Looking for Stage IV Survivors

[callen03]

I am desperately looking for Stage IV Survivors, because I need some support. I was just recently diagnosed, and I am already Stage IV. The statistics are scary.

If you are Stage IV, how long have you been a survivor? Also, what keeps you going? For me, it is knowing that progress is being made in this area. I strongly believe that there will be a cure in about 5 years. I don't want to be on chemo for the rest of my life, but I have family that needs me. Also, how do you stay positive?

[Mgarr]

The following thread may be just what you ordered. Mary

http://her2support.org/vbulletin/sho...survivor+stage

[doh2pa]

Hi There,

I was originally diagnosed in Feb 2004 with stage II. I had a mastectomy and chemo and thought all was well till Sep 05 when my cancer advanced to my liver. I am now stage IV. Just finished 6 months of chemo and I am in remission. So, how do I stay positive? Well, first I try not to listen to any statistics that say we have 2 or 3 years. No one knows that and everyone is different. There are many amazing women on this site who have beaten all the odds, so why not us! I stay positive by staying involved in my treatments. I was so happy to finish 6 months of chemo and just get my herceptin every 3 weeks and faslodex monthly. But I have two teenage boys and want to stay alive as long as I can for them. So I did lots of research and found a vaccine trial for stage IV women who have failed at least one treatment regimen (this would not be for you). And I got my first vaccine last week. It may not help but I feel like I am doing something actively rather than passively waiting for "it" to come back. So do your research, strive to look for alternate therapies (chemo sucks and we don't want to be on it unless there is nothing else!) and keep on fighting. It's too soon for me to be a survivor so I call myself a WARRIOR! Want to join me?

Donna

[callen03]

Donna, you have such a great outlook. Thanks for the advice. I had a hard time accepting my diagnosis. I've always been so healthy. Being told I am Stage IV was a shocker.

I agree that we need to ignore the statistics, as they are based on older treatments. I will be on chemo for a total of 6 months (2 more rounds to go). I will continue Herceptin, but my doctor hasn't determined how long yet. He is going to check on some of the studies being done regarding short-time use vs. long-term.

I know what you mean about being called a "survivor." The Susan G. Komen Race for the Cure was very emotional for me, especially the survivor's ceremony. I don't feel that I've earned that title either. I like the idea of being called a warrior. You bet I will join you in our fight!!!

Mary, the link was exactly what I needed to hear.

This forum is an answer to my prayers. Although I am going through some really bad health issues, God shows himself to me every day. I am very blessed.

Carla

Greetings!

32 year old/ STAGE IV Liver Met diagnosis 6 months ago. Making progress on all fronts with Taxol & Herceptin. Each day is a struggle. Will I ever be able to have kids? Will I get to see them grow up? Etc...but I refuse to let others tell me no. Live each and everyday with your reality - which is that you, too will survive this.

Love & Peace,

Krista

[Marily]

Krista, Keep thinking positive I am a stage IV, 6 year survivor.. NED (no evedince of Desease). My motto is to Live, Love and Laugh and Always Allow Miracles. Keep up with the best information out there (and this site is the BEST I have found) and Be your OWN BEST ADVOCATE!

Hugs and Keep up BEING POSITIVE!
Marily

[Lolly]

Hi Carla; if you're looking for inspiration you found the right place! Quite a few of us are surviving long past our "due date"; I'm into my sixth year as a Stage IV survivor, doing quite well, thank you Don't even look at statistics, just keep on truckin' and don't look back!

<3 Lolly

[Adriana Mangus]

I've been thinking really hard but cannot remember your name, please respond
to this thread...Adriana

[chrislmelb]

It may be lovingdaughter who is the student. Good luck.
Chrsitine

[janetcaruso]

Hi Carla, Like you, I was Stage IV at diagnosis - 18/18 nodes involved with mets to liver and bones. I had 5 months of Taxotere + Herceptin and now Tamoxifen + Herceptin. I have just passed the 1 year mark since starting treatment & will be on Herceptin for life. (My onc just said that having metastatic disease qualifies me for lifelong treatment with Herceptin, but if I get tired of coming in every 3 weeks for the infusion we could talk about taking a break for a while...I think it's doing what it's supposed to so would rather continue, but may have to go off it anyway as my last MUGA & following echocardiogram showed an abnormality in the heart wall so am soon to see a cardiologist for further assessment.) What keeps me going? Well, my 3 children aged 16, 14 & 12 for sure. I still have to get them to dance classes, guitar lessons and soccer games (which I love to watch) and I try to stay very involved in their lives. (Too much so my 16-yr-old son would say! But teenagers do seem to require more work than toddlers did!!!) Like you, I feel my children need me & with 3 kids there is always so much that needs to be done!! I have to keep going!! I also have an incredibly supportive group of friends & co-workers. I found I really thrive on the energy of those around me. Last summer especially I was constantly surrounding myself with (or being surrounded by) those who had a positive energy. My cousin & her daughter came & stayed with me from New Zealand for a bit, my brother & his son were here visiting for a while too, my neighbours arranged a fantastic 50th birthday party for me. And although certainly tired at times, for the most part I was feeling well enough to do a fair bit. I really didn't even mind losing my hair - being such a hot summer it was much cooler that way!! (Made it easier though that I don't have to work through the summer.) And I was learning about & trying some alternate therapies (chinese medicines, garlic concoctions, essiac, milk thisle etc) which did give me a sense of empowerment. So, keep your spirits up, stay positive, new inroads are being made all the time -- we can beat this thing!!
Janet

