Update on the Journey for NED
 

Havent posted in some time...seems that once again i am in a tight spot, where the treatment is no longer working...I am having alot of pain and numbness in my neck , shoulder and collarbone area. My CEA is on the rise, scans next week....don't know what the next option will be, but hoping it will be easier on my counts than the Gemzar has been. My husband has been a big help with the Christmas decorations this year...I can see he has potential with the right guidance!

On the bright side, next week is my youngest sisters last chemo, then it is on to finishing the one year of herceptin....we have gotten to travel together for about half of her treatments, so we get extra sister time when its needed most! She also found out that she is BRCA 1 & 2 negative, as I was...but still questioning as I have a cousin just diagnosed with bilateral breast cancer at age 53...also 2 different subtypes.

Hoping that the Christmas season and New Year brings hope, peace and health to all who are struggling...I try to remain positive, although that is sometimes a challange. Would a cure be too big of gift to ask for???

Re: Update on the Journey for NED
 

Sheila - So sorry to learn you are having these symptoms. Maybe it's time to switch from gemzar; hard to think of changing but hopefully a different chemo will kick back the neck issues and pain. You are always in my thought and prayers. Wishing you a peaceful and hope-filled Christmas. Pam

Re: Update on the Journey for NED
 

I feel inspired after reading your post, Sheila. You certainly have been on quite a ride since 2002. I hope you soon find a combination of meds that rid you of the pain and numbness, but attack those nodes with a vengeance!

Re: Update on the Journey for NED
 

Sheila,
No! A cure is not too big a gift to ask for! I pray for it everyday, for all of us. And rest assured...I'll be mentioning you by name!

I'm so sorry that you're having pain. I hope your docs come up with the perfect treatment in the new year.

Your comment about your husband's potential cracked me up! And, it tells me that your spirit is still strong, in spite of this latest trouble. I know it must be discouraging, but clearly you are a fighter. Please try to enjoy your holidays, relax a little if you can, and then go at the beast again in January. I know I speak for many, many women here when I say...you've supported us when we needed you...now we're here with prayers, good karma, positive energy...whatever will help.

Merry Christmas, Sheila! And tons and tons of wishes for a happy New Year!!
Denise

Re: Update on the Journey for NED
 

Sheila
Keep on asking and don't stop!! Someone out there, God, the Universe or any other divine intelligence must be listening by now.
As Denise has said you have cared for so many I pray that you will receive special help in your quest for NED.
Ellie

Re: Update on the Journey for NED
 

I am so sorry you have been having problems in your neck and collarbone. Hopefully your upcoming scan will give some insight into the problem.
It sounds like it is time for a change in your treatment plan. I wonder if using some of the drugs you used before in different combinations might help? There might also be a different clinical trial available to you other than T DM1. Don't leave any stone uncovered.
Check out every possibility.
I also wonder if acupuncture might help some of the numbness and discomfort. I have had acupuncture fairly regularly for many years and find it very helpful. Recently one of the local acupuncturists got a grant from Susan Komen to provide free acupuncture to breast cancer patients and survivors in Hawaii, so I expect to be getting it more regularly every week starting in Janaury. She called my naturopathic physician for recommendations about my needs and he provided that to her.
You, your sister and your cousin may not be BRCA positive, but perhaps there is a common element like environment that is affecting all three of you.
All the best to you, your sister and your cousin. Blessings of good health and peace to all of you in 2012 and for many years.

Re: Update on the Journey for NED
 

Well, well - that neck area just won't give up, will it?

I am wondering if you might be able to get a biopsy to check the pathology of what is going on? Hormone status, etc.

Your doctor was probably at San Antonio and knows all the latest and greatest possibilities for you. Nice to hear your sister is getting to end of her chemo and will be able to "recover" on Herceptin. I hope they will keep a close watch on her for any sign of mets.

Yes, "let hubby do it" should be the order of the day - you have put in your time, and deserve to do only what you feel able to. This is not the time to push your energy, but conserve some for the next go round.

Lots of love and healing thoughts directed right at that stubborn neck area!

Re: Update on the Journey for NED
 

Sheila, you know how I feel about that...and about you! Stay strong my friend, and enjoy the holidays. And HECK NO, that's not to much to ask. Christmas is all about the miracles, why not include this tiny one for us?

Note on your hubby's potential - I found that extra motivation (in the form of hot mulled wine) was all that John needed to become king of the christmas tree lights! He only "whines" a little bit now (just till the "wine" kicks in!)

Sheila, holding you in BOLD loving prayers this Christmas...
Much love,
Chris

Re: Update on the Journey for NED
 

Sheila,
Most definitely not too much to ask for!!!
Always thinking of you and missed seeing you on the board.
I wish your news was better but i know that between you and your dr. you will have a new treatment ready to go forward.

Keeping you in my prayers...
Big Hugs,
Jean

Re: Update on the Journey for NED
 

You ask away and I'll chime in along with you. The bible says to keep asking!

