I Am So Upset

[SoCalGal]

My heart is broken, my head is spinning, I cannot stop the waves of grief, emotion and dissappointment.

"Overall the findings are consistent with a worsening metastatic process."

This is from my PET/CT. My oncologist wants to change me from TYKERB/xeloda to TYKERB Carboplatin & Gemzar. He said it's a more potent combo than using Navelbine, which is what my 2nd opinion doctor said he would do if I failed on the Ty/Xeloda.

(This second opinion was from 3 months ago when I was first dx with mets. My onc says CArbo/Gem is more potent combined w/TY. Last year, a different 2nd opinion doc per my uber-surgeon, said she would put me on Carbo/Gem as a preventative, assuming that I had mets. Since I did not, all docs said to "just" do radiation, which I did).

My onc says that he still thinks TYKERB is a great drug, to stay on it and let's add in the other 2 drugs. He said I could still get a remission and that I'd stay on this combo for 6 months and then Tykerb only. I asked him what if I did nothing. He said that I would surely have progression and that is was still worth doing something that could give me a remission and give me life. Do I believe him? I don't know.

I asked him why not Navelbine. I asked him about adding in Herceptin or going back to Herceptin since that kept me NED for 20 months and then some. He said that there is no evidence that doing BOTH Herceptin & Tykerb is any better than Tykerb alone. I told him a LOT of woman in this community plus a couple from my support group use BOTH HRCPTN & TY. I asked him how many woman he had on this combo - answer was NONE. Many on the combo using Herceptin. ME on the combo using Tykerb. I have seen this doc since day one - 11 years. He's a pro - BUT. BUT, BUT? I don't have the strength for this research - for this process. I just want to curl into a little ball and never wake up again. This is an unimaginable effort - to take chemo to survive - to live in cancer-world. Most people don't even like to take an Advil.

For the first time I am glad my kids are away, they would be so saddened by this news. I know that I did not fail in any way but it always feels as if I am letting others down. Everyone rallys around, having such high hope, offering their prayers and support and then it doesn't work. It just feels like it's my fault. It's so unfair. I am so blessed and so cursed all at the same moment in time.

I am supposed to start this new combo on July 16th. I don't want to go back on a chemo drip. I don't want to try something new that will surely have bad side effects. I don't know if I can manage this all on my own. I JUST WANT TO BE NORMAL. I WANT MY LIFE BACK. --Flori

[MJo]

I don't blame you for feelings scared and if you want to curl up into a little ball and give yourself tight hugs, i hope you will do it. I'm sending you a cyber hug and if you have people around make sure they hug you too.
I don't blame you for wanting your life back. That said, it sounds like all your doctors expect you to respond to treatment. Nobody is recommending hospice. One of your doctors seems to expect remission. I bet there's a good chance you could go NED again. I know Gemzar is very powerful because two people I know are taking it. I also know that chemo sucks. Navelbene, tykerb, herceptin -- I don't know. I do know that sooner or later I have to accept what my doctor says if I trust him.
It sounds like you have years ahead of you. God bless.

[Linda L]

You need to go to the social worker at your hospital who will refer you to a psychiatrist who specializes in treating cancer patients. With all the wonderful antidepressants available, there is no need to suffer in mind as well as body.

[Jean]

Dear Flori,
I am so very sorry that you had this news. Please do not give up, you
have been so brave and have fought back so hard. The battle is not
over and with this nasty disease we have to continuously battle it.
Many of the woman on the site have had great results and acheived NED
results with your treatment plan. DO NOT GIVE UP.....Please know you are surrounded with many strong and brave warriors who are here for you.
Of course you feel devastated - but please realize this does not mean instant doom. Floi, maybe try to think of your treatment as your way of having control and you will stomp on this disease until you are once again NED....yes it will happen - continue to fight back and tell yourself each and everyday from now on you will SURVIVE!

Sending you a HUGE HUG,
Jean

[Esther]

Flori, I hear you. It is always devastating and anxiety filled when a treatment change is indicated. Hang in there, the new combination may be just the thing for you, and once you settle into the new treatment routine things will seem better.

