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Topic: 29 stage IV IBC in treatment

Forum: Stage IV and Metastatic Breast Cancer ONLY — A place for those managing the ups & downs of a Stage IV/metastatic breast cancer diagnosis. Please respect that this forum is for Stage IV members only or those posting on behalf of a Stage IV patient. There is a separate forum for Stage IV Caregivers/Family in "Support and Community Connections".

Posted on: Dec 26, 2009 10:50AM, edited Jan 5, 2010 03:06PM by Nicolethomas

Nicolethomas wrote:

I am 1 week away from getting the results of my next ct to see how my lungs are looking, and I am just looking for some support, stories from others any ways of coping.

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Dec 26, 2009 12:02PM donnabee wrote:

Hi Nicole, waiting for your next scan is always tough. And, unfortunately its the name of the game for us stage IV sisters.

When I had the first scan that showed progression, i thought "dear Lord, this is it--the beginning of the end..." But I realised (with the help of the wonderful women here) that a  "bad" scan is just an indicator that its time to try a different treatment. As they say around here, it's not a sprint, its a marathon.  Arimedex stopped working for me after about 8 months, so my onc moved me to xeloda, which really isn't any harder for me to tolerate than the hormonals. So life goes on.

I will say, however, that while no one should be afflicted with this dreadful disease, at 29 years of age it's particularly criminal. At least I was a cranky old lady when I was first dx'd :-/

Hang in there, try not to worry, and visit us here often for the support you need. ::hugs:: - donna

From time to time even a blind squirrel finds a nut

Dx 2/9/2009, IDC, 2cm, Stage IV, Grade 1, mets, ER+/PR-, HER2+
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Dec 26, 2009 12:34PM Fitztwins wrote:

Hey there! I had 2 great scans and one not so great. What I want to say...when treatment works, there is hope. I am here 5 years later, 1.5 years with mets!

You can do this.

Glad you found us.

Enjoy Every Sandwich.

Dx 12/12/2004, IDC, Stage IV, Grade 2, mets, ER+/PR+, HER2+Surgery 01/19/2005 Mastectomy (Left); Lymph Node Removal: Axillary Lymph Node Dissection (Left); Reconstruction: TRAM flap (Left)Chemotherapy 02/01/2005 Adriamycin, Cytoxan, TaxolRadiation Therapy 05/01/2005 ExternalTargeted Therapy 06/01/2005 HerceptinHormonal Therapy 01/01/2006 FemaraHormonal Therapy 06/02/2008 AromasinTargeted Therapy 07/01/2008 HerceptinTargeted Therapy 05/05/2010 TykerbHormonal Therapy 08/02/2012 TamoxifenHormonal Therapy 06/15/2013 Arimidex
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Dec 26, 2009 12:44PM vickib wrote:

You are definately in the right place. I have been stage 4 for about 1.5 years, mets to lungs as well and I am I am happy to say that the meds (I am in a clinical trial) seem to be working. Great news with first scan after I started, mets shrunk quite a bit, stable for several months and another good scan a few weeks ago. You will find many positive stories here and tons of support. It is going to be a bumpy ride but remember, you are not alone.

Hugs to you!

Vicki B. Cincinnati, OH

Dx 3/3/2006, IDC, 4cm, Stage IV, Grade 3, 12/17 nodes, mets, ER+/PR+, HER2+
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Dec 26, 2009 01:39PM RobinWendy wrote:

Welcome to the place no one wants to be.  I have been Stage IV for 6 years and am asymptomatic.  Not an easy road to travel but it can be done.  I'm glad you found this site.  It will be immensely helpful when you need info, support or to be cranky!!  I hope your scan is good.  I'll be having one on Jan.7.

Robin 

dx Stage II primary BC in Jan. 2001;dx with DCIS on other breast in Jan. 2003; dx with mets to lungs in Jan. 2004 and in May 2007, mets spread to liver.