[fcrcm]

Hey Callen03

Like you, I have been looking for Stage IV survivors. I am a 15 year survivor. I was diagnosed at age 49 w 2 cm tumor, 9 out of 16 nodes +, ER+ AND metastases in my bones (vertebrae) We didn't even know about Her2Nu in 1991 but I know now that I am Her2Nu++. I have 3 children - high school students in 1991.

I had a full mastectomy and lymphectomy (to check for + nodes), 4 treatments of CAF, 42 rads. to breast and axilla, and started on tamoxifan. A year later the mets on my vertebrae began to grow so I had 20 more rads (to vertebrae) and then underwent a bone marrow transplant (which they don't do for Breast CA anymore because the results weren't worth the horrible treatment.)

I was NED from Feb 1993 until November 2005. Now I have extensive bone mets and lymph involvement and liver mets. Have been on Herceptin for 8 months and am living a good life.

My children have all married, they support themselves, and I have 3 grandchildren. I am now 64.

Treatment is so much more sophisticated than it was 15 years ago, and not nearly so awful. And there are new immuno therapies all the time. The first 12 years of my "remission" were quite OK. In the last 2, before they finally found the liver mets, I was feeling quite bad. My onc kept telling me to take a multi-vitamin and get more exercize. I was an exercize freak - so it was kind of a relief when they finally admitted I was sick again and began to give me treatment.

Of course I am interested to know if anyone out there has a story like mine. Anyone?

[Marilyn]

Hi--I was originally diagnosed in Feb of 2000. Had a recurrence in July 2001 and thought it was curtains. I got more chemo and Herceptin and continue Herceptin today and I'm doing great. I have done all sorts of things to stay positive. One is to turn the stereo on high and sing along with Reba to "I'm a Survivor"! :-) I also try to laugh and live life as normally as possible. I consider my chemo nurses my friends since I see them every three weeks. I feel so very fortunate that Herceptin came along at the right time for me!!! Hang in there!

[Andrea Barnett Budin]

To all you fabulous ladies who are facing this daunting challenge, I stand with you! Herceptin saved my life. I have been on it since '98 (ev wk) - '01, ev 3 wks (triple the dosage since '01). No Evidence of Disease. STABLE. Music to my ears. Low on energy but full of positivity. Tmrrw I will be 62 and just greeted my 5th grandchild. Your kids need you forever, so I try to reach deep down for strength and courage, to be a good role model for them facing any adversity. We are so very much stronger than we ever imagined, when push comes to shove. I do have perky days that just happen. But I cherish each day as the gift that it is. 4th stage (w/9cm tumor), mastectomy, 2 out of 18 nodes, from the getgo. YOU ARE NOT A STATISTIC. Some have prevailed w/such odds. If they can do it, so can YOU! I program my thoughts, knowing my body takes orders from them. WHAT YOU THINK ALL DAY BECOMES YOUR FATE. So when the fears and what ifs creep in, I acknowledge them and try to move right through them as fast as I can. NO! I tell myself -- you are healthy. You are loved. You have much to live for. I see myself far into the future. I live each day full of LOVE, remaining open to receiving it from every nook and cranny. The Universe is an infinite energy field full of loving energy. Tap into it. Connect with it. Open your heart. I agree with everything you lovely ladies have written wholeheartedly, so won't repeat your sentiments on this site. I WILL repeat them to my spirit, as I consciously make the effort to do with each day! I believe with all my heart that I WILL SURVIVE. Every thought is like a prayer. And every prayer is a potential miracle. YOU are a potential miracle. MAKE IT HAPPEN.

With much love,
ANDI

[lu ann]

Dear Callen,

I was terrified when I was diagnosed with the recurrance Feb, 2004. I thought for sure that I would be dead in 6 months. But through my faith in God, the support of friends and family, this support group, and the right meds, I have lived 2 years past my own prognosis. It wasn't easy, but it is doable.

We all are given today to live and we are alone responsible for how we live it. I have accepted the fact that I will die someday, but it might not be from cancer. I really don't dwell on it. When I was first diagnosed it was all I thought about.

I have been on some kind of treatment for all but 14 months of the past 31 months, my hair fell out, I was sick and nauceous at times, and my body ached. But, I still can say that I have a pretty decent quality of life.

Do everything that you possibly can to educate yourself about this disease so you can be pro-active.

I have taken breaks from this site when I needed to. Sometimes it gets to hard to hear others heartache, but I soon return.

