death

[HavahJ]

Does everyone with metastatic breast cancer eventually die from it? earlier or later? Did you ever hear of anyone with it who actually got rid of it? Feeling pretty blue. On top[ of that almost noone ever responds to my questions. I'm presently having a big M.S. attack because a cancer doc gave me the wrong kind of head radiation. This is my second different breast cancer which is metastisized into an inoperable skull tumor. I'm alone and having a really bad time. Bye

[sabpri]

I think I have read that there are cases of people with mets that have gone in to remission for more than 15 years, and there is a % (not sure what it is) that it never comes back. I am so sorry that you are feeling blue, and that no one seems to respond to your posts.

Wanted to send a Big CYBER Hug to you and let you know that you are not alone. They said I had Bone Mets, so I understand the whole mets nightmare. I am going to say that I will be one of those people who get rid of mets forever, because I beleive you should always err on the side of hope. Let's hope both of us will be in those good stats!

Sending Love and Hugs your way!

Natalie

[AlaskaAngel]

HavahJ, I'm probably not the best one to answer that question, but there are more and more people with bc, a fair number of them here too, who are passing the best "estimates" they have been given. Being alone can be hard when you are trying to handle bc, but I'm glad you do come here.

AlaskaAngel

[Bev]

Steph has done brain mets. Gina, Lolly, Tricia and many others are stage 4 and hanging in there. So sorry for any downturns. Please keep fighting for all of us. Bev

[MGordon]

HavahJ -

I commit to you right now that never again will you not recieve a response to a post. I may not be the wealth of information that members like Al from Canada are, but I will be here for you!

Take heart - Brain Mets are not a death sentence! Look no further than Christine Druther! Advances in medicine are furthering the battle every day! Drugs like Herceptin and Tykerb and treatments like CyberKnife and GammaKnife were not even available just a few years ago - and they are kicking cancer butt as I type!

But I also have to say that the medical profession is not your primary weapon! Faith, Hope and Love - and the greatest of these is Love!

I will pray for you tonight and until we "chat" again!

Love and Light

[Catherine]

Cyber hugs to you. Thank goodness for the computer and the telephone. I am sorry that you are having an alone time and a blue time. I am glad that you reached out to us. I do not post all that much, as I do not feel like I have enough knowledge to share. But we lurkers and small posters care about you.

Please brew a cup of tea or pour a small glass of wine and toast us and toast yourself. And Sunday morning call a good friend and continue to reach out.

All the best, Catherine

[lexigirl]

HavahJ,

I don't have an answer for your question but wanted to send you a big hug. You are not alone. We are all in this boat together. United we stand bc sister!

Hugs and Prayers,
Lexi

[tricia keegan]

Havah I'm sorry you feel so alone right now.

I don't have the info you asked for as I'm not as clued in as some of the other memebers here but just wanted to tell you we do care and I truely hope you're feeling better soon.
Please keep fighting,sometimes we need to go right down so we can come back up stronger and more determined.
Hugs
Tricia

[sarah]

Dear Havh,
So sorry you feel so alone and depressed. Where do you live? I am far from knowledgeable about cancer or HER2 but I am so sorry for not at least not acknowledging your posts. It seems to me that a lot of people on this site with stage IV and with IBC have survived a miraculous amount of time.
There's a quote that goes something like this "It's not the years that count but making the years count"
We are NOT our disease. ask your doctor about anti-depressants and get on an exercise regime at a gym - that way you'll interact with other people and boast your - oh chemo brain ! - those positive feelings.
My father was a doctor and in my teens - typically of teens I wondered why I was here and what help could I do for the world and therefore felt useless and was 'depressed." well my dad took me on his rounds which included people with a muscular distropy that made their arms and legs blow up like a balloon and they had trouble talking and it was hard to understand them. well they were so postive - one had written a book and been rejected and so was rewriting it - he was writing it with a pencil attached to his forehead that he taped out the letters. well their spirit of optimism, given the overwhelming difficulties they had, made me feel if they could do it, so could I.
Therefore let me give you a big cyber hug and a push to get out there and help someone who has worse problems and less advantages than you have - helping others is one of the best ways of feeling better. Believe me, I know that one.
You have ltos of friends on this site who are there to help you through this difficult time. you are not alone. I'll look for your future postings and try to respond.
love and hugs
sarah

[Sheila]

Havahj
You are never alone with all of us here...we are all in this together, cheering each other on with each new advancement and report, and lending a hug to each bit of bad news...this disease is a roller coaster, I have been riding it for almost 5 years, 3 1/2 as stage 4....I never liked roller coasters, but once I climbed aboard this one (not by my wish), I vowed to myself to keep riding and not get off....it is the only thing I have control over...will I come to a time when I've had enough???? I hope not, but that is not in my hands. I have faith that this is part of a bigger plan for me, and accept it as such....if I am able to help one other person by having this myself, then my mission has served a purpose.
We are all with you, because we are all in the same boat. Sending you a big hug and lots of caring love.