Dx ER+/PR+, HER2-
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Dec 26, 2009 01:45PM LC815 wrote:

Dear Nicole,

The Waiting Game is no fun.  Do you really have to wait for three weeks for your results?  You should be able to get them quicker than that, I think.  I've been getting results of scans and having scans all through this holiday season.  It's nerve wracking.  I am no old hand when it comes to being stage IV (just diagnosed in September), but these women on this site are incredible.  For instance, when Robin writes, "I have been Stage IV for 6 years and am asymptomatic," I just stare at that sentence and devour it.  There are a lot of sentences like that in this place.  

Peace to you,

Linda from Baltimore

Original Diagnosis 5/04, 2.5 cm. Stage IIB, 2/14 nodes. 9/09 local recurrance and liver mets. Have checked off the following: Arimidex, Tamoxifen, Taxol, Faslodex, Carbo. Now getting beaten up by Gemzar with a Neulasta chaser.

Dx 9/9/2009, IDC, <1cm, Stage IV, 0/0 nodes, mets, ER+/PR+, HER2-
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Dec 26, 2009 05:57PM Judiiiii wrote:

Nicole, I hate scans.  Thus, soon after the first year of treatment, I told my onc that he was allowed to scan me once per year.  I have had bone, liver, and lung mets for 8-1/2 years, so it has worked for me.  But the key was that my tumor markers have always been spot on as to what was going on internally and always reliable.  I focused on AST, ALT (although these can change if you stub your toe!), bilirubin, and creatinine.  I don't know what my onc looked at, but he accepted that I directed my care.  He made suggestions, I would research, and I would make the decision.  For example, he suggested Xeloda in combination with Navelbine.  I allowed Xeloda only, not the combo.  Xeloda worked for 4 years by itself and then Navelbine worked for a couple of more years.  So, in effect, by disallowing the combo, I gave myself extra years.  I would spend hours googling and felt I made truly informed decisions. 

That's how I've coped - by minimizing situations (e.g., scans) from which I would become super anxious.  Obviously that would not work for everyone.  But at the times that I had to get scanned, I would allow myself a time slot during the day or evening during which I would fret and worry, promising myself that I would not allow the anxiety to take over during all other hours.  Took practice, but it did work for me.  It is rare for a person to be able to eliminate all anxiety, but there are ways to help.  Try "How to Overcome Anxiety for Dummies."

Best of luck!

Judiiiii

Judi

Dx 9/23/2001, IDC, Stage IV, mets, ER+/PR+, HER2-
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Dec 26, 2009 06:42PM respin wrote:

Hi Nicole,

I'm almost a year out with lung/liver mets.  Honestly, to cope, I just find things to do - keeping my mind and hands busy - reading, cleaning, hobbies, friends - you name it.  When I'm tired, I spend some extra time with my dogs...they always seem to amuse me.  Oh and my kids too, can't forget about them!  LOL!

Hang in there. 

Keep on keepin' on

Dx 2009, IBC, 4cm, Stage IV, 2/2 nodes, mets, ER+/PR+, HER2+
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Dec 28, 2009 01:43PM nmiller wrote:

Hi Nicole,

I am 29 with lung mets as well.  I was diagnosed at 26 - stage IV from the beginning (initially with mets to the mediastinal nodes).  I agree with everyone else that waiting for scans is incredibly nerve racking.  Even after over 2 1/2 years of living with scans, the waiting never seems to get much easier.  I have found that I feel better once I know the news - good or bad (but of course I feel MUCH better when the news is good :)) - something about the unknown is just the worst.

I am glad you have found this board.  I just joined a few months ago and have found it incredibly helpful.  I know there are (luckily) not too many of us Stage IV girls in their 20's - one of the reasons I love this board is being able to connect with other women going through the same issues.  If you ever have any questions or want to talk, please feel free to PM me. 

All my best,

Neil

Dx 6/26/2007, 6cm+, Stage IV, 0/27 nodes, mets, ER-/PR-, HER2+
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Dec 28, 2009 02:21PM Reneepals wrote:

I just had my petscan this morning. I have instant access.... this time around I am waiting to hear from my Doc. I don't want to know until she figures it out. Waiting for scans is a nightmare. It saddens me that at 26 & 29 that you ladies have to fight this battle. You should be planning weddings, planning for families or striving for a great career.... Not this.

