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Stage IV Breast Cancer Survivors?

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Posted 10/30/2007 2:36 AM (GMT 0)
Anyone out there with a similar diagnosis?  I was diagnosed in April with b/c stage IV, HER-2+ with mets to my liver, lungs, and bones. I have received 10 treatments of Taxotere, Herceptin and Zometa.  The Taxotere was very harsh and the dosage was decreased to 60%,  I was hospitalized twice with MRSA and low white blood cells before being given Neulasta injections.  In addition to this, I have had the shingles.  My last round of tests showed the tumors in my liver are aggressively growing again.  The doc changed my meds and left me on Zometa, Herceptin and an experimental drug called RAD001.  Most of my pain is in my liver.   
Posted 10/30/2007 3:26 PM (GMT 0)
We do have several Stage IV members. They don't post real often but I think they do read and I hope one will check in today for you at least. Was April your first diagnosis? My daughter was diagnosed eight years ago and has a recurrence. She is doing well on treatment of Aredia and a bone strengthening infusion once a month. She recently had a CT scan and we are waiting to hear results on it. The bone scan looked better according to the tech. She does not see the onc until Nov. 13th.

Some of us have been together for several years. I joined in Feb 99 when my daughter was diagnosed. I had had a mastectomy two years prior to that time. We have helped each other and many more over these years Three of our stage fours here now were newbies when I was.

Shingles has hit all of us. Not pleasant, are they? It sounds like you have been through the mill since April. How old are you? What area of the country are you in? I am in TX and just turned 69. I'm the oldie of the group. Most are in the 30-50 age group.

Feel free to come and discuss any problems. I hope you will get answers quickly.

Hugs Mary K.
Posted 11/11/2007 3:04 PM (GMT 0)
BC Lifer reporting in . .I have been a member here for a long time . . I am known by most as the "bandlady"  I have been stage 4 since 1999 - originally diagnosed in 1997. I have taken pretty much every chemo there is and still take Xeloda & Tykerb orally every day. I will be in treatment for as long as the Lord lets me be here.  While so far I have somehow dodged organ involvement, I have no developed IBC on my arm??? and right breast -- you've got to admit it's always a challenge.  I live in Alabama and if you are in Tennessee, I see a meeting in our future.  Hang in there . .just do cancer on chemo days and Live, Live, Live!

Hugs - Jackie

[email protected]

Posted 11/13/2007 5:49 PM (GMT 0)

Hello, I am new to the forum.  My mom was diagnosed 8 years ago with a 1 cm lump and involvement in one lymph node.  She had a mastectomy and underwent chemo.  Went into complete remission until recent recurrence.

Now has spread to lung and bones, causing a fracture in her arm.  She is refusing any additional treatment (she's 79).  This is very scary for me, not knowing what to do - she lives 700 miles away and won't come to live near me or with me.  I know without treatment it will be a downhill slide - and I have so many questions.

Anyone know a good resource for getting this type of question answered?

Posted 11/14/2007 4:50 PM (GMT 0)
Jackie, Glad to see you checking in. You are a real miracle!!! And a real survivor! Are you still working? Have you read about my grandson, the trombonist with the Fort Worth Youth Orchestra? He is the one you met when we had lunch at the Rain Forest at Grapevine.

Hillhoney, I am sorry to hear about your Mother. Even though you are far from her, does she have other family around to help her? You know even with treatment it could be a downhill slide. Sometimes quality of life is better than quantity. I am 69 and I think even ten years younger than she is, I might opt for quality, too. Do you know how bad it is in her lungs? If it is really spread her time might be short. Bone cancer is no picnic, either, we have a member here much younger than your mom who has gone through many surgeries and is on chemo for a sixth time trying to keep the cancer at bay. Maybe she will see your post and sign in.

I don't know of any place to get your questions answered except through her doctors who would know just how much cancer is involved. You can read all kinds of information, but it is general information. She has control of who can get that information unless her mind is not good. Do you have siblings near her who know more?

Hugs, Mary K.
Posted 6/17/2008 4:53 AM (GMT 0)
It looks like it's been a while since anyone has posted under this topic. My mother was diagnosed today and I am surfing through the Internet to numb the shock and sickness of this news.

