Time for a change - out on the ledge

Carolyns · 05-29-2009, 05:45 AM

Hi,

It appears (by tumor markers) that Xeloda is beginning to fail me. I have been in treatment for stage IV bc for a little over 3years now. I still work full time (home based) and raise my 10 year old son as a single mom. Xeloda has almost felt like a chemo break for me. I am very sad that it is failing. It seems like I get about 4 months out of each chemo. These are the chemos I have done so far after each hormonal failed and the Herceptin / Tykerb. Gemzar, Abraxane, Navelbine, Xeloda. Each combo had been taken with Herceptin or Tykerb and Zometa.

Every time I reach these crossroads in treatment failure it get so sad and scared of what is next... I cry and allow myself to feel the dark emotions. I pray, hope, imagine the next right choice to present itself to me. But the fear and sadness is a part of the process.

Thank you for your support it is just that I tend to forget these deep valleys of emotion when the cancer seems to be under control. I know that I will move forward past these feelings but not right now.

I will let you know what we come up with once I know.

Love, Hope, Peace, Carolyn

Jean · 05-29-2009, 06:47 AM

Dear Carolyn,
I am sad to read your post.
Of course you would feel worried and sad. Fighting this battle is exhausting.
I wish I could say I know of the next best solution as far as treatment goes, but I know each day new treatment methods are always being introduced. I am sure your dr. is searching for current updated methods also.
I always believe in second and even third opinions.
Are their any trials that you would fit into?

Please know I keep you in my prayers for your next treatment - which will bring you to NED.

I send to you a huge protecting hug.
Kind Regards,
Jean

mmoons · 05-29-2009, 08:13 AM

Carolyn-
Lifting you up in prayer and warm thoughts of strength and healing. Like Jean, I look forward to hearing what the next treatment is...and hearing you are NED!

Hugs to you, brave sister!

Maureen

Soccermom · 05-29-2009, 08:15 AM

Carolyn,
I too am sad reading your posting...but I do have an idea. Have you considered seeing Dr Mark Pegram (one of the cofounders of Herceptin) who is now in S Florida?
Maybe he would have some good options for you..

http://www6.miami.edu/UMD/CDA/UMD_Pe...Ve_e_0,00.html

Gentle understanding hugs,Marcia

Shobha · 05-29-2009, 08:18 AM

Dear Carolyns,

I can feel your sadness and I am praying so very hard that God will place his healing hand on you and find the right drugs to get you to NED.

Hugs,
shobha

Carolyns · 05-29-2009, 09:09 AM

Jean, Maureen, Marcia, and Shobha,

I have a great doctor and she will be examining my options even closer at ASCO. She called me this morning to tell me that we will repeat the TM test next week and add in CTC blood work to my regular draws. In addition to her brilliance, I always tell her about the buz on the boards. She thoughtfully examines these ideas and we reach a conclusion together based on my history and profile. She is a leader in the treatment of young women with breast cancer.

All of that said, I really appreciate your kind words. There is no way around this difficult time. But I will remind everyone (I know that all of you "get it") when folks are down (aside from a cure) kind words of encouragement mean so much. I am reminded that this is true for all of the people who are down on their luck and not just cancer patients.

I am glad I have this place to come and express myself and get those words to help carry me along.

Carolyn

Bill · 05-29-2009, 12:56 PM

We're here for you, Carolyn, with our thoughts and prayers and all of our warm wishes for a more effective treatment for you.

Patb · 05-29-2009, 01:52 PM

Carolyn
I also can't give you any advice but my prayers
and thoughts are with you that there will be a
new treatment that is right for you. I have read
lately about the triple treatment, I guess its just
which three. Sounds like you have a great Dr.
to look into this and give you advice. Take care.
Patb (also from South Fla. in the winter, Naples)

Kim in DC · 05-29-2009, 01:52 PM

You didn't say where your mets are located. I take it you have bone mets because of the Zometa. Have you tried cyberknife/radiation?

Kim

Julie2 · 05-29-2009, 04:24 PM

Carolyn,

Are you thinking of Herceptin-DM1 trials? I am thinking of you and hoping that whatever treatment you decide will be a magic bullet for you.