There are many treatments for us. But it still sucks. Sorry ladies for being so brass. Just pissed off about Breast cancer.

Renee

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Dec 28, 2009 02:48PM Fidelia wrote:

Hi Nicole,

I, too have had over 8 years with mets - lungs and bones. As Renee says, it so terribly unfair to be handed this dreadful challenge so early in life - my only hope is that the rate at which research is discovering more information and the time to market for new drugs is shorter now - that a cure for stage IV will become a reality! How to cope in the meantime...like Judii I have had to hold the scanning to a minimum - I worked out early in this journey that my weakest component is my nerve - so I try not to overwork it..the right treatment will hold the disease at bay for long periods - the trick is getting that right for you...scans play a part - but not the only part. Your own body has a big role to play - the vitality of youth is an amazing resource - why not check out some of the things the natural girls have to offer as a SUPPLEMENT to the conventional stuff and as hard as it is - live your life to the full - try not to give this disease more space than absolutely necessary - which means - have confidence in how you feel, work with the onc (and make sure you get one who listens as well as talks) to find the treatment that works for you. The scans and blood tests play a necessary role in monitoring - but so does your own body - when you feel well....to a great extent you ARE well...anxiety robs us of that feeling of peace - if scanning and close monitoring are going to rob you ...I think it is OK to limit the monitoring and increase the living :)

Come here for solace - there are threads for young women and threads for women who want to add to their treatments using natural supplements - and this may help keep you strong and minimise SEs....

All the best,

Fidelia

Dx 12/1/1997, DCIS, 2cm, Stage IV, 0/5 nodes, ER+/PR+, HER2-
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Dec 28, 2009 04:53PM Nicolethomas wrote:

Ladies!

I cannot tell you how good it feels to finally have people to relate to. I knew you were out there I just didn't want talk about it, I think they call that denial??? Someone asked why I have to wait 3 weeks for my cat scan, it's not scheduled until Jan 7th I get my results on the 14th if that clears it up. Thank you all for all of your words of encouragement, It is a great feeling to know I have somewhere to go when i feel like no one understands. God Bless you all and I will be back

Nicole Thomas

Dx 7/17/2009, IBC, 3cm, Stage IV, Grade 3, 2/11 nodes, mets, ER-/PR-
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Dec 28, 2009 11:55PM LuAnnH wrote:

I just have to say that those of you under 30 in this category is so WRONG!!!!  I am sorry to see you with this dx so early in your life.  Scan time is the WORST time!!!  I know because it is my turn later this month.  I usually try to schedule my tests for a Monday or a Tuesday so I don't have to spend a weekend worrying about results because that is the ablsolute worst.  Be sure to come here and post to help get thru those times.  I'm crossing my fingers for great scan results!

LuAnn --

Dx 7/2/2006, IDC, 2cm, Stage IV, mets, ER+/PR+, HER2+
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Dec 29, 2009 03:06AM soccermom2 wrote:

Nicole,

Hang in there!  I was 30 with two girls age 4 and 6. The oldest is graduating college this spring and the youngest is 19 and a sophmore at college!  Initially a stage 2, but by 33 I had bone mets, ovaries removed, oral chemo etc. But I know how you feel, being a young mom and nobdody really gets it...Wow.  I remember 15 years ago, I was in your shoes.  Although I didn't worry over scans.  I wanted to know what the heck was going on with the cancer. Can't stand not knowing if a treatment is working or not.  I go to Boston for treatment, and never waited long for results. Did you say three weeks to wait for the results?  Why so long?  I wonder if the onc is not available for an appt to discuss with you etc, so you are waiting for the onc?  If so, I would only schedule a scan when the onc is avail over the next few days to discuss.  Doesn't do you good to wait so long for results.  That would drive me nuts, and so in turn, I think I would drive them nuts with my questions over why they are making me wait, and how to make it easier for next time.  Believe me,after 15 years of these appts/scans/and crazy cancer life, I ask everything.