I will pray your scans are far better then expected. You know how I feel about you, Kiddo! May you have a blessed, pain-free, and joyous Christmas. I hope your 2012 is the year for your long dance with NED!

Re: Update on the Journey for NED
 

I think a cure is exactly what we should hope and pray for in 2012! I have no doubt another option is right around the corner for you! Don't be afraid to switch and move on, the crazy cancer cells just love to thing they are smarter than we are. May you find peace and health soon!

Re: Update on the Journey for NED
 

Wishing the best for you in 2012. There are more
drugs in the pipeline for Her2, keep up the good
work to find the best. You deserve a break and
I pray you get one.
patb

Re: Update on the Journey for NED
 

I am sorry to hear you have been in pain and hoping you can get a new plan very very soon- and go with it. I am thinking of you and sending strong wishes and prayers your way. A cure is not too much to ask for and we need to keep pushing every day. One of the major docs at San Antonio told the patients/patient advocates to keep pushing to be heard- and keep pushing for more research. He said that we would be the most effective at making things happen. So we will continue to do that. And I agree with Steph- let hubby help (it is good for him) and rest up and gain as much strength as you can.

Re: Update on the Journey for NED
 

Sheila, remember, Pertuzumab is right around the corner.1

Re: Update on the Journey for NED
 

Dear Sheila wishing you a peaceful Christmas. I have always been inspired by you since coming on this site in 2009. You are such a fighter and always care so much about all the women on this board. I am sending you prayers, I hope you get relief soon from this pain and a cure is hopefully on the horizon for us all. May 2012 bring you renewed strength and health.

Re: Update on the Journey for NED
 

We're rooting for ya, Sheila!
(((Hugs))),

Paula

Re: Update on the Journey for NED
 

At SABCS there was lots of good news on new targeted combos, so I hope the future involves a lot better control and less side effects for you. They keep getting closer and closer to a cure, or at least a manageable chronic cocktail.

Could you post the information on the cancers you and your sister and cousin have? Is your cousin a maternal cousin or a paternal cousin?

Obviously your tumor at least one or one part of your sister's was her2+. Is that also true of your cousin..

I have been trying to read up on a possible rare hereditary her2+ breast cancer (more likely er+ than not they think) related to Fox P 3 and X-linked

I remember you are a nurse so hopefully these terms aren't "greek" to your ears. If there is such a thing, I would think this website would be the perfect place to discover it!

Best of luck to you, your sister and your cousin--and happy holidays!!

Re: Update on the Journey for NED
 

Sheila I'm so sorry you're having these issue's and do hope your onc can come up with the perfect combo for you in the New Year, and good wishes to your sis too!

Re: Update on the Journey for NED
 

Sheila,

Pertuzumab has your name written on it! Keeping fingers crossed that it will be available in about 6 months. Glad to hear that your sister will be finishing up chemo soon!

Have a happy holiday!

Love ya,

Joan

Re: Update on the Journey for NED
 

Just wanted to wish you happy holidays , Sheila and to let you know you're always in my prayers..
So you're family seems to be like mine where there are more questions than answers regarding our genetics..darn!!

I'm voting for the darned cure .. It's wayyy past due !
{{{{ Sheila}}}}

Re: Update on the Journey for NED
 

Sheila,
As always, so nice to see a post from you. Sorry to hear of continued challenges. UGH!!! Many of us know the frustration well.

It sounds as if your home is warm and cheery this holiday season. Sitting in front of the colorful lights is one of life's simple pleasures for sure. I hope you feel up to soaking up their magical glow.

I agree with the wise input from everyone on the board. More drugs in the pipeline!! More vaccines on the way. Then of course, there are our old friends that seem to help us out. I am on my 3rd run with a taxane and 2nd go around with my old friend Abraxane. Maybe another run with an old friend will tide you over until "Mr. P" becomes available.

Sending warm holiday wishes and I look forward to your inspiring posts in 2012.

Lori

Re: Update on the Journey for NED
 

Sheila, I first want to say that you look amazing. Something must be working. I hope that you can find some comfort from that neck pain. I saw an interesting break thru recently for gyno cancer ( a chemo wash that olny takes an hour and you are done). Lets hope this advancement will get to breat cancer as well. Stay strong and I am praying for you. Darlene

Re: Update on the Journey for NED
 

Thinking of you, Shelia. You are one of my heroes.

Amelia

Re: Update on the Journey for NED
 

Hi Sheila. I haven't been on for a while, but hoped to see an update from you today. I'm so sorry you are having pain, but will be praying for a new plan that does great things for you. We all need to keep asking for the cure! Sending love and hugs and wishes for a kind 2012!

Barb A.

Re: Update on the Journey for NED
 

Hi Sheila...Although we have never met, I do consider you a long time friend. I care about you and what you are going through.

You are always a pillar of strength and encouragement to all. Today I post to offer some encouragement to you....not to mention a GENTLE HUG AND LOTS OF LOVE FROM MY HEART.