[Mary Anne in TX]

Hi Havah!

Sometimes this cancer thing is really the pits! I spent a lot of the first year in fear that it would spread, that I would die, that no one cared, all kinds of stuff! I have just decided to believe in out running this thing by thinking positively, having faith in God and my great doctors, and just living each day as it comes.

I have this silly thing called "dolphin moments". One morning when I was particularly down and depressed, I looked out the bedroom window (we live on a canal) to see a dolphin swimming back and forth. I got so excited! I raced downstairs to get a better look. My depression was gone. One of God's little critters had stolen my heart! It was the first time I saw a dolphin in the canal. Since then it has happened a couple of more times. (They usually stay out in the bay) The next time there were 5 dolphins and they stayed right behind my little condo fishing for about 5 minutes. I was in heaven.

After that first incredible time with the dolphin, I noticed that God was providing "dolphin moments" each day. Sometimes it was a call from a friend with some good news or just a warm hello. Sometimes it was a few minutes on the phone with one of my grandchildren. Sometimes it was a sweet song on the radio or a movie on TV that touched my heart. I began to pay closer attention to those "dolphin moments" each day. Kinda - "stop and smell the roses" I guess! It has really worked for me.

May today be a dolphin day for you. May God bless you with some of his amazing creatures or creations that can lift you out of the blues. Lots of love and hugs to you, ma

[kimber]

I have no answers. BUT, I do have lots of love and prayers that I am sending to you!!!

- kim

[rinaina]

HavahJ, like all others here, I lend my support to you. Please try to replace your depression with positive thoughts and feelings. I know for a fact that a positive attitude and belief can make such a difference in a person's health while depression and stress deteriorate a person's health. I know it is difficult and we all have our down moments, this is normal, but as someone else said, we have to pick ourselves right back up and focus on beating this disease. For me, it is mind over matter, I refuse to believe that this cancer is going to win out over me. I am too much of a fighter. And let's not forget all the great drugs and new findings now and in our not so distant future. Please don't give up hope. I am sorry you had problems with no responses here in the past....I don't think that will happen again. Everyone here is so supportive. I hope all the responses you received will help strengthen you and your outlook.

[Andi]

HavaJ, I am sorry you are feeling blue. We have all been there at one time or another. I just recently had a recurrence, so have been reading up a bit on things. In Dr Susan Love's book, she says that recent studies suggest that in certain situations where the recurrence is limited and the woman can be rendered disease free with multidisciplinary treatments, 3-30 percent of women with metastatic breast cancer can be put into remission for over 20 years. Well, I'm hoping and praying that you and I will both be one of those 3 - 30 percent. I know it's difficult when life throws us a curve like this, but try to think positive thoughts and make every day special in some small way. You will be in my prayers.

[Sherryg683]

I am so sorry you are feeling so alone. I can relate. I am surrounded by my husband and 2 lovely children and still I feel totally alone. I sometimes just don't want to come out of the covers. Then I have my good days when I feel fresh and ready to fight. I have to believe that not everyone dies from this disease, it does take from us so much anyway. We just have to get up and put one foot in front of the other, take a deep breath and live. Just wanted to let you know I am thinking of you and praying you feel better..sherryg683

[suzan w]

a quick message of "Hi" to you! I know sometimes it does feel like we are completely alone with this...even when surrounded by friends and family! Glad that you reached out because it does show that we are never really "alone"...we have each other!!!

[Adriana Mangus]

Gordon and Sheila: What a wonderful response you two posted to HavaJ.

HavaJ: We all have been fighting, do not think too much whether you are going to live or die.. It does not matter, you need to live your life to the fullest....NOW!!! You need to concentrate and all those good things around you, whether is friends, family, children, parents, etc.

Read Stephn story, she's from the Washington area, and she's such a nice lady, positive and for someone who's been through a lot!! you would never expect this type of attitude, desire to get better and stamina to continue living.