Best of luck with the results!

Dx 1990, IDC, 2cm, Stage IV, Grade 2, 3/9 nodes, mets, ER+/PR+, HER2-
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Dec 29, 2009 07:06AM LC815 wrote:

Fifteen years!  Soccermom2 is my hero.

Original Diagnosis 5/04, 2.5 cm. Stage IIB, 2/14 nodes. 9/09 local recurrance and liver mets. Have checked off the following: Arimidex, Tamoxifen, Taxol, Faslodex, Carbo. Now getting beaten up by Gemzar with a Neulasta chaser.

Dx 9/9/2009, IDC, <1cm, Stage IV, 0/0 nodes, mets, ER+/PR+, HER2-
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Dec 29, 2009 05:28PM, edited Dec 29, 2009 05:29PM by Nicolethomas

Hello again. So after reading all of your amazing stories here I treated myself to a "normal" day, ok well an extra special normal day since in my old life a normal day is 9 hrs of work, cooking dinner, changing diapers and....you get it. But anyway I got a pedicure and had a long lunch with 3 very close friends then came home for a 2 hr nap! Ahhh peace! I think that this was the first day I spent such a long period of time not worriying and thinking, and just living in the moment and I vow here and now to do more of THAT. It's nice to know it's possible. Since my diagnosis I thought I would never have just a plain fun regular day again, but I think I am learning some things here, so thank you everyone for letting me into your lives. Oh soccer mom, the reason I have to wait is that I still have 3 more chemo's to go and my cat scan isn't scheduled until until Jan 7th so I will get my results the following week on the day of my last chemo. My Onc is amazing, I trust her very much and beleive me I ask a lot of questions, but I'm still at the beginning stage where we have to see if treatment is working, I had my double mas first so now what were looking at is my lungs...I'll keep you posted and thank you so much for your encouraging story, God Bless!

Nicole Thomas

Dx 7/17/2009, IBC, 3cm, Stage IV, Grade 3, 2/11 nodes, mets, ER-/PR-
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Dec 29, 2009 06:16PM jan125 wrote:

I too, was 29 upon my stage 4 dx. Now I am going to be going on my 4th year at stage 4. There is plenty of hope,

Best Wishes,

Jan

Dx 5/20/2006, Stage IV, mets, ER+/PR+, HER2+
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Dec 30, 2009 01:12AM Fidelia wrote:

You youngsters are amazing! not age revealing - but let me say my baby was 4 when I was first dx'd and she has just finished college - so 18 and I have lived long enough to get to meet my grandson - next week!!!!! It is a very long and hard and sometimes lonely road - which is why coming here is such a good thing and Nicole - GOOD for you having your cancer-free day of pampering - just keep schedulng those and keep things as normal as you can and you too will one day be wondering where the time went as you watch your baby graduate :)

all the best

Fidelia

Dx 12/1/1997, DCIS, 2cm, Stage IV, 0/5 nodes, ER+/PR+, HER2-
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Dec 30, 2009 01:19PM MzJoy wrote:

I am glad to have found these posts.  Very encouraging...

I am 2 months into my dx of stage 4 IBC with bone mets.  I was online today reading about my 48% chance at living 5 years and needless to say, my gut was hurting.

I am refusing to believe I am gonna kick it so soon.  I have a 10 yr old and 14 yr old to raise up.  I just started chemo treatments and have completed 3 weeks of weekly taxol/avastin mixes of treatments.  I know I have a fight on my hands. 

I have found more information in these discussion boards about simple vitamins, etc...to help save my bones than my onc has told me about. 

Things I can do to help my survival and influence my health positively via nutrition. 

Adding flaxseed oil to low fat cottage cheese and adding fresh fruit or frozen in natural juices fruit to my diet daily is one of them... Apparently flaxseed oil is high in vitamin B17 which is highly effective as a natural chemo therapy.  I plan to make sure these supplements won't affect my chemo treatment adversely first.

Anybody think these vitamins/supplements would hurt?

