What does Stage IV mean?

Robyn, Ramble away it's okay. It has just been over a year for me. It is a hard thing to grasp and yes it really does suck.  I like Kimberly, plan to live a long time.  We never know what our future will bring. I have chosen to fight this with everything I've got.  I also have scleroderma. Have had it over 11 years. If you were to listen on the stats of this disease I should not be here today. I have begun to declutter which I should have done a long time ago. Just because it is so freeing. As the saying goes "less is more"

Do you only have bone mets? from what they told me bone mets are very treatable. I also have been told we are treated as chronic.   There will be more ladies soon with more wonderful advice. Heather

I am 9 months into Stage IV. I was a stage IIIC. I just knew it was coming back. I had 3 years.

It is a new normal. I don't believe that good attitude will get you through. I believe that we should take all the meds we can to cope (anti depressants, pain meds and sleep aids!). I think that we need to take our good days and run with them.

I believe that a good scream cry in the shower is very cleansing.

I believe that we need to be engaged with everything our doctors want to do.

I have HOPE for a future, I am preparing for the alternative. Do I walk around all depressed and sad? HELL NO! I try to live like a normal person. I refuse to let cancer be my life.

I hold on to all of the positive stories.

I must tell you that I sit next to a 15 BC survivor during chemo. She is a 10 year metster and had brain mets 5 years ago!! She is stable and doing great!!!!! She is my hero. I am going to be like her. That is my plan.

Another thing that I did was start a carepages (or caring bridge). I invited all my family and friends to read it. I talk about my treatments, my fears, etc...It is the easiest way to let them know what is going on. Because lord knows we don't want to talk about it over and over.

My kids are my biggest sadness.

A think a lot of the time I just try to live in the land of denial. LIke someone else said on this board. Everyone likes to say, you could be hit by a bus tomorrow. The problem living with terminal cancer is that we are standing in the middle of the road and we can see that damn bus coming.

Siblings? I know that all of my siblings are heartbroken for me. I really thought I would not be the first one to go. What I do know is that they love me and my honestly about what is going on, will make it easier on them.

My husband? I will save that for another time.

Honey, this is a long hard road. You didn't offend anyone. We are hear to talk about crap like this. I just posted about living scan to scan, and how I can't decide to buy a dress for myself or new work clothes...until I know I will still be working over the next year...

There is 401Ks, retirement, insurance, planning, etc.. that we think about.

So for now just take it one day at a time. Easier to digest that way.

Hang in,

Janis

Robyn, you've put what I've always been thinking into words so eloquently.

I also agree with what everyone here has written.  Personally, as best as I can, I try to live my life the way I would have if I didn't have cancer.  I try to keep it as normal as possible for my kids.  I may indulge a little more on my kids and myself.  I'm going to an overnight spa tomorrow and although, financially, I might not have done it pre-cancer, we'll manage so I'm going.  I still make plans.  I still have goals.  I don't make futuristic plans anymore (where I'm going to live when I retire) but I'm not going to stop planning for the future.

I was told grudgingly by my oncologist years ago that my prognosis with mets was 2-3 years.  It'll be 3 years this August.  Yeah, I'm' worried that I could have 5 months.  But I'm going to keep on plugging away at it to ensure that I'm still here when that date comes. 

Don't give up on your dreams yet.  Even in the almost 3 years that have passed, I've had quite a few dreams come true that I wouldn't have expected to see.

I have been stage 4 for over 3 yrs.  I was originally dx with 6-9 mos due to spine mets, lung mets. liver met and bi-lateral pleural effusion.  I had the flu, pnumonia, collapsed lung... and I am still here.... I was diagnosed Dec 20, 2005 and diagnosed stage 4 January 20ish, 2006.  And right now I am fairly stable... a couple new tumours and pneumonia, and UTI to put me in hospital... but Im good, and will stay this road for some time.... no intensions of invoking my Living Will yet.

Hugs, RobynK! I think the first thing we do is cry......do what YOU need to do. No matter what anyone tells you, you will process this in your own time & your own way. But know this:

In the middle of the nite our imaginations will take us far worse places than the reality ever will.......hang tight! 

There are MANY stage IV sisters posting who have been walking this road for years. As your onc said; living with metastatic cancer is do-able! It will be 5 years for me next month! We are here & plan to stay for a long time......we walk the road together!

Be well & stay strong 

Hugs RobinK~~~~You are already farther along in your thinking than most of us get in 2 years!!!!! Go with what works! When my time comes I'll know it & THEN will be the time for tears & fears.....right now I want to go live my life, love my people & laugh often! NO ONE knows when it's over! & I have a 16 yr old who has her first boyfriend & is going to her first prom-----I have lived to see this! As long as new tx's are being discovered--what says I won't see her (or her brother) graduate from college, married, maybe even my babies' babies?

