scan results

Joy · 12-08-2008, 11:03 AM

Hi everyone, thank you so much for all of your smart advice on my last thread. I take it very seriously and I love that so many of you took the time to respond. I had my onc visit this morning and I am pretty upset. I have been on gemzar/carbo since October. This was the first scan since starting that. She said that the radiologist is deeming the disease stable, but that there is significant liver involvement. Her concern is that while the current tx is keeping it stable, she would like to see it shrink so as not to lose any windows of opportunity in the future. This was the pattern when I was on the herceptin dm-1 trial. So tomorrow I start Epirubicin and Cytoxan. She has actually wanted to do that for awhile and I have resisted some, but now it is time to get really serious I guess. I had A/C 8 years ago and HATED it. So I am having a very sad day in remembering that. I am also very sad because It seems like nothing is going to work. I haven't had a good response since Tykerb/Xeloda and eventually there was progression on that. If we get this junk to shrink then we will look at more maintenance type therapies (avastin, etc.). I just wonder if we will ever get there. I am so angry and sick and sad. Is this what happens when you are heavily pre-treated-things just stop? Is there any hope? My onc is going to San Antonio and I hope she comes back with great ideas. I have been reading abstracts too. And while there are good things it all seems so elusive. Like how do we get these things into our real lives, you know? I sure could use some good stories from anywhere regarding many treatments and still regression of disease. My head hurts, my eyes hurt from crying and I feel sick to stomach which is dumb as it looks like there will be plenty of time for that. Luca is being AMAZING . Sad and strong all at the same time. I never wanted him to see me bald and I am mad about that too. My family is awesome as usual. My sister is so great and my parents are so loving. I know I have so much for which to be grateful and yet today I have to admit that I am angry and jealous of people who do not have this to deal with. I know I am in the best place possible here with you all and I am getting choked up thinking about how much I love you.

TSund · 12-08-2008, 11:22 AM

Joy,

I just had to reply quickly. I am not the expert in advice on treatment, but I do want to say that I believe in you and your resiliency and your beauty of spirit. It has been thrilling to read of you discovering love in your life. You CAN beat this, I am sure of it. I know there are so many her that love you dearly, and I hope that their love and strength comes through to you.

It is a great thing that the radiologist says you are stable. Brava!
It is up to you if you want to be more aggressive yet right now to beat it back even more.

Meanwhile, breath, love, and believe...

Sending postive thoughts and prayers,

Terri

Sending you healing.

vickie h · 12-08-2008, 11:36 AM

Oh Joy! I am saddened to hear of this latest scan, but in my heart I feel that your Onc will come back from Texas with new ideas and perspectives regarding the next steps to take.
I. too, am progressing on Avastin/Abraxane. I have done well on Navelbine/Xeloda but eventually failed that also. My Onc is also going to Texas to see what can be done next. I have been on everything except Gemzar at this point. She is looking for a new trial. There is always hope out there. Please know that, Joy. Cry and feel sad, you are entitled to that, and then put your face to the sun and take one step at a time. I am bald for the 3rd time (funny how that is so important to all of us) and wanting my hair back. It is a miracle that I am still here...and with that said, MIRACLES happen everyday. I am praying for you and good news from Texas for all of us. The support you have will carry you far and hold you closely, deeply, safely on your journey. Help is on the way. There are so many new treatments and trials coming...so many more now than ever before. You are in my prayers and always have been. I'm sending you truckloads, airplanes, balloons filled with love and hope and encouragement and friendship. You are my sister and I love you very much. Vickie

ElaineM · 12-08-2008, 11:52 AM

Hi Joy !!
I am sorry to hear about your news. I don't have any drug advice to give you, but I am in your corner cheering you on.
You you want to talk to the radiologist and ask for suggestions. That person might have information that is not related to his or her specific field that might be helpful.
Do you want to get a second oncology opinion?
Sometimes even though a doctor is good that doctor
may not know everything there is to know about a health problem. There might be someone or something out there that can help you.
Does your hospital or clinic have a tumor board (a group of specialists who treat cancer) that can discuss your situation and offer suggestions? Do you want to ask to have your situation discussed at the tumor board?
In the meantime try to keep putting one foot in front of the other even if you have to do it slowly. It might be a good idea to spend a day doing something you love to do or spend time with someone you love. That might cheer you up a bit and give you the strength to keep going. I am sending you positive vibes from Hawaii.

Julie2 · 12-08-2008, 12:37 PM

Joy,

Will you be able to consider cyberknife for the liver mets?

Julie

Mary Jo · 12-08-2008, 01:17 PM

Hi Joy,
I have no advice and I wish I had the "answer."

