Wish I had better news :(
pinkkari09
Member Posts: 877
Well, my PET scan revealed why I'm in so much pain and my tumor markers are on the rise 
The Xeloda that I've been taking for 6 months has not been working. My cancer has spread from two areas of my spine into three more areas, back into my lymph nodes, including my supraclavicular node, and into my hip The news was devastating, I so wanted the Xeloda to work. Now they say I have to start an IV chemo again in which of course I'll lose my hair again I haven't decided if I'm going to go through with it or not, I'm so tired of this battle, I've always been a fighter but I'm really getting wore out. I asked my oncologist what will happen if I do nothing, she said 6 months, I asked her what if I do all these other chemo's, she said 2 years. I'm really torn, I don't know what to do, I told her I would get back to her yesterday, in which I haven't because I can't decide what to do. My family is devastated, my daughter is in Hawaii on her honeymoon and doesn't even know what's going on back here, thank God, at least she can enjoy her honeymoon.
Scared, Lost, and Confused,
Kari
The Xeloda that I've been taking for 6 months has not been working. My cancer has spread from two areas of my spine into three more areas, back into my lymph nodes, including my supraclavicular node, and into my hip The news was devastating, I so wanted the Xeloda to work. Now they say I have to start an IV chemo again in which of course I'll lose my hair again I haven't decided if I'm going to go through with it or not, I'm so tired of this battle, I've always been a fighter but I'm really getting wore out. I asked my oncologist what will happen if I do nothing, she said 6 months, I asked her what if I do all these other chemo's, she said 2 years. I'm really torn, I don't know what to do, I told her I would get back to her yesterday, in which I haven't because I can't decide what to do. My family is devastated, my daughter is in Hawaii on her honeymoon and doesn't even know what's going on back here, thank God, at least she can enjoy her honeymoon. Scared, Lost, and Confused,
Kari
0
Comments
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Oh Dear Kari,
My heart is breaking and the tears are flowing. I am so sorry to read this. I really thought the Xeloda would do the trick. The decision is yours to make. However, I know that you are a fighter and a strong woman. Maybe if you do the chemo they'll be able to come up with something else in the next year or so. Remember, we are here for you, whatever you choose.
xoxo,
Jean0 -
Wow... I wish there was
Wow... I wish there was something I could say. I always believed I too would give up the battle if quality of life wasn't there for me in the end. Two years sounds like a lot of time and there is always new research being developed on a daily basis, maybe just maybe there might be something new available that your onco might keep you in mind for in the upcoming months. Damn cancer, my heart aches for you and your family. I am so sorry...
Lorrie0 -
Kari, I'm so sorry
Kari, I wish with everything I have that you had better news, too.
You're a mom, of course you want your daughter to enjoy your honeymoon -- but I think she may feel really blindsided if she comes back to find that you've made this decision without her even knowing.
Is it possible to wait until she comes back to talk this over with her and the rest of your family before making your decision?
Big hug to you -- sending all the strength I can your way.
Traci0 -
Kari...
I understand...I'm back in the battle with TNBC...I want to let you know about the clinical trial I started this week...an ORAL chemo that is in phase II...
Please ask your oncologist about this...the trial is in conjunction with Sloan Kettering in NY...the drug is called TESETAXEL...MY ONC SAID THIS IS THE BEST THING SINCE SLICED BREAD!....PLEASE google it......it is for those who have had conventional treatment....then a recurrence...I qualified and took the first dose on Wed....5 capsules....PLEASE ask about this....
If you need more info about this let me know...I'll even give you my phone#.....
I am praying for you,
Hugs, Nancy0 -
The decision is yours but
The decision is yours but your daughter would probably want you to stick around as long as you can. Maybe something new will come along. In fact I read they think they found something to help stage 4. I'll see if I can find the article.
Hugs!
P.S. Oh I think MAW posted it!0 -
Onc said something about a
Onc said something about a PARP inhibitor, I was so shook up I didn't hear half of what she said. I really do need my daughter (she's an RN on the oncology unit at the hospital) to help me make this decision. I've been through four kinds of chemo now and it seems I can't get more than one clear scan and it returns. I'm keeping my mind open and praying for the right answer and decision. Thank God I have all of you!!!