.......be well & stay strong! 

hello, I want to say that stage IV does not determine my future.. It only determines that I have cancer. I believe that I will be around when a cure is found. I live my life everyday with peace. I have two girls and a husband and I want to be around for them. I don't let anyone or anything disappoint me. belive that you will be here and you will. Docotrs are here to help us, but they cannot tell us when it is our last day here on earth.

Enjoy life!!!

monica

I spoke with my new oncologist yesterday, and asked him am I deluding myself? I have bone mets to the spine and rib, and possibly thyroid (still need biopsy on that). I told him I know there is no stage V, so what are we really dealing with? He looked right at me and said, "I see no reason why you can't beat this. I'm thinking full remission. Even 5-10 years ago, it might have been a death sentence, but there are more anti-breast cancer drugs and treatments than for any other cancers combined." He didn't want me to have false hope, because we never know how the tumors will respond, but he wanted me to have real hope, because he thinks we can beat this.

I am SO blessed to have a doctor now who spent an HOUR talking with me and never once looked at his watch. :-)

Robin, all I can say is yes, it makes you look at things and make some decisions.  When I was dx in Dec I was a Realtor in a very crappy market.  Starting to think I needed to look at changing careers.  Then BAM a mets dx with a broken femur and facing 5-6 months recovery time, as well as 4-5 weeks of radiation.  I wouldn't have been able to work anyway so I went ahead and decided to go on disability.  I'll take my social security money I've paid in all these years now since I was easily not gonna be able to work the required 5 month wait.  Not to mention the fact that NO ONE was gonna hire a newly dx'd stage iv person in a new career.  I'm slowly getting my strength back and starting to hobble around on a cane easier so this summer will go back to work at the theatre part-time under the disability guidelines.  I am also throwing things away like crazy!  I am determined to unclutter my life and my house.  haha

I'm starting to think it is OK to let things be about me for a change. 

OMG Saint, dancing with the stable boy???  LOL  Does he have a brother?  Or cousin?  Hell I'm not picky!!

I just wanted to add something I overheard while getting treatment recently....

My onc and some onc nurses were talking amongst themselves.  The treatment area is being renovated so I suppose under normal circumstances they would have spoken in private.  Anyway my onc was telling the nurses that she truly believes in miracles.  One or two of the nurses didn't quite believe her (which is too bad) and she spent the next 15 minutes or so rhyming off some of her cases, where people did a complete turnaround.  She basically said if she hadn't seen it with her own eyes she wouldn't have believed it either.  My onc has been at the hospital for about 20 years and has seen a lot of patients.

Although I probably overheard something I shouldn't have, it gave me hope to believe that anything is possible.  Surround yourself with people who believe in you.

What does NED mean?  I will pray for you-

What a very positive forum, I love it.  In all of the threads of this healthy discussion, there are quite a few of you who mention cure.  I think that is very positive and plausible for us.  I have been researching for 3 years and most of the literature is pointing to newer and improved therapies, with less toxic effects.  I saw my oncologist last week.  He commented on how strong I look going through chemotherapy.(it could be the steroids,they give you enough, I think I could run the Kentucky Derby in record time).  He mentioned that one of his patients had died this week.  I looked at him with dismay, and then he proceeded to tell me that she died of senility, NOT breast cancer.  She responded so well to chemotherapy that it never reared its ugly head again.  I think unfortunately we all have to cope day by day, but I firmly believe a cure is on the horizon.  Hang in there.  Will you all come to my party? Maryiz

Wow, some amazing uplifting stories!!

So days I think I should go on disability..I am having so much fun in my job...

This is such a wonderful group of positive ladies!!! I was dx in April with bone mets to the spine and have been through a crueling month of radiation, am now on Abraxine chemo. There are days when all I can think of is cancer, cancer cancer. However, I know those negative, depressing thoughts are not from my God. The enemy uses whatever opening we allow him to cause us misery, pain and hopelessness. I'm using Christ as my example....when He spent 40 days in the wilderness and the enemy continually attacked Him, He fought back with "It is written" and used God's word to banish him. Memorizing scripture has been a huge blessing to me. I want to have it in my heart and mind to do battle and not allow the enemy to spiral me down into depression, fear and pain.  My favorites: Psalm 33:18; 2 Timothy1:7; Psalm 16:8; Psalm 139:13-18. This battle is not an easy one, to be sure, and this board of positive women can give us much strength. Let's continue to lift each other up...we all get down from time to time. You ladies are God's blessing to me.