Julie

caya · 05-29-2009, 07:59 PM

Carolyn

I cannot offer advice, but I am sending you big hugs and know that we are all cheering for you. Your dr. does sound brilliant, I know that she will find the right treatment for you.

Keep your spirits up as best you can.

all the best
caya

Rich66 · 05-29-2009, 08:27 PM

Have you tried Tykerb with Herceptin? Faslodex?

flynny · 05-30-2009, 12:00 PM

Carolyn,

I can only imagine how scary it is for you and especially because you are a single mother. Just know this, there is always something new around the corner and with the advice of many knowledgeable women (and men) on this board you could have many other avenues to turn to. I pray for the cure and I pray for you and your son. I am sending you a big hug your way!

You are a survivor and we all love you!

Carolyns · 05-30-2009, 12:13 PM

Hi All,

Thank you for your support. I have had Tykerb w/ Herceptin and that held me for 3 months. I have also had all of the hormonals. As for TDM1. At first I was not able to get in because I had not had Xeloda. Now that I am failing Xeloda I can not get in because the open trials require that you have NOT had Xeloda. Frustrating! That is one reason that I think that there should be a compassionate care mandate for stage IV entry to trials. I mean what could it hurt, really?

My doctor is checking to see if there are any current open TDM1 trials. I think that I still qualify for the Heat Shock Protein trial.

I am so lucky to have responded to date and to be able to maintain my life while living with cancer in treatment. I want to continue to do so until the cure.

Thanks again for your support. It means so much.

Love, Hope, Peace, Carolyn

Rich66 · 05-30-2009, 06:43 PM

Others here have had some benefit reusing therapies which worked previously.
And new combinations of previously used agents might be useful as well:
http://her2support.org/vbulletin/showthread.php?t=39371

Sherryg683 · 05-30-2009, 08:25 PM

I am going to say an extra prayer for you tonight. I know how scared you must be with a young child. My daughter is 10 and I just cannot imagine not being here for her. I hate this disease so much..sherryg

Joan M · 05-31-2009, 06:56 AM

Carolyn,

I'm sorry that you're having to go through this again. It's really a rollercoaster ride, and I understand that. You're in my prayers for a new combo to get you back on track.

Best,

Joan

Lida · 05-31-2009, 01:55 PM

Dear Carolyn,
I know what is like to be tolerating a chemo and almost forget about "the deep valleys". I was tolerating Herceptin/Taxatere/Carboplatin pretty well, but had major progression in my 5th month (after good tumor markers a month before progression!). I just started Herceptin/Ixempra; that may be an option for you. Also Doxil/Herceptin was suggested by my onc and seemed to be pretty effective in a small study, which also said adding those 2 is not as cardio risky as they thought -average decrease in Left ejection was 4 percent. But, I still wanted to wait with that one. The Herceptin/Taxatere/Carboplatin is a good synergistic combinaton and it helped me though I had already had Taxatere and other Taxanes, so maybe it is another option. Yes, the t-dm1 seems promising, and I wish I could get it now, also! Lets keep plugging away, Lida

WomanofSteel · 05-31-2009, 05:30 PM

I will keep you in my prayers and hope you find your magic potion. I have been going through the treatments also, but there are so many out there and so many combos that I know we will be fine. Hang in there!

chrisy · 05-31-2009, 09:59 PM

Carolyn,
Sorry you are having to once again come up with a new strategy - it sounds like you have a wonderful doctor, one who is on the cutting edge and that is so important these days. There are new possibilities and reasons for hope every day. I know you'll let us know what your new plan is.

I really wanted to respond to the subject line of your post - out on the ledge. I think many of us can relate to this feeling. Every time we have a setback, we find ourselves peeking over the edge into the abyss. It is so scary, yet we do it over and over again (what choice to we have!?) then gather up the hope and power, stand up and step back away from the cliff.

I think it's very healthy to "forget" how dark the valley is. We are not meant to LIVE in those dark places, although you are right - we have to walk through them. And of course, we do not walk through them alone...