I only want to hug you and want you to know I care about what your going through. I know that sounds so trite and non-important but it's all I can offer you. If my love and concern could change your world .... it would be changed......

Sending love and prayers to you.

Mary Jo

chrisy · 12-08-2008, 01:27 PM

Joy,

I'm sorry that news from your scan wasn't as good as you were hoping. You have every right to feel angry and sad and even hopeless, and jealous of those who seem to have all the luck - but I love how even still you mingle that with knowing how much you are loved and supported.

For now, remember stable is good. I think you are fortunate to have a doctor who wants better for you and is thinking of a future for you that continues to have options and open windows of opportunity. And although there is never a good time for less than great news, the idea that your doctor is heading to San Antonio with YOU top of mind is a good thing.

I hope to be able to pick her out of the crowd by the way she is relentlessly hounding all the experts for solutions for JOY.

Don't forget, there is always hope. Do not lose heart - just take it one day at a time.

Much love
Chris

Yorkiegirl · 12-08-2008, 01:50 PM

Joy I'm sorry to read that the news wasn't what you wanted to hear. I pray that this next treatment will give you what needs to shrink these buggers.

Prayers going out to you.

Soccermom · 12-08-2008, 08:16 PM

Dear Joy,
Like TSund I have enjoyed getting to know you and being able to "feel" your happiness... now I feel your frustration and sadness.
I wish that there was something more concrete that I could, besides give words of HOPE and support~ I just have to believe with our Her2 gang being in SA they will bring back some new options for you!

Gentle hugs,Marcia

harrie · 12-08-2008, 11:53 PM

Hello Joy,
I just want to tell you that I am going to sent as many peaceful and healing thoughts and prayers your way.
I love you, my heart goes out to you for all the support and hope we can all combine together for you.
One step at a time Joy.
Lots and lots and lots of love to you my dear...
Maryanne

mts · 12-09-2008, 06:15 AM

Dearest Joy,

Please know I am thinking about you and sending you sunny vibes from Florida.
Hang in there - Lean on your dear family for support, and all of us as well.

XO

Maria

rinaina · 12-09-2008, 10:43 PM

Joy, I don't blame you for feeling the way you do. Please try and be strong. You have endured so much and have percevered a lot. Don't give up. You are entitled to have bad/sad days....my goodness, we are only human, but you have to remain somewhat positive. If anyone knows this it is you. You have excellent doctors and I just know that things will take a turn for the better in time. Hang in there. Sending good wishes, prayers and hugs your way.

Pam P · 12-10-2008, 04:08 AM

Joy, I'm sorry you are now in this place of wondering what will be the next best treatment for you. It's great that you are stable. So you are in a good place there and your onc. just needs to decide on a great combo to keep you there & hopefully kick it all back to NED. I am holding good thoughts for your next treatment combo. And I'm hoping when the fear and worry comes over you that you can let your friends, family and the support here surround you with peace and hope.

jones7676 · 12-10-2008, 06:01 AM

Oh Joy,

I am sorry to hear that there are problems for you....believe me when I say I understand how you feel. Despite my positive results on the brain met...I will be calling my doctor this morning and doing a post on here after I talk to him. I understand your frustration and pain.

However, don't lose your hope. Stable is better than it could be....try to focus on the good and hope for good results from what they find when they find it!

I will be thinking of you and thinking positive.

MJo · 12-10-2008, 08:00 AM

That combo you are getting sounds powerful, and I bet it does the trick. I know what a fighter you are, and to have an oncologist who is an aggressive fighter alongside you is a good thing. Bald is beautiful. I was beautiful when I was bald. Happy holidays and many more to come.

Jean · 12-10-2008, 09:22 AM

Dear Joy,
Like everyone posted before me, it is not the news we wanted to hear....

Fighting this disease is a difficult battle, hey they don't call us survivors for nothing.

You are so dear to us Joy - and so loved. Your pain is ours also.

Now, on the up side - your dr. sounds great! Having been in S.A.B.C. I have seen first hand how the dr. discuss different aspects of treatment and the information is powerful. With that said, let's wait to see upon you Dr return what course of action will be best for you....do not dispair or give up....certainly you feel let down, isn't that normal. Allow yourself to feel those emotions.

You are truly blessed in that you have a great loving & supportive family. Joy take one day at a time and give yourself some time to absorb the new treatment information..

I am sending you a huge hug, along with my prayers.
Jean

Believe51 · 12-10-2008, 10:54 AM

Wanted to write to let you know that I am thinking of you as you proceed forward. I like hearing the word 'stable' in your journey since this will help to get you where you need to finally be. It does get tiring trying new drugs, failing, trying something else, etc. One does wonder if they will ever get there, but many do, Joy.