Take care and don't be afraid to lean on us for support. We may not know all the answers right away, but there are those among us that have the time and knowhow to do the research, and I'm very greatfull for them. We are here for you.

Love and God Bless You, from Lu Ann.

[gin-tx]

Dear Carla,

I was diagnosed Stage IV in June 2006 which I know isn't very long. I had BC 10 yrs ago, had lumpectomy followed by 36 radiation treatments. Then in February of this yr discovered a problem with other breast, my gyn sent me to a breast surgeon. He recommended a biopsy which he did the next week, he thought everything looked okay, told my family he thought everything was fine. I had a nagging feeling something was not right. On Mon he called and told me I had a 'little cancer'. I went thru sentinel node mapping and wider margins removed, first lymph gland was malignant but others were clean as were margins. Proceed to interview oncologists as I knew I would have chemo, was sent for bone scan, something showed up they could not identify. Sent for MRI, it was a tumor on my spine, pressing against lungs, changed everything to Stage IV metastatic cancer. I was devisdated and felt was there any hope for me. I went thru 18 radiation treatments on tumor on spine, am going thru chemo now (herceptin and aridia), am working 6 hrs per day and managing to function. I take one day at a time. You can't plan your whole life in a week, take it one day at a time. I wish you the best and please keep in touch. I had to interview three oncologists before I made a decision and absolutely love the guy I'm using, he is so kind, caring, entire staff is wonderful. I feel I made a good choice. Keep me informed of your progress and how you are doing. I live in a large city so I have lots of choices. I hope you also have a wide selection of people to contact and ask many questions, don't let any of these docs intimidate you, speak up!

ginkott1@aol.com

[dede10]

I was dx's stage 4 her2+++ in March 2003, and I'm still here! I do things I love to do, and try very hard to spend as much time as possible with those I love. I don't see it so much as a death sentence, but as a wake up call to stop & smell the roses. I have always done everything, run here, & there, and worked 2 jobs, & now I relax & take care of my husband & nephew!

[Patty H]

I was dx in 2000 but have been stage 4 for around 3 years. My Dr. works on quality of life and I usaully have it. Yes I am on treatment a lot but I also get breaks now and then. I have to have my pity party now and then but then I get back up and refuse to give in to this. After the first treatments which were kind of harsh, the rest have been much easier to tolerate. They have so many drugs to help you get through this now days. To see me and be around me, most days you would never know there was a thing wrong with me. These first few months will be the worse mentally but you will grow and learn to laugh again. Patty H

[tricia keegan]

Amazed and overwhelmed by the courage and strength you all display reading these replies.I am not stage iv,was dx July 05 as stage 2 triple pos with 3 lymph nodes affected and am due to finish my year of herceptin in Nov.Now I am coming to the end of a tough 18months in treatment I worry about a recurrance and find it difficult to resume any kind of a normal life.it's wonderful to read all your stories here and gives me hope so thank you and continued good health and ned to you all

Tricia

[jhandley]

Hi
I was dx in April 2001 Stage 2a (2 cm, 1 node+).....then had a recurrence in same breast (which I am sure was there all along just not "seen") 1 year ago. A 15mm spot on the liver was also found second time, which disappeared after 3 tx of herceptin and taxol. I have been on just herceptin for 8 months and so far so good. I have another liver scan in 3 weeks.

I now take 200 mg Q10 and 20 ml flaxseed oil and 5 g fish oil and also a flaxseed muffin containing 26 g flaxseed meal daily. I also take olive leaf extract, Mg and reishi mushroom extract (Immune Support Astra Forte).

Kind regards
Jackie

[pattyz]

Carla,

You begin by doing just what you've done here: ask for experience and support. That is the way I coped in the beginning, too. You've already recieved such wonderfully supportive posts!

I was first dx'd Stage IIIb in Jan. 2000 with Invasive and Inflammatory. My mets were dx'd 2 1/2 yrs later. First in mediastinal nodes/spot on lung and pelvis. Two months later was dx'd with brain mets. Four yrs ago plus a week now.

I have planned for the worst, making preps for cremation, music for service etc. Wrote letters, made up cards, will, medical stuff.... whatever I can think of.

Living in the day as much as I can, most days, I "hope for the best". I do find it painful, emotionally, to try and make any 'long range' plans or goals. I have been extremely lucky to have responded well to all my treatments... having my brain mets recurr two times after initial dx but not in body. Yet, never knowing that this would be the case...exceeding all the 'statistics'.

In these past four yrs, I've had other medical issues, like cervical cancer/total hysterectomy, cataracts from decadron/cataract surgery. Life goes on, until it's time for it NOT TO.

I've also gleaned great inspiration from the http://www.bcmets.org/ site which is filled with courageous people with bc mets, along with a few care givers or loved ones. All kinds of info on treatments for different mets, side effects, coping and dealing with it all.

By reaching out, you have already begun to cope yourself.

Very best wishes to you,
pattyz