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How do you carry on with life. Stage IV Need advice and encouragement

New Flower
Posts: 3836
Joined: Aug 2009

Hello my dear friends,
If you have missed my unfortunate news, 10 days ago my diagnosis was updated and I am back to the professional ring.
My pet/ct showed multiple areas in my spine on both sides, I have dusted off my boxing gloves and I am ready fighting back
Today got Xgeva shot and will start Chemo next week

Please share your experience and stories, I do need inspiration and encouragement
Thank you very much
New Flower

RE's picture
RE
Posts: 4605
Joined: Feb 2004

Take it a day at a time my friend, I know it is difficult but try not to think to far ahead. You never know each day is a blessing find the good things they are there! Keep hope alive, many stage IV live long lives on maintenance...remember the longer we live the closer we get to the cure. Each year the treatments are better and we inch closer to beating the beast into the ground. It has been 12 years since my cancer went to my chest wall and sentinel node, I have had relapses and other related issues but life is worth fighting for life is worth living and cancer does not have a right to steal your joy of living from you!

Love you my friend,

RE

camul's picture
camul
Posts: 1942
Joined: Dec 2010

all I have to do is talk to my boys. I was going to stop chemo last month, and they both gave me every reason not to. I find that for me the best way to keep going is to set goals, I am now trying to figure out my next one. I just made the last one which was going to San Diego to my nieces wedding. At first they didn't think I would see Christmas that was 21 months ago.

The chemo and treatments are not fun as you know from the last one, but it can be done, and I will keep doing it until either the doctor stops it or my body says no more. Some days are not good, but then I wake up the next morning and it is a new day.

I am on my first real chemo break for 3 weeks in 17 months of weekly treatment, other than the 2 weeks needed to do scans. This break is revitalizing me for the next round. A month ago I was so tired and sore I was saying no more. The only thing that I will change is more breaks.

When you read all the stuff on the internet, remember that is all statistic based and does not take into account other health issues, age at onset, or any thing else that may cause someone more issues, and we are all individuals and everything from diet to environment plays a part in how we do!

Hugs and prayers.
Carol

MAJW
Posts: 2515
Joined: May 2009

I posted earlier that for me, Zeloda, was very, very easy on me...only thing, my hair thinned...I was on it for 7 months, on one week off one week......I took it twice a day... had seven months of a "normal" life....really no side effects to speak of...a real blessing compared to IV chemo...If you have any questions, please ask.... I'm doing really well on the Avastin and Carboplatin

Hopefully Zeloda will be as easy on you as it was for me...
Big hugs, Nancy

CypressCynthia's picture
CypressCynthia
Posts: 3700
Joined: Oct 2009

I was diagnosed with bone mets April 2009. I was pretty freaked at first, but then decided to pick myself back up and fight. I now think of this as a chronic condition such as diabetes. Maybe it's denial, but it is working for me. You are in my prayers tonight New Flower. Hang in there!

ladyg's picture
ladyg
Posts: 1572
Joined: Apr 2010

I do not have any stories or experiences to share but I can offer my encouragement. As long as you stay in the fight you have a lot better chance of beating the beast. Please know that all of your pink sisters are here for you and want you to win!

Hugs,
Georgia

New Flower
Posts: 3836
Joined: Aug 2009

Thank you for your responses. Tomorrow I am planning a normal day.
We will win together no doubts.
Love
Olga

eihtak
Posts: 784
Joined: Oct 2011

You sound ready for this round....I'll have you in my thoughts and prayers.

Gabe N Abby Mom's picture
Gabe N Abby Mom
Posts: 2415
Joined: Sep 2010

My mets were found in Aug 2011, only 10 months ago. I have had to work to adjust and get my around being stage IV, just like the first time there is much to absorb.

I'm generally a practical person, it is what it is. I can't change this, but I can control how I react. For me, it's not about why me? or what if? It's about what is happening right now, it's about what's important right now. I've also said to several people that complaining just doesn't help, it doesn't change anything and will only make me and the people around me miserable.

On the side of complete honesty and full disclosure, I take an anti-depressant. That philosophy I talk about above...I lost it for awhile and was dragging through each day. So, I also think you should recognize there will likely be some dark days. I say that because I wish I had been better prepared for them...watch for those signs of clinical depression. If you need it, get help.

As far as the disease itself goes, I think you'll find a rhythm or a pattern. You and your docs will learn what is the best way to monitor it. You'll learn what things work for you...guided imagery, meditation, exercise, which foods help you feel better, naps, etc. As CC said, it's like a chronic disease.