I long to feel "normal" too, and achieve some sense of that doing the things I love, outdoor activities like water-skiing, snow skiing, rock climbing, etc.

Do you have any hobbies or things that you are passionate about? Sometimes even reading a good book will transport you to a nicer place.

[dhealey]

Flori, Hang in there girl and bite the cancer back in the butt!!!!! Nobody likes change, but sometimes change is good. Sounds like your oncologist knows what he is doing, but you also have to believe in yourself and him. For me I also long for being normal, but now I have a new norm - life with breast cancer, but the stubborness in me keeps me going and I try everyday to find a new "norm" Hang in there! All us breast cancer sisters are in this together. Lots of hugs from Debbie in North Carolina

[StephN]

Dear Flori -
I have been following your posts and am so sorry that this disease is not letting you alone.

Noticed from your sig that you are hormone neg - like I am. This is a bit unnerving in itself as we are more limited on ways to deter our cancer. Have you had a broncoscopy to biopsy those new mets? I am wondering if they could now be hormone pos.

There is always a reason that a treatment is not working, and that is related to pathology. Even without a biopsy (I did NOT have one for my extensive liver mets) it is possible to go on the attack.

When my life was on the line, I said bring it on - I am NOT ready to die. So a three-pronged attack was the plan. Two drugs to kill the cancer cells at different stages of division plus the Herceptin to shut down the cells that were not yet dividing. I instructed my body every night before sleep that this is what is supposed to happen. Let those drugs do their work.

This was not easy and my life is definitely not the same as before, but I HAVE a life. I know how hard it is to get up the energy for such a fight, but I felt it was worth a try and gave it my all.

Belive me there were days that I just mostly stayed in bed or on the couch, but I made it a point to get something done each day, concentrating on changing my diet and searching out healthy organic foods.

Some oncs are wimps when it comes to recommending aggressive treatments, but how else are we to combat aggressive cancer? Only one will win this fight, either us or the cancer. I chose ME.

I got on a treatment VERY quickly and this really calmed me down (as well as my family). Plus there was no support group for me then - I just had to trust my cancer center team and lucky for me they were good and on the right track.

The waves of grief will subside as you face this problem. The disappointment is immense, but you are not at the end of your possibilities.

[Mary Anne in TX]

Hi Flori!
What a deal. The pitts! You deserve better!!!!!
But it's what you got dealt and you can do it, girl!
Before I replied, I checked my little sheet that my onc. had done up for me when he gave me my 1st year plan. As I looked at it, I remembered that he had saved gemzar to use in case the Taxol, Carboplatin, Herceptin or Navelbine Herceptin didn't cut it. His little list has given me comfort so many times when the going got tough or I wanted to give up fighting(that hasn't happened very often, but it did for my husband who had trouble seeing me so sick). Anyway, when I got to doubting the "formula" I just looked at my little slip of paper with the plan and the alternates out beside them and decided that I wouldn't stop until all the possible game plans had been tried.
I do think we are all different and our cancer cells take different doses and combinations to work for us!
Flori, hate it, be mad, even be really sad, but do it!!!!!! Fight for all your worth and believe that YOU can get back NED!!! Somewhere inside there is that believing soul that seeks to fight back, just find her and get into action. We'll all be praying for you and believing with you for victory. Thank you so much for your honesty and for sharing your heart breaking news with us, but fight, girl, fight.
Lots of love, mary anne

[tricia keegan]

Flori I don't have any knowlege of these drugs to advise you but wanted to say I'm sorry you find yourself here but please do fight and keep on fighting. I can only imagine the shock you must be feeling but know we're all wishing you well in this and lending you strength to get you going!

[Believe51]

I have many bad things going on in our life too and have managed to keep the tears to a minimum but I did cry so hard reading your post! Maybe I should not be your cheerleader because I am NOT the one with this most horrific disease my dearest husband is, but my heart needs to answer your post. Please know that I just want to hug you and tell you that these feelings are normal. That even though I am not sick, that I too miss our life. He will never be the same and neither shall I and that in itself saddens me too much to bear. But you and him are still here, you are both still fighting. He too is at a very bad crossroad in his journey, he is tired of being sick, he is disgusted that this temple he took pride in nuturing has turned against itself.

