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My turn to ask for encouragement and information.

MyTurnNow's picture
MyTurnNow
Posts: 2694
Joined: Aug 2009

I have been dealing with my 2nd recurrence since June 2011. I am being treated at Mayo Clinic and was put on Abraxane in August 2011. I have been on treatment every 3 weeks since August. I have had very good results with this chemo. My only child (daughter) is getting married in July and I was talking with my oncologist about possibly going on a chemo vacation. I just wanted to feel better more than 2 weeks out of the month. So, he ordered scans and told me as long as the scans showed my tumors (liver) as stable or better that I could do a vacation. I was so looking forward to this. Well, the scan showed that was not the case, one of the two liver tumors had doubled in size and there is a new one. Bottom line, the Abraxane is no longer working. The new treatment I will begin next week is Eribulin. I read up on it last night and was really wondering if any of my Stage IV sisters have any experience with this drug?

I am a very possitive person but this crap is beginning to anger me. I know that once diagnosed as Stage IV there is no cure BUT it's so hard to grasp that and accept it. I am a realistic person but it pisses me off that I have absolutely NO CONTROL anymore.

Thanks for any advice or information you can share.

Debbie

weazer's picture
weazer
Posts: 440
Joined: Mar 2010

Wow, sounds like your a bit frustrated! UNDERSTANDABLY, I'm sorry I dont know anything about the drug you were asking about.
I just wanted to let you know my heart goes out to you and I hope that this drug will work for you.
Lets hope one of our other sister knows something about Eribulin.
Lots of Hugs coming your way...Karie

LoveBabyJesus's picture
LoveBabyJesus
Posts: 1650
Joined: Jan 2011

Dear Debbie--

I am so sorry you are going through this. I will continue with prayers for everyone here. I pray your new treatment does work. I pray for a new chance and good health again.

I don’t know everything about stage 4, but I personally know people who have been dx with stage 4 – including the mother of a good friend — who was dx with stage 4 after 10 years. It came back in the liver. She only had 10% of survival rate. This was 4 years ago. She recently had a pet scan and she is CLEAN. Dancing with NED. This may not happen frequently, but it does happen. And I believe this will be your situation too. In the name of Jesus Christ. Amen.

Sending you ALL the positive energy you can handle and thoughts of hope.

Hugs

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

I agree! I have heard of people with stage 4 given a bad prognosis and they are still here!

Praying for you as well!

Hugs,

Sylvia

azdixie
Posts: 14
Joined: Mar 2012

I'm sorry I don't know anything about that drug or stage 4 but I wanted you to know I'm thinking about you and keeping you in my prayers. I hope this new drug helps and you'll have a wonderful time at your daughter's wedding.
Hugs,
Dixie

SIROD's picture
SIROD
Posts: 2116
Joined: Jun 2010

Dear Debbie,

I have sent you a pm on some information. I am so very sorry about the results of your scan. It is hard to realize that one has no control over one's body. My recent ct scan which I was so certain would be a good one turned out awful. I really expected decrease to appear and the results were that everything increased in the lungs, lining and ribs.

Perhaps you can have a week or two off before the wedding in order to have your energy level up. I do wish you the very best with Eribulin.

Doris

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

Oh, Debbie--I am so sorry for the bad results of the scan. Seems like we do our best to do everything right, with a strong, fighting spirit, and then total disappointment. I, too, have just become a member of the Stage 4 group and I know your frustration and disappointment as well.

I am not familiar with the new drug, but let's once again hope for the best of all possible outcomes.

Please know we are pulling for you and cheering you on with your new treatment.

Take good care.

Hugs, Renee

SIROD's picture
SIROD
Posts: 2116
Joined: Jun 2010

I wonder Debbie if you would have more replies with the other name Halaven.

Best,

Doris

grams2jc's picture
grams2jc
Posts: 756
Joined: May 2011

That was the biggest emotion both my hubby and I had in December when I was dx. Ho! Ho! Ho! I still find myself pretty ticked about all of this on a pretty regular basis.

I am praying that your new chemo will be much easier on you and work so well, so quickly, that you can take a break pre-wedding.

I am right there with you in the rocky boat of "no control" and it doesn't seem to be a very sea-worthy ship.

I will keep my fingers crossed for you,

Jennifer

KathiM's picture
KathiM
Posts: 7864
Joined: Aug 2005

Anger is good....in my opinion...it got me thru some horrible times!!!

BIG hugs, dearheart!