Finally, (in case you don't see it) I said on the ct results post that I also took xeloda for a while. I had virtually no side effects, so it was really easy for me. But in my case, I did have some head games about giving the chemo to myself vs having someone else give it to me. We only stopped because it wasn't working for me. I hope the xeloda works for you for a long long time, and that it is easy for you too.

I hope this helps.

Hugs,

Linda

missrenee's picture
missrenee
Posts: 2137
Joined: Apr 2010

about PET results. In six months--this could be you too. I was re-diagnosed at Stage 4 in January of this year. My mets were also in my spine/pelvis. It was devastating and some days I still can't believe it. For a couple of weeks, I felt like a walking dead person. Just going through the motions of life, but my head in a black hole of despair.

But, here I am 6 months later--back with NED. It might not be permanent, but it could be for a very long time.

I go to group therapy for cancer survivors for 2 hours a week at the Wellness Community in my town (Phoenix) and it has been so wonderful. I would urge you to find a group that works for you. You will be with people who understand exactly what you're going through and can help you through the rough moments.

Like Linda, I also take an anti-depressant (Lexapro) which I believe helps me stay even and balanced.

Take good care, New Flower, and please keep us informed.

Hugs, Renee

NewOne39
Posts: 22
Joined: May 2012

I was recently diagnosed with mets to the lung and that was about 2 months ago.

Today was my first treatment (had to wait because I have been accpeted into a trial) but I don't know which drugs I am taking. An really today--my first day (I spent 12 hours there) was really not too bad. No nausea a little diarrhea but overall not too bad.

I have been able to face this diagnosis better because of the support of the sisters on this site. It was very difficult for me upon hearing the recent diagnosis and having to wait so long to start treatment. But these ladies are suvivors and have gone on many many months and that is impressive.

I really believe in prayers and will pray that you have an easy time with your recent diagnosis and pray that your treatment will work well for you.

VickiSam's picture
VickiSam
Posts: 8128
Joined: Aug 2009

Hoping and praying everyday for a miracle or cure to put you back into remission. I have
no idea what you are feeling, or how you can pull yourself out of bed each and everyday.
I do know, that you are a force to be reckoned with. You are a strong WARRIOR - full of grace, poise and gentleness.

This latest news is so unfair, but our Father in Heaven knows that you will endure
this journey, can come out victorious!

I simply adore you to pieces, my dear Sister.

Strength, Courage and Hope for a CURE.

Vicki Sam

AngieD's picture
AngieD
Posts: 504
Joined: Sep 2011

Olga, I am so sorry to hear of your mets. I was just diagnosed with Triple Neg IDC in Jan and am 2/3 of the way through treatment (chemo Jan -June 5 and surgery Thursday with rads to follow.) So, I can't say, "I know how you feel." But my husband was diagnosed a year ago with Stage IV Esophageal Cancer, which has worse statistics than pancreatic cancer. So, I can share some things that have helped us as a couple. We were completely blind-sided with this and found with his case and mine, the worse part was the early days with all the tests and appointments and research. Once a plan was in place, it felt more manageable.

One thing we've learned is that some of the things you hear that sound like cliches are so true:
- One day at a time
-Everyone is a statistic of one
-Set goals

My husband has responded well to chemo for which we are very grateful. The goal is the longest life with the best quality. We would love to see NED someday, but treating it as a chronic disease is also doable. His last scan was great, so he's on a chemo break from June until at least Sep when he'll have a PET scan.

From day 1 we have set very short term goals and some longer term ones. He had to have quadruple bypass surgery in Jan (no history of cardiac problems) and our goal then was to sleep in our own bed again. And we've made travel plans 6 months in advance. When his first chemo infusion started, I texted our kids, "The healing has begun." And that's the way we've tried to look at it. For 12 weeks we both went weekly at the same time for Taxol and actually looked forward to it in a weird way. I visualized the drip hunting down and zapping those nasty cancer cells like the old Space Invaders game. We also have found out we both feel better if we get ourselves out and about in the world with other people. Right after my husband was diagnosed, our PCP suggested we both start on tranquilizers (Citalopram) and we have both been on it since.

I bought a book, PREPARE FOR SURGERY, HEAL FASTER by Peggy Huddleston and a meditation CD that goes with it from Amazon just before my surgery. I didn't have time to finish it before surgery, but mainly wanted it for the healing part. There is even a section in it on Chemotherapy that has documentation that validates what I was trying to say about how one looks at chemo. I plan on using techniques from the book for hopefully fast healing from the surgery and for rads and, of course, sharing it with my husband.

I'm hoping and praying your treatment gives you wonderful results like Renee got with the least side effects.

