Update please on Joy
 

I haven't seen any new posts on Joy for a while and have been thinking of her so often. Keep praying for some good news to pop up about our "joyful", brightest smiling sister.

Re: Update please on Joy
 

Found her last posting on April 26 from the Members List. There's no e-mail address for her.

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It is funny how quickly we can gain a habit. At least this is a healthy one. Every wednesday, once i realize it is wednesday-you know how that is-i hope, I kick it in for all of us.

I have been missing everyone and thinking about so many of you and following your updates.

I would like to share mine as I am very scared and sad. I have been on Tykerb and Herceptin for 6 weeks ish. Both of which I have been on before and had progression, but never had combined the two.

In the meantime I have not been feeling well. My whole torso feels tight and uncomfortable and sharp pains plague it frequently. I have rationalized it to be so many other things, but today's vist to the onc confirmed, at least by physical exam, what i was fearing. My liver is very swollen. Digestion is weird (full too fast, nothing sets right). We don't know 100% if it is irritated or mets freaking out or what. Markers had come down and then went up a little and enzymes did the same. They have all been worse, but it is the wrong direction. Bilirubin is good and A/G is a smidge low.

So, this is yet another treatment that has not worked. Epirubicin/Cytoxan worked, but we are hesitaant to go there again so quickly. I think that I am no longer her2 pos and that is why DM-1 failed and herc/tyk maybe failing. I am scared, scared, scared. Scared that no treatment is going to work any more, scared that I will never feel well again, scared that just when everything else in my life is exactly where I have always wanted it, that i will be taken.

Any thoughts or success stories after liver swelling would be SO appreciated. Tips or tricks for taking care of this are also very appreciated. I eat a lot of organic produce and grains-a little ice cream now and again-I'm only human. I have been supplementing with:

Milk Thistle
Fish/Krill Oil
Reishi
D
cal/mag
probiotics
lecithan
B's
just adding IP-6 again now
and adding Shitake/Maitake too

would really like to add Vodka today, but probably not a good idea

So Eric, Caryn, Sheila, Gemma, Irene, Marie, Ed and everyone who needs parayers or not-I am sending them with tremendous love and admiration.
__________________
with love and gratitude,
joy

dx stage I 2/2000*er/pr+; her- per IHC*lumpectomy*4 rounds A/C*30 rads*tamoxifen*dx stage 4 5/2002*huge mets to liver*tiny mets to lungs*stopped tamoxifen*5/02 taxotere/xeloda*her 2 checked with FiSH-her2+++herceptin *2/03 stopped chemo femara w/herceptin*zolodex*04 switched to aromasin w/herceptin*05 high estrogen tx*11/05taxol/carbo*7/06 stopped chemo; megace/herceptin*9/06navelbine/herceptin*5/07tykerb/xeloda great response*4/08 progression in liver; ooph/ faslodex /herceptin
6/08 began Herceptin DM-1
9/08 progression

Re: Update please on Joy
 

Re: Update please on Joy
 

Waiting to hear some news too...hope all is well. XO Suzan

Re: Update please on Joy
 

Oh Joy - it is so good to hear from you. Give this combo some time honey, if not are you a candidate for the Her/DM1 trial.? I did wonderful on that. It actually got me NED for the first time ever. I am just so sorry that you have to feel so lousy along the way.

My prayers and thoughts are always with you my friend.

Take care of yourself and you are NOT going anywhere YOU are not ready for yet. Just keep that thought and pass healing messages through your body.

we all love you girl.

Re: Update please on Joy
 

Thinkng of you Joy.
Blessings
Hermiracles

Re: Update please on Joy
 

I hope no news is good news. Positive thoughts to you, Joy.
Lori

Re: Update please on Joy
 

Joy,

I have been thinking of you. Hope to hear from you soon.

Amelia

Re: Update please on Joy
 

Thinking of you Joy.

Karen in Colorado

Re: Update please on Joy
 

Joy and jennifer,

We have held a vigil here for you during these trying times. May God hold you closely and deeply and softly in his love for you. We miss you but know you will always be here with us. Just sending you our love tonight, unconditionally.
Love,
Vickie

Re: Update please on Joy
 

Bumping this up. Any new's on Joy??? Thinking and praying for her.

Re: Update please on Joy
 

bumping it up

Re: Update please on Joy
 

Still no news? Can anyone call her or her sister? Worry time......

Re: Update please on Joy
 

Hi Barbara -

I just emailed Joy's sister to ask about her. I told her we were all praying that everything is going ok for her.

Hopefully hear back from her soon or she may post on site.

Re: Update please on Joy
 

Joy and Jennifer, just to say I am thinking of you, hoping that no news means you are too busy. I would love to see Joy's smile again. Michka