Knuffels, Kathi

MAJW
Posts: 2515
Joined: May 2009

My health insurance has an oncology nurse that calls me every 4-6 weeks to see how I'm doing, or any questions...
I talked to her about my lousy energy level...this may sound strange but she said to ask my oncologist to prescribe Ritalin !!!
That if I had a special occasion, weddings, graduations, whatever, that taking the Ritalin for the day would give me the energy for the day...Ritalin works the opposite in adults...in children it calms them down...in adults the opposite..gives them energy...

I am stage IV.... back on chemo every 2 weeks...I see my PA after chemo next week and since my energy, again, is in the tank, I'm recovering also from 10 radiation treatments to the brain.....can you say fun? lol. I'm going to ask for it as we had planned a trip to Florida to visit my husbands brother and his wife...they live at The Villages and the place is awesome! And I want to go!
It may be worth exploring this with your oncologist for the wedding.....I'll let you know...my onc is very good at giving me whatever I ask for or need..

I wish you the very best!
Hugs,Nancy

MyTurnNow's picture
MyTurnNow
Posts: 2694
Joined: Aug 2009

Thanks, ladies!

Nancy, what part of Florida will you be in? I am in northern Florida and it would be great to meet a sister if you are close by or passing through. You and I have been on this roller coaster for about the same timeframe. It really does stink but I'm not getting off just yet. I, like you, have too many things to do. As the wedding gets closer, I will check with my onco regarding Ritalin. Thanks and the very best to you, too!!

disneyfan2008
Posts: 5257
Joined: Oct 2010

debbie: so so sorry! I totally get your anger...positive or not...MY heart goes out to you and sending cyber hugs and pixie dust...

Denise

camul's picture
camul
Posts: 2003
Joined: Dec 2010

I started on Abraxane, it quit working and I took Eribulin for about 4 months. I have benign lesions in my brain and the Eribulin made my balance worse and I had trouble following conversations. Knew of lesions b4 mets. Drs thought it could be from meds or a virus at some point in my bc journey. (I was first diagnosed with IDC in Jan 2002).

Stopped Eribulin in Oct for tests and hoping for chemo break. Had chest pains, ct scan showed connective tissues of ribs/chest wall full of cancer. A small tumor in my liver had grown and there was now a second one. Instead of having all the scans, went back on chemo, weekly Navelbine and Herceptin, and daily Evista (tamoxifen is toxic to my system), and Xgeva shot every 4 weeks.

It all sucks and I do not always feel in control. I am grateful for good days and deal with the bad, but it is not easy and I do get pissy sometimes!

Per doctor, Eribulin issues not from the chemo, but it was affecting the lesions. These were not se of this drug.

Carol

fauxma's picture
fauxma
Posts: 3530
Joined: Dec 2008

Debbie,
I have no advice but I will keep you in my prayers and good thoughts.
Stef

Noel's picture
Noel
Posts: 3101
Joined: Apr 2009

Praying for you Debbie.

Bella Luna's picture
Bella Luna
Posts: 1569
Joined: Aug 2009

Dear Debbie,

Feeling for you and wishing you the very best as you begin a new chemo. I can picture you at your daughter's wedding looking radiant! In my opinion, true beauty comes from within and radiates out from us. I am happy you have such a momentous occasion to look forward to come July. I have an only child, an 11 year old daughter, as well.

Hugs to you and yours.

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

I'm so sorry the Abraxane is no longer working. I've only been doing the stage 4 thing since August and have already changed chemo once (Xeloda to Abraxane)...I totally hear you on the accepting thing. It's pretty dang hard to do. I read somewhere else that it's all about constant adjustments...I have faith that you will handle this adjustment gracefully.

On the other hand, it's wonderful to know that important wonderful things, like your daughter's wedding, still happen. I hope the Eribulin is easy on you, while being tough on the cancer...and that you can time it so that you are at your best for the wedding.

Hugs,

Linda

MyTurnNow's picture
MyTurnNow
Posts: 2694
Joined: Aug 2009

Thanks, again, ladies. I really am accepting the situation once again. I think what happens with me is I am so hopeful (as we all are) for the words from my onc "the tumors are gone", that when I get the exact different results, I get angry and feel totally out of control. Well, I do know that Stage IV means continuous treatment. I am still able to work, Jazzercise, spend quality time with my family and I am thankful for that. There are many, many people in this world that are much worse off than me. Thanks for your encouragement and helping me see the positive things out there....my beautiful daughter's wedding!! Can't wait. Have a wonderful weekend ladies!