I am sorry you are having pain issues and that treatment hasn't been working for you. No, asking for a CURE is definitely not asking too much and I PRAY PRAY PRAY that one would be found and so many wouldn't have to struggle and suffer through this very nasty disease.

Merry Christmas dear friend and may 2012 bring you health......a deep seeded peace and more joy than that beautiful heart of yours can hold.

You are loved "sister!"

Mary Jo

Re: Update on the Journey for NED
 

Hi Sheila,

Sorry to hear about your latest struggles with this beast. May 2012 bring you the magical drug or combo that will destroy this beast. Hope you're enjoying your holiday season without so much pain and discomfort. And hope that rather than the world ending in 2012, what will end is HER-2+ breast cancer and other cancers as well!!

Love,

Marcia

Re: Update on the Journey for NED
 

Im new to the board here, but I have read your posts and you are truly inspirational. Im so sorry to hear of your current symptoms, but will certainly pray that you are relieved of them soon.

Re: Update on the Journey for NED
 

Sheila I hope you are able to enjoy the Holidays. Just to tell you that at midnight, when I think of the ones I love, I will include you in my wishes for the New Year hoping that 2012 will bring you the best. I just can't stand that you are not well. You are our precious sister. Love and Hugs. Michka

Re: Update on the Journey for NED
 

Sheila,

You are such a brave fighter and have been an inspiration for so many of us here. Praying hard that you get right combination to get better soon! Sending best wishes for 2012! You are always in my thoughts.

hugs,
shobha

Re: Update on the Journey for NED
 

Sheila,
I was just going to post what Joan said. I am on the trial, one of 63 in the U.S. that combines T-DM1 with Pertuzumab. In 6-8 months, it should be approved, from what I'm hearing.

Happy New Year, you continue to be an inspiration to us all.
Karen

Re: Update on the Journey for NED
 

Oh Sheila,

I'm so sorry to hear this news. As Brenda would say . . . crap on a crapstick!! I think you know that you are my hero, and if anyone is deserving of a cure, it is you! I hope that your doctors are able to come up with a good option that will not only clear up your pain, but will zap those #%*^)&%!%@# cancer cells.

Please keep us posted as to how you are doing. Sending you warm hugs and keeping you in my thoughts and prayers.

Love, Alice

Re: Update on the Journey for NED
 

Dear Sheila

I am sorry things aren't working right now. Consider returning to something that did in the past such as Taxol (or Taxotere) with Herceptin and Tykerb - will they do that combo or any combo with Herceptin and Tykerb together. Just thinking out loud on what can stabilize you until you can get TDM1 or a trial with something else.

You are one of the strongest women I have ever met and a true warrior. My thoughts and prayers are with you.

Re: Update on the Journey for NED
 

Dear Sheila,

Please keep your spirits up, I'm hoping your docs will find the right magic combo for you. You are one of the bravest, upbeat, women I "know."

Also hoping 2012 is the year of the cure!!

all the best
caya

Re: Update on the Journey for NED
 

As always, thank you all for the love and support...I truly do not know what I would do without all of you! Had scans last week, and will know the results next Wednesday...and know if a treatment change is in order...still having the pain but I think I am getting used to it...scary, another new normal.

In the mean time, one of my labs, Sophie, tore her ACL and will be having surgery Friday....hope the New year improves for all of us!

Re: Update on the Journey for NED
 

Sheila,
A cure is not too much to ask for, and we are all praying that your oncologist will find "the one" for you. Pertuzumab is coming this year- 2012, so says my oncologist! Just have to hang on til then! I think of you and all your encouragement, keep the faith. Remember, faith is believing in things when common sense tells you not to.
Huggs,
Kristin

Re: Update on the Journey for NED
 

Shelia,

You are never far from my mind. I hope the results of your scans are a nice surprise for you rather than the need for a new combo. May 2012 be YOUR year!

Re: Update on the Journey for NED
 

Hi Shelia,
I am sorry that you have had this setback. Pain should not be the new normal. My thoughts are always with you, and I so appreciate the help that you gave me when I was having issues with my insurance approving my Tykerb/Herceptin combination.
You should continue to hope to become NED. As you are aware, new therapies are being developed. You just need to be find one that works for your stubborn variety of Her2. You are a tenacious person, and I know you will continue to search for the treatment that eventually works.
Thank you for keeping us updated. You remain very special to me.
Kind regards,
Barbara H.

Re: Update on the Journey for NED
 

Kristin
I love it when people. Quote my favorite movies!

Re: Update on the Journey for NED
 

I have my fingers crossed for a decent scan report on Wednesday. I think re-trying something that worked pretty well is a good idea unti Mr. P. gets approval from the FDA to come and help everyone who needs his assistance.
Take good care of yourself.

Re: Update on the Journey for NED
 

Shelia, you are always in my prayers as is your family. Gods blessings to all of you.