I want to know how to best support her... I want a miracle to reverse time... I want to be strong and hope for the best, but expect the worst. I guess I'm just reaching out, in desperation, in sadness, in seeking strength. Any stage IV survivors out there who can spare a pep talk?
Posted 6/30/2008 5:20 AM (GMT 0)

I was diagnosed with Stage IV Breast cancer with Liver mets on January 23, 2003. I have been in remission for the past 4 years. I was given 18 months to live by an Oncologist in my state of Ohio over 5 years ago. Thank goodness I didn't accept that as fact. I flew to Longbeach, California and met with a Doctor that was conducting alternative research in Cancer, at Rationale Theraputics. His name is Dr. Robert Nagourney. Five years before my cancer diagnosis, I had suffered Cardiac Arrest and had to have emergency heart bypass surgery. I was only 40 years old. Because of my previous heart condition, chemotherapy was a risky option for me...but not as risky as not doing anything.

Because I was "Stage IV" and considered "terminal", I didn't have a mastectomy or a lumpectomy. The Doctor opted to keep the breast tumor as a way to monitor the progress of the chemotherapy. For 12 months, I received rounds of various chemos...including Eppirubicin, 5FU, Cisplatin, Carboplatin, Taxotere, Gemzare and the monoclonical Herceptin for HER2NU+. After that year, all of my scans came back showing no signs of breast cancer or liver mets. I continued to received a triple dose of Herceptin every 3 weeks for the past 4 1/2 years, up until 5 weeks ago. At that time, it was discovered that my heart has been affected by the chemo, basically the Herceptin. I am now in Congestive Heart Failure and can't receive the Herceptin to hold the cancer at bay, until and only if my heart gets stronger.

You can read about my story here...http://www.rationaltherapeutics.com/patients/testimonials.aspxLeach...I don't profess to know the answers, trust me...I don't. But I DO know some things as a survivor that others may not know. I am happy to reach out to anyone climbing the "pink mountain". It is so much easier when you're not alone.

Prayers and hugs,

Kathy

Posted 7/4/2008 1:11 AM (GMT 0)
Kathy... I admire your courage and determination. We all share the battle with you. When I found out my mother's diagnosis of stage IV breast cancer, it was a desperate time. I've since moved into a space of solace that every breath we take is precious and it is important to support and love each other through our life's journey.

Thank you for your story. Hang in there, have faith and be well.

In solidarity,

Joy
Posted 7/6/2008 10:47 PM (GMT 0)
:-)  Hi!

I am a stage 4 BC patient. I had a full right side mastectomy in Jan 2008. I found out it had spread to my bones. My doc tried Femera but switched me to Taxol/Avastan chemo with monthly Zometa. After 6 treatments, my bone cancer in stable. She wants me to have 6 more treatments since I am doing well on them. There is not allot of positive info on stage 4 BC...we need to spread the word that there is life after the diagnosis. (even though life is different). I was very active riding horses, and have been sidelined until they determine how damaged my bones are.

I feel pretty good, I work full time, still feed the horses and clean stalls. I try to eat well and get plenty of sleep. That all helps!

I wish my family doctor had found my tumor earlier, they thought it was a cycst, but were not seeing the whole thing. I am grateful to be close to Chicago and be able to go to a teaching hospital that knows what they are doing.

Good luck to us all!

 

Posted 7/7/2008 3:58 AM (GMT 0)

Here's an article from a great resouce, CURE magazine. It may not speak to your exact situation, but offers hope to those who are at Stage IV. Jackie, great to hear from you any time. Hugs, Lauri

www.curetoday.com/backissues/v2n3/features/expanding/index.html - 44k -

Posted 7/14/2008 1:37 AM (GMT 0)
Hi, I am new to the forum. My sister-in-law has just been diagnosed with invasive lobular w/ bone mets. I went with her to the onc. to hear the results from her pet scan and to find out what course of treatment is planned. I am an 18 yr bc survivor. Mine was invasive ductal w/no node involvement at age 35. I had a dbl mastectomy and 6mos chemo, due to family history of bc w/10yr return to bone and liver of my mother.
My sister-in-law is 58 and post meno. I was surprised that the onc wants to wait on her mastectomy. He is starting Femaro and Zometa. He said that he would do another bone scan in a few months and would be able check her breast for any changes.

I have posted here to see if some of the other Stage IV survivors had this type of treatment. I am just so concerned because he is not choosing to eliminate the primary immediately. I know there have been alot of advances in the last 18 yrs.. She is in Atl. w/ onc. that is supposed to be really good!

