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So upset, feel like I'm drowning

eightpawz
Posts: 28
Joined: Sep 2010

I pop on here now and again, but today I don't know where to go.

I was diagnosted Stage IV colon cancer in September 2010. They put me on FolFox. Things were going great, they were surprised how much the tumors were shrinking. Surgery was even mentioned, something they told me wasn't possible. Then boom, things changed. The FolFox stopped working. They moved me to FolFiri, I've been doing this for a few months. The first scan after starting this regimen was good. Tumors shrunk, not alot, but they shrunk and were becoming translucent. Had a new scan last week, got results yesterday. Bad. Tumors have grown ALOT, more nodules in my lungs. I have the KRAS mutation so choices are limited.

I'm drowning. I have a beautiful 3 year old daughter who deserves a mother. Have spent my day talking to lawyers, finding a childrens grief group, and crying. How do I tell her Mommy is going to leave and not come back?

-Dawn

karguy's picture
karguy
Posts: 1024
Joined: Apr 2009

Don't give up yet.Try and get another opinion.I am stage 4 recurrence with a golf ball size tumor on my liver.I am onfolfox,5fu,avastin,leucovorin,oxaliplatin,all at the same time,and it's working.You are not in this alone.We are here if you need anything.I plan on beating it again,and going on with my life.What ever you do,don't give up,we are here if you need us.Just never,ever give up.

Lovekitties's picture
Lovekitties
Posts: 3330
Joined: Jan 2010

So very sorry that the news was not better.

First, for your daughter, she is probably too young yet to understand the reality. But that doesn't mean you can't put your feelings into words for her...for later. Write her letters for the special days in her future, sharing your feelings and letting her know the love you will always have for her. Put them away with instructions on when she is to get them.

Second, for you. Are you being treated at a major cancer hospital? While the news you got is not good, it may be that there is still something out there for you. Get another opinion. Ask about clinical trials.

Keep looking for another treatment plan.

Hugs and hope for you,

Marie who loves kitties

steveandnat's picture
steveandnat
Posts: 887
Joined: Sep 2011

Don't forget this is one huge roller coaster we're on and right now your on the "what the hell is going to happen next cycle". I'm stage 4 since June 09 and been up and down like you. Push your oncololgist as hard as possible. My last scans in April showed mete to lungs but he went back to giving heavy doses of my original chemo and is going to do scans after 4 treatments (just finished number 3). Its keeping me going and like you my own faith and motivation to see my kids and especially my only grandbaby (3 months old). You have the fight in you and your still young and hopefully in good health otherwise. Its hard but keep your head in the game and fight the heck out of it.. I will be praying extra hard for you...you deserve to be around for your baby. Jeff

janderson1964
Posts: 2215
Joined: Oct 2011

Do NOT give up. Get a second or third opinion if you have to. I am in my seventh year of being stage 4 and fighting harder than e er.

herdizziness's picture
herdizziness
Posts: 3642
Joined: Apr 2010

Okay, so make arrangements as I think most of us have, because being Stage IV is particularly scary and unknown territory, then DON'T GIVE UP!!!
What does your oncologist say? There are other chemo's still out there, and there are trials.
So do your crying, because h@ll that's a lot to take in, having your scan turn bad on you, BUT until you talk to your oncologist, please don't think that it's the end of life. As I said there are other chemo's and other trials.
Will be thinking of you and sending you all the very best thoughts I can your way.
Winter Marie

Annabelle41415's picture
Annabelle41415
Posts: 6247
Joined: Feb 2009

You posts makes my heart ache but your's is hurting more. Please get a second opinion. There could possibly be some trials that you could try. Don't let this stop you from trying. You're baby needs her mom and just quality time with her is important right now along with you getting a second or third opinion. My prayers are with you.

Kim

thingy45's picture
thingy45
Posts: 633
Joined: Apr 2011

Dear Dawn, Never give up, there is HOPE, always, and you are not alone. We all walk this path with you, cry, scream and then pull up your socks and get going.
There are more stage IV on this board, you are not alone.
Spend as much time with you daughter as you can, write letters to her and keep a journal.
There are many possibilities out there just push your onc and team to find them and fight with you.
My prayers and thoughts are with you,
Marjan

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

I am so sorry that you are facing such a hard situation. I hope you will seek out a second opinion, as others here have said. There may be other chemos or chemo combinations that could be tried. I believe regorafenib is now available to patients whose cancer hasn't responded to traditional treatment, at least in some parts of the country. Would this perhaps be a possibility? Whatever you do, don't give up. You're still here, and there's still hope. Sending strength your way-Ann

idlehunters's picture
idlehunters
Posts: 1792
Joined: Apr 2009

Why don't you talk to your Onc about that Regorafenib? What about RFA or Cyberknife to attack the larger tumors that chemo won't take care of? I know it feels like things are closing in on you but you still have options. Please get other opinions too. MORE opinions will yield MORE ideas and perhaps MORE options. Pulling for you girl!

Jennie

shincy
Posts: 9
Joined: Mar 2012

I relize you think its bad but miracles do happen look around you will have see miracles. People who were diaagnosed with no chaances and are still around to tell us about it. Lots of prayers you. May God give you miracle to see your little one grow up. God Bless
Sheila

steved
Posts: 835
Joined: Apr 2004

There are a good number of people on this site in similar positions who can understand the huge challenge you are facing that feels completely ovewhelming at times. I too have children (4 and 7~) and find the hardest part of facing this is thinking about the impact on them. They need some information, as they know when things aren't right and often feel scared if they don't understand why you can't be the parent they might at times expect. However, they also can't hold the uncertain parts of what we are facing- dying but not knowing when/ how long etc.
There is no right way to deal with this when you have kids. We have found talking to them openly as to answer any questions they have is helpful- it fills any areas they feel the need to understand and helps them feel a bit more in control. However, protecting them from the stuff even we don't know which in my situation is about death at some point in the future, stops them having to hold stuff I don't think they have the capacity to process at that age.
Howver it does burden you with even more emotional challenges than simply facing your own illness and will at times feel completely overwhelming. Give yourself time and space when this happens- talk to people who you feel understand and use us. We are alwys here and we truly can understand.

steve

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