New Flower
Posts: 3914
Joined: Aug 2009

Congratulations with your daughter Wedding. It is great that she is able to find her sole made.
I hope you will give a serious consideration to the plant I am recommending along with conventional treatment. I took during chemo with exception of two days before and two days after Chemo infusion.
Hugs

TraciInLA's picture
TraciInLA
Posts: 1828
Joined: Jul 2009

...but in this case, I just have to say them, because I'm still just in awe of how physically strong you are in the face of months and months of chemo. Working AND Jazzercise? I can't even make it through a Jazzercise class on my best day!

(unless you count my sitting on the floor in the back eating M&Ms, while you jazzercise your little brains out, shouting "Go Debbie, woo-hoo!" I'm there for you, girl. :-)

When do you start the Eribulin? Please keep us posted on how you're doing -- and when I need to break out the Jazzercise pom-poms.

:-) Traci

SIROD's picture
SIROD
Posts: 2116
Joined: Jun 2010

Dear Debbie,

I hope your treatment went off with no awful side effects. I have been thinking positive thoughts for you that this new treatment will be doable.

We do learn to adjust to "what is" and go from there. I don't expect to ever hear again that the tumors are all gone, I have to many. I do love the word "Stable" though and that is my aim, "stable".

It is good to continue to have a normal life, work, do the things one likes to do and keep cancer in it's proper place, at the bottom of the list.

You have a beautiful daughter's wedding to plan and that is tops!

This is a beautiful time of year in Florida, so may you have a wonderful, enjoyable weekend.

Best,

Doris

ginnyl63664
Posts: 8
Joined: Feb 2012

1st i dont know anything about the chemo your going on and i have ibc breast with mets to thw bones. stage 4might be the last staging number but i know sevearl who has bear it and i myyself after 11 years still fighting it. stay strong. u can doit , huds and prayers

Texasguy10's picture
Texasguy10
Posts: 21
Joined: Mar 2012

Bless you and your family. Stay strong and know I care.
Donald (Texasgirl10s husband)

SIROD's picture
SIROD
Posts: 2116
Joined: Jun 2010

Hi Ginny,

You are doing very well and I wish you many, many more years too. I have been stage IV for many, many years too.

Best to you,

Doris

aysemari's picture
aysemari
Posts: 1586
Joined: Dec 2009

Debbie,

I am so sorry to read this news. And I can only hope that your new
chemo will work and make those tumors disappear. It sounds to me like
your calendar is full and there's no room for cancer. Every day that
passes I hope, it will be the day that we will join in celebration
that a cure was found. And I will never give up on that hope.

You have been so brave and took everything with such courage and grace,
for you to get angry takes a lot. And this is your child's wedding we
are talking about, so I can understand that you show your teeth.

You have all my good vibes and above all you have my caring thoughts.

Hugs,
Ayse

natly15's picture
natly15
Posts: 1930
Joined: Sep 2009

Debbie I pray you are as energized as one can be for your daughters wedding. You are always so very quiet about yourself and lady you are certainly getting my prayers.

VickiSam's picture
VickiSam
Posts: 8219
Joined: Aug 2009

dear Sister. May our Lord provide you with the strength, and stamina needed to get
thru these next several months!

You are a WARRIOR, and your will power and support system will get you to the next
step of this battle.

Fight hard, stay strong and know that we are here offering support, help and prayers.

Strength, Courage and HOPE for a Cure.

Vicki Sam

Jobi's picture
Jobi
Posts: 211
Joined: Jan 2012

Hi, Debbie,

Unfortunately, I don't have any advice, but I would like to add words of encouragement. You have given words of wisdom and strength to many. After you take time to (rightfully so) be pissed off, know that the same wisdom and strength that you have passed on to others will lift you up and provide you with strength.

Hoping and praying for you,

Dorene

VickiSam's picture
VickiSam
Posts: 8219
Joined: Aug 2009

Continued prayers, strength and encouragement for you!

Vicki Sam

trixytwo's picture
trixytwo
Posts: 59
Joined: Nov 2011

I'm here for support and cyber hugs. I'm stage IV too, and it can really get you down. I'm positive most days, but every now and then, I have a pity party for a few minutes (hours). We are all here for you!

Hugs,
Deb

trixytwo's picture
trixytwo
Posts: 59
Joined: Nov 2011

I'm here for support and cyber hugs. I'm stage IV too, and it can really get you down. I'm positive most days, but every now and then, I have a pity party for a few minutes (hours). We are all here for you!

Hugs,
Deb

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