Kari0 -
I agree with what it says on
I agree with what it says on your shirt. Doctors can say 6 months....two years... but they don't REALLY know. Only you can make the decision to keep fighting with chemo. But it is true that they are finding new weapons all the time. Have you found something to help with the pain you now have? Sending hugs and prayers your way. xoxoxoxo Lynn0 -
Dear Sweet Kari ...lynn1950 said:I agree with what it says on
I agree with what it says on your shirt. Doctors can say 6 months....two years... but they don't REALLY know. Only you can make the decision to keep fighting with chemo. But it is true that they are finding new weapons all the time. Have you found something to help with the pain you now have? Sending hugs and prayers your way. xoxoxoxo Lynn
I wish I had words of wisdom for you, or magic to rid your body of this nasty 'beast'. I am so so sorry.
I also understand the reason you want your daughter with you ... her being an Oncology RN as well as a support system for you.
You are a STRONG WARRIOR, and you will make the best decision for yourself and family.
Strength, Courage, Hope and Prayers for you, dear Friend.
Vicki Sam0 -
I'm not surprised you
I'm not surprised you haven't called your doc yet...I think difficult is an understatement when it comes to the decision you face. I also think waiting till you can talk with your daughter is a wise choice. Besides, it's not like your doc is going to say "you waited a week to decide, now you can't have the chemo." But call the doc and let her know you're still talking to family and deciding, that way you don't get a call from her and you get to be in control.
And can I just say how much I admire your strength and courage. Whatever you decide...you go girl!
Hugs,
Linda0 -
Kari - I say FIGHT
Who know where we will be in 2 years? Who says we won't have
a cure tomorrow? Honey please don't give up. I know you are tired
and worn out but that's what we are here for. We will do anything we
can, call you, write you.. ANYTHING to keep your spirits lifted. Don't
stop believing.
I have to steal Chen's quote, and if I knew that the world ends tomorrow,
I would still plant a tree today. Live the life you have and enjoy.
Love you Kari and really feel upset right now, I have tears streaming down
my face. I wish I could ease your pain and I just don't know how.
Sending you lots and lots of love!
Ayse0 -
Kari, this just plain
Kari, this just plain sucks!! I know you are tired but you have to continue to fight. You never know what is on the horizon. I always think about KathiM when people are given timelines on living and I recall her saying she was given 6 months. That was years ago!! You are a fighter and I know you will make the right decision for YOU. It's all about YOU now.
I am also getting into my third round of fighting this beast and will also begin IV chemo in the very near future. I'm here for you in anyway you need. Your shirt says it all and I wholeheartedly agree!! Sending love, strength and hope your way.0 -
I am so sorryMyTurnNow said:Kari, this just plain
Kari, this just plain sucks!! I know you are tired but you have to continue to fight. You never know what is on the horizon. I always think about KathiM when people are given timelines on living and I recall her saying she was given 6 months. That was years ago!! You are a fighter and I know you will make the right decision for YOU. It's all about YOU now.
I am also getting into my third round of fighting this beast and will also begin IV chemo in the very near future. I'm here for you in anyway you need. Your shirt says it all and I wholeheartedly agree!! Sending love, strength and hope your way.
to read this Kari. I hardly know what to say. Please read what Ritzy wrote and see that those 3 pink sisters fought and won! WON! And, I believe in my heart that you can too!
Someone wrote on here that Cancer does not own me, I own cancer! To me that means to fight, to fight with all that you have in you!
So, please fight Kari!
Hugs, Lex0 -
I didn't have invasive bcMyTurnNow said:Kari, this just plain
Kari, this just plain sucks!! I know you are tired but you have to continue to fight. You never know what is on the horizon. I always think about KathiM when people are given timelines on living and I recall her saying she was given 6 months. That was years ago!! You are a fighter and I know you will make the right decision for YOU. It's all about YOU now.
I am also getting into my third round of fighting this beast and will also begin IV chemo in the very near future. I'm here for you in anyway you need. Your shirt says it all and I wholeheartedly agree!! Sending love, strength and hope your way.
