumor even if they said I need a Neuro surgeon. OOPS maybe not. Thanks girls.

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: Not So Good News Today

Lainey,
What a blow! I am so sorry about this awful development. So glad you have loving family nearby to help you through. Hang in there dear Lainey.
Willow

Willow

Re: Not So Good News Today

Thanks Willow. I have a fabulous daughter 15 minutes from me, I am so blessed. She insists now on going all Doctor appts from here on. She also wants to stay with me when I get home but honestly I like healing alone. We shall see. It is what it is now time to fix it. Teddy knows and he is playing with my hair, yes he does that. Guess he wants me to know he is with me. OMG feels like cobweb on my face! LOVE it!

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: Not So Good News Today

Oh Momma, really sorry to read this news from you this morning. Yet another thing for you to have to deal with and worry about and you so do not deserve this at all! I think that your onc is right in that this could have hindered your recovery from your colitis and no wonder you have been feeling so tired all of the time.

You know that my fingers are crossed for another successful surgery here and I hope that your team can get this sorted asap. And if you have such faith in your surgeon then I do as well! A ton of positive thoughts are boinging their way over to you from me.

Real glad to hear that Robin will be going with you to every medical app and I know that the kids will be there with you as well, what a great team you have around you! And I know that T will be with you as well as always.

Luv ya loads,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Not So Good News Today

Hi my Son from another Mother. I got our email and answered and you are right as Teddy has already been here.
I was computering (ha) trying to get tired to sleep and there it was. When Teddy first got sick with cc I asked him how will I know after he is gone that he is trying to touch me. We decided on a soft touch to the cheek. Well he has not mastered the cheek yet but he does run his fingers around my forehead and hair. Just the lightest touch like a cobweb and he has been doing it pretty much all night here. I also asked Robins BF if he would be with me before I go in to surgery. He is very strong and just that sweet and I feel safe with him. Much like T was. I asked him and he answered, "It would be my honor to be with you". I know you will like that one. So I am going to try to sleep again.
Grandson is coming over tomorrow to fix my remotes that Maria broke then we will do dinner. I know I have you in my other corner.  Love Momma

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: Not So Good News Today

Oh Lainy, I'm so sorry to hear this news.  I'm glad your daughter is close by and will give you support when you need it.  I'm praying for you and sending you much love and positive energy. 

A big hug,
Caroline

Re: Not So Good News Today

Oh Lainy, sendng you light and love and all the positive energies possible!  These journey's that we take only make us stronger on some level. You are so surrounded by love from both sides of the veil.  Be strong and know you are not alone, ever.
In peace,
Karen

Wishing all God's blessings!

Re: Not So Good News Today

Lainy,
So sorry to hear you are going through all of this. Thinking of you!

Susie

Re: Not So Good News Today

Thanks Caroline, Karen and Susie. I appreciate all the posts. Now I know how you all feel when we post to you. Think I will take a nap as 2 of my Grandsons and a friend of theirs are coming over late to fix my TV remotes that are not working and then I will take the 3 young men to dinner! LOVE being with them. One is 17 and 2 are 19. Its a good feeling when they ask to bring their friends. I am blessed.

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: Not So Good News Today

Ah Lainy  you just can't win right now can you. I am glad that you have such wonderful family support to be there with you through all this. You know that if you need anything, any of us will do what we can. Sending positive thoughts and love your way.

Hugs and Kisses,
KrisV

Any advice given is based on my experiences and should not be substituted for any medical recommendations. Please speak with your provider before making any changes.

Re: Not So Good News Today

Enjoy your dinner with your young men.  smile

"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: Not So Good News Today

Lainy,

What a gut blow!!  But as a wise woman always says, once you have a plan in place you go into fight mode.

Great that Robin can go with you to the doc because as we all know, another set of ears is helpful when going through things like this.

Stupid *#$*@& cancer.  It doesn't know who it picked on this time!  You are the strongest fighter I know Lainy.

Wishing you the best.

Love,
-Randi-

Survivor of cholangiocarcinoma (2009), thyroid cancer (1999), and breast cancer (1994).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.

Re: Not So Good News Today

Hi Randi girl! The funny part is I don't feel this is happening! It is all too surreal to have 2 at one time. I really am OK, thank you Lexapro! I think I am more concerned that my Sis in law, Maria told me today that after April she wants to come back here for about 6 weeks! OY VEY I love her to bits but 6 weeks? LOL Waiting now to hear from the ONC Surgeon and will update. Went to dinner tonight with 2 of my Grandsons and their life long friend. What great young men they have all become. Hope everything is good in your part of the world and thanks.

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: Not So Good News Today

Hi Lainy,

I don't come on this site all that much but I just saw your post. I'm so sorry for you. You are so precious to me and everyone else that knows you. I wish you the best possible outcome with your surgery. I don't have to tell you to be strong because you already know that drill. Blessings to you, lovely lady.

I love you,
-Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: Not So Good News Today

Dear Pam, boy do we know how to be strong. Miss you and hope you are doing, well, OK. Talk about strength you invented it. I am fine waiting to get the appointment with the ONC Surgeon. Well at lease the appointment to have a little discussion, ok a big discussion. I love you too and please take care of yourself, Lauren would want that.

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: Not So Good News Today

Lainy;

I will be praying for you.  May your love of life and support to others give you strength during this time.  Thank you for always being there for all of us.

Re: Not So Good News Today

Oh, Sharon thank you and I hope you are doing OK in your new normal.
Don't know why I am getting these crazy things but I guess someone has to have them! Now my family is fighting over who is going to stay here with me. OMG I don't even know yet when the surgery is and I hate having someone in my house when I am healing. Haven't figured this out yet except to tell them I will call them if I need them! Nice to be loved but there is a limit! LOL Stay well.

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: Not So Good News Today

Hi Lainy,

I'm just catching up with the forum after being away for 10 days.  I'm so sorry to read that you now have this to deal with too.  Believe me I am sending you some massive hugs and love.  I'm gutted for you that you've been dealt this blow. x

Clare

In the stars now . . . .

Re: Not So Good News Today

love, love, love, love in abundance. You are so loved by so many, including me! Always in my prayers.   xox Holly