Do not give up, and please stay in touch I have never seeing you on the board, or I would have responded to you long time ago...I'M SENDING YOU A BIG BEAR HUG.

[Sandy H]

Havah, as others have said, I am sorry no one responded to your post. I don't remember your post but I doubt if it will ever happen again. I don't have brain, organ or bone mets however, I have been battling skin mets to the chest wall for 5 years now. They are mets on the skin of the chest. I started out with Inflammatory breast cancer, ER/PR neg. but Her2 pos. stage 111b. I was given NO survivoral time 6 years ago!! Well, I am still here with only skin mets which are stable with Tykerb/Xeloda. The only positive thing I had going for me I was Her2 which allowed me to use Herceptin. Don't get discouraged with the stats as I did at first. There are new drugs coming out and treatment options are improving. I can suggest you need to know your body and let your doctor know when something doesn't seem right. Do your research for yourself and be in control like Sheila said. You will get some good help here so keep in touch. Sending you another cyber hug. Sandy

[mslinda]

Dear Havah:

I don't usually post much, but try to come to this site every day. I am sending you hugs, and I promise to pray for you often. You just keep up your spirits and tell this cancer you are going to beat it.

Linda

[Kim in CA]

Dearest Havah,

I'm sure sorry you have felt so down lately. I haven't been posting much these days, and always feel badly to find out someone has been feeling so alone. Please know that you are not alone and we really do care about all of our Her2 family. I have metastatic BC and I'm still here, ten years next month!

Sending you a cyber Hug from California, Kim

[sunny Lisa]

Hi, I saw your post and wanted to respond. I feel the need to reach out because I know how it feels to post and wait for responses in those times of great need. I know how it feels to have people offer to help (let me know if I can do anything) then just walk away...and if I said "well there IS something..." then they didn't just walk away they RAN! I have found that lack of support and lonliness is at times more devistating than the cancer. All we have is this very moment. The future does not exist for anyone. I try to live in the moment and it has helped. I am sending positive thoughts your way. I do not know you but we are connected. You are not alone. Big cyber hug. Lisa

[Barbara H.]

Hi Havah,
Three years ago in 04 this coming May I had a recurrance ( initial cancer in May 98, stage 2a or 3 b), one met to the brain (3cm prefrontal lobe) extensive liver, lung, skin, lymph involvement through out. After brain surgery, I was put on Herceptin which wiped everything out. Unfortunately, my tumor markers started to rise about a year ago and in March scans showed that I had three small bone mets. Navelbine helped but they have still not disappeared. My next step is to try hormones, because there is a possibility my cancer has gone from horomone neg. to pos. My bone mets are too small to biopsy so we will try the hormones, check tumor marker response and scan. At the moment I am off all chemo except for Herceptin and Zometa. My head is cancer free, but I am currrently recovering from my third surgery to remove radiation necorosis. In this regard, Steph N. and I have had some similar brain issues.

Through all of this I have continued to teach third grade and live my life. I just went back to school two weeks after surgery and my staff colleagues presented me a hand engraved sterling silver bacelet that says "Wonder Women." I do feel very supported at work.

I have read that about 1 to 4 per cent of stage 4 breast cancer patients have gone into permanent remission. Of course, I would like to become one of them, but I just take one day at a time.

Best wishes to you, and hopefully we will see new and better drugs in the future. Tykerb has helped some, but I don't think we will see the results from this drug that we have seen from Herceptin.
Again, good luck and thanks for starting this thread.
Barbara H.

[IRENE FROM TAMPA]

Havah

Just know that we are all here for you, as you can see from the responses you received.

No one can really answer your question about death, but just know that cancer does NOT have to be a death sentence. Just keep up your fight and your spirit and enjoy your life. Try not to let yourself get depressed (not good for your immune system and its very important to keep that strong.) I know that this is easier said then done as we all have our days when we are down

Just remember, when you are in need of spilling your feelings, come to us. We are all here to listen.