There is a wonderful team resposible for getting you there, you also have such a terrific caregiver team. Your life is full of love and laughter with times of feeling down, which is normal. It is alright to get down but as mentioned before, you cannot get stuck there. You are pure and true to yourself and your life has had many changes recently and through time. I admire your spunk, your drive and your thirst to trudge through. One day, one step, one breath at a time. Put your mind there and one foot in front of the other, keep plugging and never lose hope.

I could not respond to your first post 'My 'Lil Latte Pardner' since I have been a bit stuck myself and do not like to reply to detailed posts when I feel like that. Thankfully it does not last too long. I needed to tell you that I love you each and every day and not a latte goes by without first toasting a prayer or well-wishing to my Joy! If I had the power I would take away that sadness for a moment so you could clearly see that fortitude you endure and what hope we all have for you.

As for your love, Luca, I think the love this man has for you will let him see beyond the bald head. Whenever I look at a hairless head I look deep into their soul, I see a fight and I say a prayer. I see courage and faith, I see a long journey, I wish for a happy ending. I feel Luca will see the same. Although this is a concern for you I am hoping those feelings will lighten up for you a bit.

Keep us posted when you find out more details about your regime. You are so good providing those details that help us to know the true 'Joy' in all of our lives. Lots of love, Sweetness, I'll have a latte in a little while on you. Keep fighting the good fight that you are. I will see you in NED My Love!!>>Here is a huge cyber-hug....Aaahhh. Did not mean to squeeze that hard, I just love you so much!!>>Believe51

PS: As Julie mentioned, are you willing to do the Cyberknife?? Spheres?? From who I have known doing the sphere adventure, their response were fabulous.

harrie · 12-14-2008, 08:44 PM

Joy...just thinking of you...wondering how you are doing....
Maryanne

doh2pa · 12-15-2008, 09:55 AM

Hi Joy,

Well, I think you and I are in a similar boat, sister. Remissions are getting shorter and shorter and my onc is running out of things to try. So I started Doxil in early November (it's a once every 28 days) and I hate it. My quality of life is horrible on this drug and I will not get a third treatment (working or not). My choice.

So here's my encouragement. I am lucky to have a doctor for a husband. Everytime I have a treatment decision coming up, he scours clinicaltrials.gov to look for relevant trials. The last time he looked was June. He just looked recently and was ASTOUNDED by the number of phase I and phase II clinical trials for liver mets. According to his estimate there are at least 4 times the amount of trials that there were in June. That means CHOICES!!! That means more researchers looking for that elusive "one thing" that will work for me and you. I myself am trying to get my liver enzymes down to get on the DM-1 trial. So over the holidays we plan on going over all this data he is accumulating, throwing out the cookey stuff and narrowing the trials down to a few that make sense. I will pass on what we find to you and maybe one of them will be right for you.

I know you don't want to do Cytoxan - I had the same reaction for Doxil (adriamycin in drag!) but every step forward keeps us in the game and I really do believe that these researchers are SO CLOSE.

So let's make a pact, girl, to hang in there together. Cancer sucks, fighting it blows, and its so HARD. So many times I want to give up, but I keep it going for the people who love me and would be devastated by my death. You have people who love you too and their life would be diminished without you.

You deserve to cry and be mad. And if your heart is really telling you that Cytoxan is not right for you, maybe it's time for a fresh look. I have set up appointments in January at University of PA and Memorial Sloan Kettering in NY with other oncologists. I love my onc now, but he seems stuck and out of ideas so it's time to put myself out there and see what happens. Might you consider doing the same.

I am giving you a big cyber hug. Feel free to e-mail me privately. I will keep you posted on what I find.

Hang in there

StephN · 12-15-2008, 11:54 AM

Dear Joy -
Donna wrote a beautiful message and you might have a good ally in her doctor hubby's research.

NERATINIB - I don't know if you have been too heavily "pretreated" to qualify, but I like those result stats. Maybe your onc saw that presentation.

I know just from what I learned from the drug manufacturers' reps at the cancer researchers meeting in April that the number of new drugs coming out of phase 1 trials for HER2 breast cancer is boggling (as Donna's hubby discovered).

Knowing you have a lot on your plate with your kids and Luca and his, you need to save a little energy to heal and fend off the fear. We REALLY do need some peace and quiet time for our bodies and minds to process the many possibilities forging ahead.

This is the time your family needs to "give back" to you, even though I know from personal experience that we do not like to be treated as a "sick" person. I learned to look at that time as "down time" when I could divert some of that outgoing energy to my innermost needs.

Let us know how it goes with your onc visit, lovely lady.

Wishing you a holiday season of Peace, Glad Tidings and, most of all, JOY!