But here we all are. We are here to listen and to cry, to cheerlead and to mourn. I am so sorry that the people I love in my life are so ill. The only power I have is to pray, to keep your journey softly in my heart. I have the power to listen and love unconditionally, I have the power to be a strong advocate for those of you who are too tired or too sick to fight that fight too!! Although I am NOT the one sick, I am here to do whatever I can to make this journey for you all a little lighter, to send hope and hugs, to help you know you are never alone. And we all do this unconditionally for one another. We must have hope and one of the few places I find it is here!! Please do not lose that HOPE, you have fought so hard to get here and I know it is discouraging, it is not the place you or hubby fought to get to!

Please know that I understand your feelings of despair and the depression that comes with it. I only wish I could give you the answers you need but I cannot. I can only be your friend and remind you that we are here, we love you, and today you shall remain in a special place in my heart! Call on anyone of us, anytime...always.>> Waiting For A Miracle & One For You Too Flori!!..Believe51....I still do and always will BELIEVE!!!

[Ceesun]

Flori- I know I was so sorry and deeply disappointed last year when I became stage four. But it is a year later now and things seem to be going well...I know my life is different and my stamina is low and I have had to make adjustments, but life does go on and somehow we all manage. I wish I could offer more comfort to you, don't give up...push on, friend. Cathy aka Ceesun

Flori--I'm so very sorry for your pain, but just the fact that you are posting means you're not ready to give up. And why should you? There are so many drug combinations that are here now and others on the horizon. Most important of all you have a family that loves you. It would be awful for them if you were gone out of their lives, so please keep fighting. Also, as someone above suggests, you might try anti-depressants to get you through the worst of this. I believe sincerely that this sense of hopelessness will pass soon. Much love from all of us.

[fauxgypsy]

Flori,
You will get through this. You are stong and brave and thoughtful and funny. I have been uplifted by your posts. I have dealt with serious depression in my life and got through it and you will too. You just need to hold on to the knowledge that this WILL pass. If you have to, curl up in in a ball for a little while and take it one minute at a time, one worry at a time. I have only started down this path ( stage 4 when I found out in February) and I am just beginning to understand the fear and uncertainty that we each have to learn to live with. It is okay to be sad. You don't have to be happy and upbeat all the time. Trying to deny those sad, scared feelings isn't good for you. I will keep you in my thoughts.

Leslie

[Kavy]

Flori,
I am so sorry you got this news, and I do understand how you must be feeling right now. It is very scary changes in treatment, but the change might be better for you. I am also Stage 4 with mets to liver and lungs. I had Taxotere/Herceptin for 6 months, and I was stable, nothing growing, but nothing get smaller either. Then my doctor decided to change treatment to Nalvabine/Herceptin. I was very disappointed, nervous and scared, but now I am glad he did, because my several small liver lesions are gone, and the small nodules in my both lungs are almost gone too, I just have one less than 1 cm nodule that is fading, and a stable lymph node. So this chemo is working better for me than the other one, and maybe this new combo will be better for you than with Xeloda. I understand your worry about not getting Herceptin, but Carboplatin and Gemzar are powerful drugs, I think more powerful than Nalvabine alone, and Tykerb is supposed to be better than Herceptin. If your doctor believes he can bring you to NED with this combo, why don't you give it a try? I am sure he will keep a very close look at your tumor markers, and you ask him to have scans again sooner. You can always go back to herceptin if this new treatment does not work for you. But you need to strongly think that it WILL work, and that you WILL go back to NED.
Flori, we all cancer patients, specially us Stage 4, want to wake up from this nightmare that we are living, and get our lives back to normal. But the only thing we can do is take one day at a time, and try to live our new "normal" life the best that we can, enjoy every moment, don't think too much, and fight with all we have. We will have our ups and downs, but we need to keep fighting always, doing nothing is not an option for us. Besides,you have a lot of treatment options to try. I also hate having to go almost every week to get my infusion, and I look forward for my week off, but now this is part of my new "normal life", and I got used to that. Now if my counts are low and I cannot have chemo for 2 weeks in a row, I get worried. Once you find the right chemo for you, the infusions and side effects will be a small price to pay for its benefits. You will get used to that too, we all do. Hang in there, and do not give up. Things WILL get better for you.
Praying for a great chemo response this time.
A big hug,
Karla V.