"As a man thinketh in his heart, so he is." Proverbs 23:7

Dx 10/23/2009, IBC, 5cm, Stage IV, mets, ER+/PR+, HER2-
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Dec 30, 2009 03:36PM, edited Dec 30, 2009 04:18PM by Judiiiii

MzJoy, Where have you read that B17 is "highly effective as a natural chemotherapy?"  B17 is laetrile and, if you recall, caused quite an uproar many years ago.  It was concluded that it pretty much is a sham.  There is no evidence that laetrile does anything for humans. This is what I've read - on a reputable site:

"Most of the websites or magazines promoting laetrile base their claims on unsupported opinions and anecdotal evidence. There IS NOT any evidence that laetrile is an effective treatment for cancer or any other illness.

The USA's National Cancer Institute reviews the results of clinical research into the use of laetrile for cancer on its website. One animal study claimed that B17 slowed the growth of cancer in animals and helped stop tumours spreading to the lungs. But repeated studies COULD NOT show similar results, so the treatment remains unproven."  From:  www.cancerhelp.org.uk

I'm rather cynical about such things that are described as "highly effective" without seeing the studies - on humans - to back up the claims.  I'd love to see such studies if you have the citations.  Please reference them, if you would.  I'm interested.

The only vitamin that I have taken based on human study results of this past summer is Vitamin D.  And I only take the amount that several Vitamin D experts told me was appropriate.

One needs to be very, very careful when reviewing the so-called evidence.  The bottom line is that it is always recommended that you read the actual studies upon which "evidence" is based.  

Best of luck.

Judi


Diagnosis: 9/23/2001, IDC, Stage IV, mets, ER+/PR+, HER2-

Judi

Dx 9/23/2001, IDC, Stage IV, mets, ER+/PR+, HER2-
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Dec 30, 2009 03:42PM Reneepals wrote:

Mzjoy...I see that you are ER & Pr+.... Stay away from Flaxseed please! It mimic's estrogen. My Onc said no. (but it can change, but better to be safe than sorry) My own rule stay away from Soy & flax and oh yeah biotin.

Renee

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Dec 30, 2009 04:40PM dawn16 wrote:

I was surfing today on the internet and I found the following site and prognosis.  To me it sounds like pretty promising stats or am I misreading them.

Dawn

http://www.wrongdiagnosis.com/m/metastatic_breast_cancer/basics.htm

Prognosis of Metastatic breast cancer: Survival in breast cancer depends on multiple social, biologic, and independent patient factors. Tumour size clearly is associated with higher mortality. Lesions greater than 5.0 cm were associated with a 50-60% 20-year survival rate compared to those less than 1 cm, which had a 93-98% 20-year survival rate. 

Dawn

Dx 12/10/2006, IDC, 5cm, Stage IV, Grade 3, 8/18 nodes, mets, ER+/PR+, HER2+
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Dec 30, 2009 05:50PM, edited Dec 30, 2009 06:31PM by Judiiiii

Dawn, I do not believe those stats, not at all.  They are so contrary to every stat published on reputable sites.  It is a wonky site - too many ads - to be believable and, again, just so inflated. 

I found the same statement on Medscape - a reputable site.  However, the wrongdiagnosis.com site, as you reference in your post, made a big mistake!  They included the word "metastatic" and that is wrong.  The word "metastatic" should be deleted from the wrongdiagnosis.com site.  They obviously meant them as stats for women with NO METASTASES.   The survival rates for metastatic vs. not metastatic are vastly different and wrongdiagnosis.com put in the wrong survival rates. 

The 20-year survival rate for metastatic breast cancer is something like only 5% - regardless of the size.

I have written to the web site and asked them to correct their statement.  One needs to be very very very careful about believing whatever you read on the Internet.

Judi
Diagnosis: 9/23/2001, IDC, Stage IV, mets, ER+/PR+, HER2-

Judi

Dx 9/23/2001, IDC, Stage IV, mets, ER+/PR+, HER2-
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Dec 30, 2009 06:31PM dawn16 wrote:

Thank you Judi,

I thought it was a bit too out there to be believable.  Hence coming here to find some back up.  Thank you.  You're right.  They are very misleading and should be more careful when dealing with such a sensitive issue.