Take care

[TriciaK]

Dear Halvah, You have received some wonderful responses from some wonderful people, and I hope they have lifted your spirits. You are not alone! I am so glad you reached out and so glad for the responses you've received. I am an example of the fact that BC is not a death sentence. I am 77, and have been fighting BC for over 20 years, since 1985, when I had a bilateral mnastectomy. I've had two reoccurances: the first in 1990 to my spine, which became NED (No Evidence Of Disease) after about 5 years, and to my lungs in 2004. The last mets were her2, and estrogen and progesterin positive. I was on navelbine 6 months with herceptin and femara, then just femara after 9 more months. My last two PET/CT scans were NED, and I have another one due the end of this month which I expect to be NED, too. BC may eventually kill me, but after fighting it for all these years I am no longer afraid and I know I will be around as long as the Lord has use for me to be here. I have absolute faith that the next life is even better than this one, and I am looking forward to death as the next great adventure. Hang in there, dear girl! Stay positive---as I've said before, fear and faith cannot co-exist. One will cancel out the other, so the trick is to stay positive and do all you can to increase your faith. I hope you know now that this wonderful website is full of caring, loving, knowledgeable people. We have been through what you are going through. We understand your pain and fear. When we say they will pray for you, we really will. Let us know how things go. Hugs, TriciaK

[eric]

Havah,

There's no question that disease is scary, but hang on to 2 facts...

1: there's so many great new drugs and new discoveries that have dramatically accelerated what has too long been a slooow process. The fast track is here and breast cancer is leading the ways because of the power of so many vocal woman!!!

2: although I beg for a cure for my wife and all of the other wonderful people on this site and others fighting this disease, there's a second acceptable option that I believe is very close...that this will soon be a managed disease like diabetes. I find this helpful and I hope you do as well.

Eric

[Vanessa]

I am also sorry that you are feeling alone. I wanted to let you know that I am stage iv. I was diagnosed last June and by September, I was NED. I have been really afraid, also, but am trying to be hopeful. I have been encouraged by the stories of many of the brave ladies on this board who are stage iv and are doing well. I hope you can get some encouragement from us, also. You are in my thoughts and prayers.

[Hopeful]

Havah,

I don't know the answer to your question, but I can tell you I met a bc patient at my onc's who has been living with bone mets for 20 years. I also have a friend with liver mets (which have come and gone) for at least 12 years. So, there is hope for extended survival even with stage IV disease. I hope that you are feeling better soon. You will be in my thoughts.

Hopeful

[Ceesun]

Dear Havah, I want to echo all of the good words of wisdom-they truly are-on this website. Yesterday, I had a wonderful day with my new grandson, daughters, son in law and husband. Hold on to those types of moments-we can all find our joys in life, still, I am afraid too, but we all only have one life so let's do it the best we can. Love, Ceesun--Cathy Stage 4

[MGordon]

Havah -

I'm just curious - how much of a support system (outside of this website) to you have? Married? Does your Primary Care Giver need help/tips? Is there anything I can do for you beyond posting?

Love and Light
Mel

[SusanV]

Havah,


In this battle you are never alone. We can all share in your pain, fear and feelings of despair. Primarily because we are all going through similar feelings at one time or another. I just wanted to share with you a personal story regarding your question about death. My maternal grandmother had early on-set breast cancer in her thirties (like me) years later there was additional breast cancer in her other breast. She had both breast removed. Fast forward her life 50 + years. At 87 she passed away, just 2 months before my first child was born. I was able to go to the hospital after my dx (this August) and request copies of her pathology reports and medical records. (which were now on microfilm) She passed away in 1997. Yes, her disease had spread, and was the absolute cause of her death at 87. But my point is that she held this beast at bay for 50+ years. There is HOPE !!!! Find some and hang onto it at all costs. Some days that is all there is.

Thinking of you fondly,

[Jean]

Dear Havah,

I felt so sad to read your post - you are not alone. We all have our blue days
that is only normal. This is a difficult battle we have but we are also united
in information, support and encouragment. Never believe for a second that
you are alone....just reach out here and we will help you smile.

Keeping you in my prayers.
Jean

[Diane H]

Dear Havah, I want to add my hugs and hope to all the others. It is a hard road you are on and I wish you health. BIG hugs, Diane

[chrisy]

Dear Havah
I'm sorry you feel lonely. I think we all do from time to time, lonely and afraid and angry and sad. I don't know the answer to your question, I think (or maybe it's hope) the picture is changing. I do know that SOME people with metastatic disease do beat it. Why not us? Further, more people are living with it as a chronic illness for longer and longer. It is my hope that we can keep it at bay long enough to see a cure.

In the meantime, today we are alive! Although I certainly get down from time to time, I try not to focus on death. I'll feel pretty dumb if I live another 40 years but waste it!

I also agree with Sheila and Mel...the real answers are beyond medicine.

Please take care, you can tell from all the responses that you are not alone, you are held in loving thoughts by your friends and sisters here.

Chris