[Joy]

That is stinky, stupid news! I am sorry for the news and so empathize with your feelings. I am also glad you shared with us so we know how to support you. I love that your doc says that you can still get to NED (mine has NEVER said that). That is encouraging and you have a relationship with this person and he knows enough about you to see that YOU can make this possible.

I am excited that you are going to treat this differently and just blast this stuff out of you. These are good drugs with good track records for many and I am just thinking that you will be one. Also, combining them with Tykerb is novel and could really further its use for others-so THANK YOU.

You can do this, Flori and anyway; you ARE doing this!

I am putting you in an extra big bubble of blessed, white light from now on and know that many others are sending you healing love.

Also, if you want research done for you-please let US know what you would like to know and we will do it. Let us help.

I LOVE the new pic, what a gorgeous group you are.

[michka]

Flori,
My heart broke when I read your Post. You expressed what I often feel. You should shout and cry, like I often do when I am alone, because you are right: it's so unfair, it's so unacceptable and it's so difficult to go through pain. Why can't we live like before? But then what? Who is going to help us go through another treatment? Nobody except ourselves. You are right to scream for help on our forum. We are with you. Hoping you will find the strength, once more, to go out and fight with the new weapons the doctors are giving you. Take this new treatment and write each time you want support. I am with you.
Michka from Paris, France

[Susan M(PA)]

Hi Flori,

I'm stage I.V. fighting lung mets since March 2002. Off and on treatment. I often feel like quitting, but somehow I find the energy. I have other chronic diseases which cause fatigue, and I'm about your age in early menopause. I haven't been well enough to work full time since the 1980's. I've been often called an enigma, complicated case, i.e. difficult patient, get her out of my office ASAP.

Like Steph mentioned I think eating lots of organics veggies is so important, and as others have mentioned I've been trying low dose antidepressants which help to get one out of bed.

You mentioned research, maybe call the American Cancer Society, I have found them to be extremely helpful and kind, highly professional. Most people don't realize they have people who research for you at no cost, and will answer your specific questions. They will forward your questions to the research team and in a few days send you a packet of info and call. Well worth the call, very easy. I always learn something new about research and they will give you websites to check it yourself.
It seems very personalized, although ACS takes many calls. At the end of the call I was asked if I needed any emotional or financial support! Shocking! I was given a support meeting for stage I.V. BC at the Wellness Community in the Philadelphia area. Of course many of the ladies here are just as informed!

I also called a local hospital BC support nurse, she referred me to an oncology nurse at the hospital who knew the trials, she was also helpful.

"If you don't know your options, you have no options." Anonymous

Best wishes,

Susan M(PA)

[Andrea Barnett Budin]

Oh, Flori! I understand getting such horrible news makes everything shut down inside you. Your belief system is suddenly in jeopardy. You feel depleted of all energy. I remember being at that point and feeling like giving up. Even ever optimistic me. You hear what you perceive as a death sentence and you go to pieces. Of course. Who wouldn't. But then, you read the posts from Karla, Jean, Leslie, Grave, Believe, Mary Anne, Steph, Linda, Joy, Michka and me and you start to see -- this is a great opportunity. This new combination (and none of us wants a "new" anything!) could be your perfect secret recipe for success. Our bodies are each different, our bc is unique in so many variables. When you were NED no doubt your cortisol #s were low. You were in the zone. Living in sync with the Universe.

