Calling ANY Stage IV Survivors

[Marie G]

Please write a quick inspirational blurb about being a stage IV survivor so my husband who is HER+ and stage IV, we could really use the inspiration only you can provide!!!PLEASE!!>>Waiting For A Miracle>>Marie G

[chrisy]

Hi Marie,

I don't feel like my story is particularly inspirational....but I certainly do know the feeling of despair getting a diagnosis of Stage IV cancer. It's devastating. The good news is, there are MANY inspiring survivors on this site, and I'm sure you will hear from them.

Don't ever forget, you and your husband are still the same people - you will find and use the strengths you already have to face this.

I too, had a surprise Stage IV diagnosis, in Sept 2004, with extensive mets in my liver. I sailed through six cycles of Taxol/Carboplatin/Herceptin, and have been in remission on maintenance Herceptin since then. Through this, I have continued to work full time, travelled all over, hiked in the Grand Canyon, partied in Vegas - basically "doing my life". I love my life, and it's definitely worth fighting for, so I will continue to do so. I expect to be around for quite some time yet.

There is always hope, and today there is even more hope!

Do not pay any attention to anything published more than a few years ago. Those statistics are old news. With new targeted therapies, such as Herceptin, more and more oncologists are beginning to think in terms of managing this disease as a chronic condition - for many years. Believe that this can happen for you. My hope is to keep going long enough for them to REALLY figure this out!

10 months after being diagnosed with Stage IV bc I did the Relay for Life. At first I didn't think I should qualify to wear the purple "survivor" shirt and walk in the survivor lap. Then I realized that you only have TODAY to survive. So I put on the shirt and declared myself a survivor!

Please do not lose heart. There is so much hope. Just take it day by day.

You'll find this is a really wonderful group here, lots of very knowledgable and caring people. You are very welcome here.

Much love,
Chris

[mbt1963]

When I was diagnosed with stage 4 BC at the age of nearly 39, it was everywhere except the brain. My Onc tried to reassure my husband (of only 6 months) that in addition to Taxol and Herceptin they would do everything to keep me comfortable. My outlook was very grim. However, I'm stubborn and if you tell me that I can't do something (like survive BC) then I'm out to prove you wrong. Within 6 months the cancer was confined to the bone only and showing signs of remission there.

It's been over 5 years and yes I've had the cancer come back but only in the bone where it's more manageable.

With the current medications and treatments, a death sentence has become more of a chronic disease that I can live with.

[Lolly]

My story is not typical to say the least, but I hope it serves to let others know that you just never know how YOU will respond to treatment and how long YOU will survive:

http://her2support.org/vbulletin/showthread.php?t=25973

[Kim in CA]

Dear Marie,

Being stage four certainly isn't what it used to be. I am currently on maintenance Herceptin only and have excellent quality of life. I try to stay as active as possible and find the more fit I try to stay, the more energy I have.

I am going to my first endurance ride of the season in two weeks and have been riding about 25 miles a week in prepartion for this event. Not too shabby for a stage four Grandma!

Love, Kim in CA

[Barbara H.]

Hi,
I had extensive mets everywhere three years ago. Now it is confined to the bone. I work full time as a third grade teacher.
Good luck,
Barbara H.

[Vanessa]

I am entering my one year anniversary as a Stage 4 survivor. I had surgery last April and started chemo in June. My chemo was stopped in November of last year and I am on weekly maintenance of Herceptin. My energy level is certainly much better since I stopped chemo and I have been walking about 12-15 miles per week for the last 6 weeks. Both my heartrate and blood pressure have gone down. I am looking forward to many more years. Best wishes to you. I am also looking forward to 2 grandchildren in June.

[myraazzopardi]

Hello Barbara
You sound incredibly strong. Do you do anything in particular to keep so healthy and positve like special diet etc.

[Barbara H.]

Hi,
I had a 3cm frontal lobe tumor to the brain in May 04 along with extensive lymph node mets, in addition to lesions in the liver, lungs, and skin. After my brain surgery and stereotactic radiation I started Hercepin alone in July 04. I only started with Herceptin because my daughter was getting married. Fortunately, Herceptin worked for me and I remained NED until a year ago when I develped mets in the bones. Navelbine was added. I responded, but I am still not NED. In addtion, I had to have brain surgery, a year ago in December, and again last December for a possible recurrence. It turned out to be radiation necrosis.

I still remain NED with the exception of the bones. Although I am ER PR neg., I just started Faslodex to see if I will respond. I had a bone biopsy but they were not able to figure out if the ER PR has changed. I will continue on the Faslodex as an experiment for the next few weeks. If it doesn't work, then I will have to go on another chemo, probably Tykerb. I am also currently on Zometa.

I try to eat organic as much as possible, and exercised until I developed the bone mets. I am quite involved with my teaching and last year even took two graduate courses while I was on Navelbine. It is not easy to do all of this, but it gives me satisfaction to think that I may be making a difference with my third graders. I have missed very little work, only 10 days so far this year with my surgery. I have my treatments after school, and am able to schedule most of my doctor appointments after school.

When I first started Navelbine, there were days when it was difficult for me to go to work. I am usually there by 7:00 in the morning, and often don't leave before 5:00. I also have work to do at night and on the weekends. I work for an excellent school system, and enjoy my job too much to give it up. It gives me an additional purpose in life. My principal and staff continue to be very supportive.

Everyone has to decide what they can and can't do with this disease, and need to be respected for their decisions. My goal at this point is to try to begin exercising again.

Best wishes,
Barbara H.

[Roz]

Hi Marie. I too, am a stage 1V IBC survivor. I am 60 in 6 weeks (I can tell you, an achievment in itself, amd boy will I throw a great party!) and diagnosed in June 2003. Had ACx 4, 6 weeks rads (once a week with booster to help knock out the skin involvement) then Taxol x4. Then fingers crossed until I had a recurrence,diagnosed by my surgeon when what looked like a subcataneous cyst showed up on the scar line on the chest wall. Had a CT scan and showed mediastinal node involvement and axillary node involvement as well as a mod. pleural effusion. Began Herceptin Jan 2005. All well until Mar 2007. Very small plueral effusion again in right upper lobe. Began Taxol and Herceptin. Now on round 3 I think., Feels like it has been working. Can feel that Herceptin chomping away at it again. I can say that the last two years of my life have probably been some of the very best. I have been able to do what i want to do, which includes working 2 days a week at a job I love, look after the two little grandchildren once or twice a week, go overseas a couple of times a year and pursue exercise (swimming) and hobbies from which I also get great joy. All those around me whom I love have taken on special meaning. Sitting looking out at the garden for an hour or so drinking a cup of tea can be sublime. For the first time, I think about what I want first, before thinking about what the "others" may want. As some one else on the site said, it is definitely an individual journey, both how we react to it and how our bodies respond to the treatment regimes. But there is certainly a lot of hope out there, that's for sure!!