Thanks to all of you for your help!
Posted 7/14/2008 9:54 PM (GMT 0)

Curly,

My mom has stage IV bc with mets to the bones and is HER2+.  We were "thrilled" that the opinions from two oncologists concurred that mom's treatment plan didn't include chemo from the onset, rather that aromatase inhibitor therapy was quickly developing to be the best line of defense for metastasized bc in postmenopausal women.  The benefit is that the side effects are much less severe - essentially induced osteoperosis (hence, the bone strengthener treatment).  My mom's second opinion doctor at UCSF said that if the aromatase inhibitor therapy is successful, then it should keep being effective at keeping the cancer from spreading.  He also eluded to research that will be making even more strides in the next few years. 

My mother has been on Arimidex (anastrozole) daily and herceptin/bone strengthener every 3 weeks.  In the first 2 weeks of taking Arimidex, her primary lump has reduced significantly in size.  She has only had 1 herceptin/bone strengthener treatment which was quite painful for 48 hours.

My understanding of treating metastasized BC first with AIs/chemo/radiation vs. surgery is that the time it would take to recover from a lumpectomy/masectomy may be more risky than trying to shrink it all first.  Here's a link to a March 2007 article from the National Cancer Institute re: the novelty of AIs.

http://www.cancer.gov/cancertopics/treatment/breast/aromatase-inhibitors0307

I don't pretend to have the answers. I'm just a novice internet medical detective as much as the next loved one who is hungry for good news and a miracle.  MNlady13 has a good link to cure magazine below re: stage IV bc and the debate about considering it a controllable "chronic" disease.

We're in this thing together. Love and live each day strong!!

Posted 7/24/2008 12:49 AM (GMT 0)

Hi everyone - I am new at this so please bear with me.  My best friend was diagnosed with stage III bc 21 months ago.  Lumpectomy, 2 rounds of chemo, underwent masectomy of (1) breast approximately 8 months later followed by radiation. She has just learned of bone mets involving 3 areas and some involvement in the liver.  Biopsy was taken and we are now awaiting results to determine marker (ER+ vs. protein).  I am terrified, although my friend (let's call her Susan) is such an amazing woman she seems unphased.  While everyone close to her is praying for a miracle, I would just like to find out all I can about other women with similiar experiences which I hope will inspire and uplift.   Just don't know what to expect.

I also noticed a post here that mentioned -see below- but I was unable to find the link that she was referring to.   If anyone could point in the right direction, sure would appreciate.

God Bless

joytiare said...
"MNlady13 has a good link to cure magazine below re: stage IV bc and the debate about considering it a controllable "chronic" disease." 

Posted 7/24/2008 1:08 PM (GMT 0)
The website that MNlady referred to had an extra -44K- on it. I removed it as I copied and pasted and it worked fine. Here is the correct address.

www.curetoday.com/backissues/v2n3/features/expanding/index.html

My daughter has Stage IV also, and like Moonray she still works, takes care of her animals, has two kids and a husband........... Yesterday she fixed fences, stretched barbed wire before going to have her weekly chemo treatment. I told her probably no one else has ever fixed fence and then gone for chemo. She is not looking forward to losing her hair for a second time. I told her we had women here who have lost it six times, not that it makes it any better for her, but at least they have been living long enough to lose it that many times.

My prayers for all of you! MK
Posted 7/24/2008 3:25 PM (GMT 0)
Thanks for fixing the error, MK. I did not realize there was a problem. Hope those Stage IV gals find the article helpful. Hugs, Lauri
Posted 8/8/2008 1:55 AM (GMT 0)
I've had stage 4 breast cancer for almost 3 years, and have been on chemotherapy the entire time.  Initially metastasis to liver, lymph and bone, but has just been seen in the liver for the past 2 years.  I've done well overall, despite a few problems with various drugs.  In April 2008 had lots of new tumor growth in my liver and switched drugs.  No new growth since, but no improvement either. 

It's great to here of people living many years with stage 4.  I'm looking for any suggestions on what else to try to shrink tumors, and live long.

Drugs I've been on:  Taxanes, Avastin, pamidronate, Gemzar, Xeloda, Herceptin, Doxil, Vinorelbine, Etoposide, Ixabepilone and Carboplatin.  I may have missed 1 or 2.  I do acupuncture and Chinese herbs.  I'm 52 and have a 14-year-old son.  I continue to work, but my athleticism has suffered.

Would love to hear any suggestions, wacky or not, for treatments for methods of boosting survival.

Thanks!