When I was at my all time low I asked right off for (medicinal) help. I knew how to meditate, and connect with my Essence, but I was weakened by emotions that were corroding my insides. So I got an anti-depressant. I got 1 Ativan a day, to help me sleep, to soothe my brain and elevate my mood, back to my old normal! I couldn't get there on my own for a while. That's okay. I asked for help, and I immediately received it. And these pills, along w/a sleeping pill, so my body could rest and recouperate, rejunvenate and recover all helped bring me back to my fighting form. I read voraciously any thing that fed my Soul. I'll give you my list if you'd like. Each word was a salve. Each day, as I awoke, throughout the day, as I lay down (which was a lot, so weakened by the life-saving chemo) -- I specifically instructed my body to heal, to vaporize my tumors, to bring me wellness. I was asking to be NED, without even being familiar with the term yet. I opened my heart and received this pure, unconditional and inifinite amount of LOVE from the Universe. It filled me up and showed in my countenance. I lived AS IF, *KNOWING* I was participating in my own wellness, calling my desired outcome to me with my every thought.

I took the fear, the anger, the blame, the resentment, the outrage, the sorrow, the remorse and allowed myself to experience it all, knowing it was a necessary part of HEALING psychologically. I felt the emotions, which gnawed at me and then actively sought to expunge them from my body and mind. I BREATHED. Taking in life-affirming air through my nostrils deep into my lungs and held on to it for a bit. Then, I conscientiously, free of all thought (NO MIND) gently blew the air and all that was unwanted out through my pursed lips, kissing it all goodbye, rejecting all that was toxic within me, hearing it whoosh out and away from me, going up into the stratasphere, spiraling like a balloon into infinity. I repeated that deep NO MIND breathing for maybe ten minutes. I became like a feather, floating up to a passing cloud and perching on it. I became The Witness, The Observor. In so doing, apart from you mind and body, you become further EMPOWERED. You become CONSCIOUSNESS. You and your Spirit become aligned. And that Oneness bestows the ability to heal and the feeling of blessed serenity. That too could be seen on my face. Others would turn their heads and ask me, somewhat bewildered -- What am I looking at? There's something about you... I felt joy and tranquility KNOWING I was drawing my desired dream to me. I lived AS IF it already existed, BELIEVING I was attracting it to me with my thoughts and images, and the power of their passionate energy.

I'm told others get this from Yoga, or the RIGHT psychiatrist, or counselor who can teach meditation and guided imagery. These therapeutic techniques, along with the right combination of chemo weapons -- all but guarantee success. Flori, I see you as a Survivor. I know your Spirit. I have been uplifted by it many a time, reading your posts and messages. I love you. You have what it takes. You just need a little help right now. And every one on this site is here to get your back, support you, help you through this. And you will get through this! We know you! You are beautiful (and I love your new picture). Take all the love surrounding you, at home, and on this site, see yourself with a brilliant white Light entering the top of your head and permeating down through your entire body, healing every cell within you. Keep that image. Use it, or any one that resonates with you, all day long. And please, Flori, keep on posting whatever you're feeling and doing and needing. Stay close. Sending you a giant hug and much loving, healing energy -- for strength and courage to fight on. We're all with you... ANDI

Can't post a face without thinking of you, Flori! You gave me that! You empowered me. May I now empower you BIG TIME...!!!!!!! (only allowed to post 4, tried to give you a whole big long line of smiley faces, though...) Make you laugh?

[SoCalGal]

Thank you, everyone. For all the love and for the support, understanding and reflection back to me. I am reading and re-reading your posts, words of wisdom, insight and feeling comforted by your posts to me. Thank you from my heart.

May God continue to bless us with the deep, rich, connection we feel and the ability to share love and support we so freely offer one another.

--Flori

[Odette]

Flori,

I love those pictures! I know you don't want to be a hero, but for some reason you were chosen to be one.
You are my hero.
For writing, for posting your pictures, for trying to figure out new ways to combat the cancer!
We all know this is crazy hard! We are all rooting for you and we all believe in you that you can do it!

Courage to me means to acknowledge and measure up our fears and keep moving forward in spite of them.
This is the sense that I think you are very courageous Flori.
With love,
Odette