Dawn

Dawn

Dx 12/10/2006, IDC, 5cm, Stage IV, Grade 3, 8/18 nodes, mets, ER+/PR+, HER2+
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Dec 30, 2009 06:35PM Judiiiii wrote:

Dawn, I am so upset by what they wrote that my heart is pounding.  They need to be careful.  As a big big big oh so general rule:  be careful of what you read and believe particularly if the site is NOT     .org     .gov     or      .edu         

.com sites are generally for profit (big generalization) and they just put out there without carefully researching.

Thanks for helping me pass the hours!  Heeeee.

Judi

Judi

Dx 9/23/2001, IDC, Stage IV, mets, ER+/PR+, HER2-
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Dec 30, 2009 07:21PM vickib wrote:

I was told to stay away from flaxseed and soy as well due to my ER+ status, they told me to take vitamin D. Check with your doctor. Ugh... You ladies are WAY too young to be dealing with this!!

I hope they change that article ASAP. I can not believe they did not catch that! Thanks for contacting them Judi. 

Vicki B. Cincinnati, OH

Dx 3/3/2006, IDC, 4cm, Stage IV, Grade 3, 12/17 nodes, mets, ER+/PR+, HER2+
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Dec 31, 2009 04:58AM dawn16 wrote:

Thanks Judi,

 Im getting such and education here.  Glad I have you guys to check with .

Dawn

Dawn

Dx 12/10/2006, IDC, 5cm, Stage IV, Grade 3, 8/18 nodes, mets, ER+/PR+, HER2+
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Dec 31, 2009 10:26AM, edited Jan 1, 2010 11:27AM by Judiiiii

Dawn, I have not yet heard from wrongdiagnosis.com (it should be called wronginformation.com!), but I am not surprised, given the holiday.  If I don't hear from them next week sometime, I shall write again.

I posted this a few days ago, but www.advancedbc.org is a great and reputable site and includes a listing of nearly all treatments available for breast cancer under "Treatments."  Other great info, including excerpts from a guide about living with metastatic breast cancer.

Hoping and praying for a joyful and peaceful New Year for all of us!

Take care.     Judi

Judi

Dx 9/23/2001, IDC, Stage IV, mets, ER+/PR+, HER2-
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Dec 31, 2009 06:23PM Nicolethomas wrote:

Judiiiii I get nmy treatments in ann arbor is that where you go, you have been so supportive, I wonder if if our schedules ever colide, or do you go somewhere else. I am there on Thursdays, I'm just curious:) just for the nevt two weeks then it's monthly for clinical trial, scans and so on I'm doing my chemo closer to home. Just being curious Happy New Year!

Nicole Thomas

Dx 7/17/2009, IBC, 3cm, Stage IV, Grade 3, 2/11 nodes, mets, ER-/PR-
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Dec 31, 2009 06:30PM Nicolethomas wrote:

Dawn16 besides this site the internet is a terrifying place! Good nutrition is always important of course but be careful with supplements and also doing ANYTHING too radical to quickly. Talk to your onc when you have questions and women like Judi who really seem to know the right resourses. I have been given everything from mushroom capsuls to pureed asparegus by the pounds and had cod liver oil dipped wash clothes help over my  liver for hours at a time! I tolorated this from my mother because it made her feel  in control but I had to put a stop to it everntually, there is a lot of advice out there but you are ultimatly in control. Good luck and stay away from google! Best wishes God bless

Nicole Thomas

Dx 7/17/2009, IBC, 3cm, Stage IV, Grade 3, 2/11 nodes, mets, ER-/PR-
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Dec 31, 2009 06:35PM Nicolethomas wrote:

Jan and fidelia...Thank you agod Bless and Happy New year, we ALL deserve it!

Nicole Thomas

Dx 7/17/2009, IBC, 3cm, Stage IV, Grade 3, 2/11 nodes, mets, ER-/PR-

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