Posted 9/10/2008 3:34 PM (GMT 0)
I found these boards looking for fellow Stage IV surviors and was thrilled to read some of your stories. Ive been dealing with this for five years, but its not the "Cancer-free anniversary" that some get to have. Its nice to know that there are other people out there who have taken all the same drugs I have....Kathy! Ive seen the business end of all those needles - NO FUN! Im glad there are others out there who have taken their "new normal" and still seem to stay positive and believe, like I do, that the possibilites are endless....
Posted 9/13/2008 5:23 PM (GMT 0)

Hi, I am a new member.  Was just diagnosed with breast cancer, right breast tumor, already gone to my liver and spine.  I see the oncologist for treatment options this Wednesday (9/17/08).  They will do a biopsy of the breast on Monday.  Already had a biopsy of the liver which told them it was breast.  Had a clean mammogram in March 08.  I am so angry.  I am only 50 with three teenage kids and a wonderful husband.  I just cannot believe it is so far along and I have never had a bad mammogram.  So, I will find out if HER positive or negative and then they will decide treatment options.  Already said no mastectomy.  I have been crying ever since until a friend forwarded this site to me.  Thank you for all the posts that I ready this a.m.  You gave me the hope that was missing in the message from the doctor.  I am open to alternative options too.  Interested in the acupunture avenue to supplement traditional medicine.  Anyone out there have success with combining?  Also, any opinions as to diet, foods to avoid (my cancer is progesterone/estrogen receptor).  Thanks. 

Posted 9/15/2008 11:36 AM (GMT 0)
Hi cookie! I , too, am surprised you were not diagnosed with a mammogram before this. I think I would be asking for answers and copies of old mammogram reports!!!! Dense breast tissue makes it difficult to read mammograms but surely there was something there. How do they know where to biopsy your breast now? My daughter was diagnosed Stage IV last year, but she had a mastectomy and chemo eight years before. She will be 50 next summer and she also has two teenagers. The first chemo she was on did not do much good, but they recently started her on a new one that seems to be doing the job. So sometimes it takes a little while to figure out the best treatment, too. She has breast cancer in her bone marrow and bones. Keep us informed as to what the onc says. Hugs MK
Posted 10/2/2008 4:59 PM (GMT 0)

My wife just found out she has mets to the lungs and liver, Estrogen positive, and has started taking aromasin. I'd be interested in knowing, for her benefit, are there others out there in a similar situation? I'd like to tell her some women have been getting along OK for years with the same kind of mets. We've seen some reports like that already, but would like to see even more!

Eric in Columbus

Posted 10/5/2008 11:44 PM (GMT 0)
Hi! Since my last posting, I had the breast biopsy (1.4 centimeter tumor) and it came back HER2 negative, which they say is a good thing.  I started on FEMERA on the 18th of September.  So far the only side effect is constant hot flashes, to cold flashes to normal...over and over again, all day and all night.  I go back on the 15th of October for another cat scan.  I am going to go to another doctor at a different facility for second opinion.  Also, I will have first accupunture next week.  I am glad that there are other people out there....any advice on the FEMERA hot flashes?  And anybody else out there that has had success with accupunture? thanks.

Posted 5/27/2009 12:24 PM (GMT 0)
My mother just found out she has mets to the liver, Estrogen positive, and afraid of chemotherapy. I'd be interested in knowing, if there are others out there in a similar situation who have tried Hormone therapy (arimidex) and the results ?
Posted 5/28/2009 12:07 AM (GMT 0)
There are so many variables! How old is your mom? Are the doctors recommending chemotherapy? Hormone blockers are very effective with ER+ cancers, but most of the women I've known with mets, chemo was recommended in addition to the hormone therapy. What is your mom's history with breast cancer? Is she newly diagnosed, or is this a recurrence? Has she had chemo before? Or has she been on hormone blockers before? All these things affect what the doctors will recommend. Good luck to your mom. And a big hug to you!

BEV
Posted 5/28/2009 4:19 AM (GMT 0)
Hi,

My mom is 61 years old. She has been diagnosed for the first time with cancer. She has not had any chemo / radiation/ hormone therapy earlier.
Posted 5/28/2009 12:01 PM (GMT 0)
Your Mom is relatively young and I personally think chemo is the best way to go. The oncologists know their business so listen to them. Some people do have a rough time with chemo, but not everyone. My daughter has been through chemo twice and she does not have any problem with it at all. The doctors will work with her to find the right combination. My husband has just been diagnosed with lung cancer and mets to the bones. He has had one mega dose of radiation and will begin chemo probably next week. I guess I was lucky, I had a mastectomy 12 1/2 years ago and all has been well in the cancer area for me. Hugs MK
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