I didn't have invasive bc and no chemo or radiation.I don't know what everyone says about it because I havent been through it.BUT when I was told I had bc I wasn;t sure what my treatment was going to be but I stayed strong.Whatever they throw at me I have to take it.AND believe me I am afraid of alot of things esp when it comes to my health.
Two years could turn into 10 years and then maybe 20.Doctors can estimate but they never kow for sure.New things are coming out.I have heard of doctors telling patients they have 2 year and year later they are still living and doing fine.It is your decision.I understand you are tired of it all.BUY you never know if it wlll work if you don't try.
Start the fight and see how it goes.Remember believe in miracles.I do.Wishing you the best.You are in my thoughts and prayers.
FIGHT WITH ALL YOUR MIGHT
Lynn Smith0 -
Wish I had a magic wandDot53 said:Dear Kari..
I am so sorry to hear this news... please know that whichever road you decide to travel down we will be here for you 100%. I will keep you in my prayers..
Love and big hugs,
Dot
Kari, I so wish I had a magic wand to wave over you to rid you of the cancer. I wish I could wave it over everyone and rid the world of this horrid disease! To say that this just is not fair, doesn't even touch on how unfair this is.
I can't imagine how you are feeling or how confused you must be right now. And, you have a very important decision to make. Wouldn't it be better to wait until your daughter comes home to decide what you are going to do? You are a wonderful Mom to not tell your daughter right now, as she is on her honeymoon, but, don't you think she would want to know and to help you with this? This is too much on your shoulders to handle alone.
Now for my pep talk! RE has been thru bc 3 times, did the treatments, and, she is healthy and enjoying her life to the fullest! Kathi M has had cancer twice and from what I remember was given only a few months to live. She went thru her treatments and is living a full life now years later! Pinkflutterby/Libby has had cancer at least twice now and was given the same diagnosis, only months to live. But, she is taking chemo and is living and enjoying her life years later too! So Kari, there is hope, you can live years and years irregardless of how many months a doctor might tell you. Those 3 women are proof of that! No one knows or can know how long a person has to live. We don't have expiration tags on us! However, these 3 women did the chemo, again and again, but, look at what they gained? I am sure they lost their hair, felt bad and wondered why they were going thru it all again, but, look at what they gained. They gained their life back, they gained more beautiful moments and years to share with their loved ones. Isn't it worth it to at least try Kari?
I am not trying to tell you what to do. This is your choice, your decision. But, new drugs are discovered all of the time and new treatments for cancer. Don't let the damn beast win! Please fight, fight with all that you have inside of you to once again be victorious! I know you can do it Kari! Miracles do happen!!!
I will be praying for you Kari, praying as hard as I can! And hoping that something I wrote will give you some inspiration to fight again! After all, you are my sister, my pink sister and I want you around for a very, very long time!
Hugs, love and hope,
Sue0 -
Kari, I think I know what your answer has to be.
I really have nothing to add to what the sisters have already said, except for my own tears and my own prayers. I know you are faced with a very difficult choice between two lousy options. But based on the fight you have put up so far, I suspect you are going to roll up your sleeves and start swinging away. Please do follow up on the suggestions for trials which have been mentioned. And know that I and everyone else here is behind you 100%!
Love,
Joe0 -
Kari:
I am so sorry for your
Kari:
I am so sorry for your latest news....MY heart goes out to you...and sending good thoughts and all to you and your family....
Keep us updated....i wish you the best....
Denise0 -
What ever you decide will be the best.disneyfan2008 said:Kari:
I am so sorry for your
Kari:
I am so sorry for your latest news....MY heart goes out to you...and sending good thoughts and all to you and your family....
Keep us updated....i wish you the best....
Denise
Kari,
I understand how you are feeling. It is tough to be faced with the thought of going through an agressive chemo regime again. I believe that what ever decision you come to will be the right decision for you and your family. Like Joe I am behind you 100% and I will keep you in my prayers. At this difficult time I wish you peace. Love Surf.
P.S. I also agree with your shirt.0
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