Angie

New Flower
Posts: 3836
Joined: Aug 2009

Thank you very much for your responses.
This week has been very busy with tests. Almost every day I was in the hospital or medical office. Biopsy has confirmed that we already knew. Yes, it is metastasis from primary Est/pr positive. No additional ( from pet) was found on bone.
Picking up pieces with great appreciation and love
New Flower

LoveBabyJesus's picture
LoveBabyJesus
Posts: 1646
Joined: Jan 2011

Sweet sister -- I will be praying for you. I pray that God gives you strength, courage, helps you to stay positive and helps you keep your faith.

We got your back.

One day at a time.

XOXO

SIROD's picture
SIROD
Posts: 2076
Joined: Jun 2010

Dear New Flower,

I believe that you will adjust as we all have to the new, "you are stage IV". After the dust settles with all the tests and appointments, you will pick up your life once again.

Wishing you the best,

Doris

mariam_11_09's picture
mariam_11_09
Posts: 693
Joined: Nov 2009

How are you doing? Anymore news on your treatment plan New Flower? Been thinking of you so much.

much love to you and big hugs
mariam

lynn1950's picture
lynn1950
Posts: 2550
Joined: Jun 2008

New Flower...I am just so sorry to hear your news. I don't have any stories or experience to share with you. Know that I am thinking of you and sending healing thoughts. xoxoxo Lynn

New Flower
Posts: 3836
Joined: Aug 2009

It has been a very difficult two and half weeks for us. I have had a bone biopsy which confirmed what we already knew, Xgeva shot (which was OK) and bone scan, which did not show any additional (to PET) findings and made me calm down a little bit. My husband took me and stay with me through biopsy; Ines went with me to the bone scan. Nuclear medicine doctor talked to me after the scan and I was happy to learn that there was no additional findings (LOL). Since My PET/CT was really very bad, we were concerned that bone scan could be more accurate for bones and "pick up" something new. I still cannot believe it. I cried from joy on Ines shoulder as I was happy that nothing new came out of the bone scan!!!
Currently I am waiting for some test results before starting oral Chemo Zeloda we will look at another options. If test results show that I do not have enzymes to metabolize oral chemo , or look for another options.

I want to thank everyone who has responded to my post for your positive thoughts, prayers and good wishes
New Flower

sea60's picture
sea60
Posts: 2601
Joined: May 2010

positive news...that there was NO new or additional growth on the bone. Just as all these wise and beautiful women have shared, take each day at a time. You are such an inspiration to so many. Your gentle and kind spirit is always felt through your words.

I am praying for you. You are a strong woman and I know you will fight this.

Hugs,

Sylvia

New Flower
Posts: 3836
Joined: Aug 2009

Tasha,

 It is scarry, no doubts please read responses from others. You can do it, fight back and win.

tasha_111's picture
tasha_111
Posts: 2028
Joined: Oct 2008

Yhanks for doing that for me, helped a bit........... hugs to you xxx Tash x

VickiSam's picture
VickiSam
Posts: 8128
Joined: Aug 2009

..  I have no idea what any of you may be going thru emotionally, mentally, or physically.  All I can do is pray for you all, and send positive thoughts your way - daily.

 

Always remember ... YOU are loved, with family, friends and loved ones cheering you on.

We are here for you 24 hours a day, 7 days a week. 

 

Gentle hugs,

Vicki Sam

 

Bella Luna's picture
Bella Luna
Posts: 1563
Joined: Aug 2009

I do not know what to say.  Yes, stage 4 is a different ball game.  I hope the advice left by the Pinks brings some comfort to you.  You and your family will be in my prayers.  Keep going, you are doing what you can.  You are giving it your best effort.

Hugs to you.

Ines

 

sea60's picture
sea60
Posts: 2601
Joined: May 2010

you're one of my  favorite sisters on the board. You are a strong woman and so beautiful! I know you will fight and conquer and live each day to the fullest!

Prayers and hugs!

Lynn Smith
Posts: 1265
Joined: Mar 2011

I don't have a invasive cancer(DCIS) but till I don't feel comfortable about my body.I don't feel the same as I did 4 years ago. Even though it was Stage 0 I feel it could and might come back.Nothing is a sure thing.

I look at all the Pink Sisters who have fought the battle several times, those who've been on chemo for years and those who fight everyday.You're the ones I  learn from and look up to.Like some of you I have a friend who told me she will be on chemo the rest of her life.So far it's been 5 years.She Looks good and haelthy.She has treatments 1 day a week(Friday). Takes the day off work.Then back to her normal routine on Saturday and to work on Monday.

You were dx the same year as I was.I've had about 4 scares since my dx but Thankfully it wasn't anything. I prefer being like another friend.A 19 year survivor and once or twice had a scare.   

I know you're gonna fight this beast and win.I feel that in my heart.I'm Praying for it.My prayers work.I pray to get me through the hard times.

Lynn Smith

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