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All TopicsForum: Stage IV and Metastatic Breast Cancer ONLY → Topic: If you are not Stage IV but have questions, you may post here

Topic: If you are not Stage IV but have questions, you may post here

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. There is a separate forum For Family and Caregivers of People with a STAGE IV Diagnosis.

Posted on: Mar 3, 2012 08:22PM

chrissyb wrote:

This thread is for those people who are not stage IV but are having concerns or questions regarding stage IV.

I found my peace which gave me strength. 52 at dx. Dx 12/8/2003, IDC, 4cm, Stage IV, Grade 2, 0/12 nodes, mets, ER+/PR+, HER2-
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Mar 3, 2012 08:36PM gentianviolet wrote:

This question comes from my heart.  I have a dear friend that recently became stage IV.  I am stage II and although I have breast cancer and can relate on one level, I desperately do not want to hurt her with anything I say or questions I ask.  However I would probably like to know more what NOT to say or ask.  Any help with this  would be greatly appreciated.  I have read many stage IV threads and am truly inspired by your honesty and strength.  Good thoughts to all of you.

Barbara Dx 8/13/2009, IDC: Cribriform, Right, 2cm, Stage IIA, Grade 1, 1/14 nodes, ER+/PR+, HER2- (FISH) Surgery 9/1/2009 Lumpectomy: Right; Lymph node removal: Right, Sentinel, Underarm/Axillary Radiation Therapy 10/15/2009 Whole-breast: Breast Hormonal Therapy 1/1/2010 Arimidex (anastrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Mar 3, 2012 08:41PM Jodycat wrote:

Nice post! No questions here, but some admiration.

Dx 5/6/2011, IDC, 6cm+, Stage I, Grade 2, 0/2 nodes, ER+/PR+, HER2-
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Mar 3, 2012 09:31PM chrissyb wrote:

Hi Gentianviolet sorry to hear that your friend has joined the stage IV club and (((((hugs))))) to you for wanting not to do the wrong thing. 

For me personally and I can only speak for myself, when I was dx stage IV I wanted people to understand that I was still the same me.  I wanted people to treat me no different than they had the day before.  I welcomed questions regarding what the treatment would be and the love and support that was offered by a multitude of people.  I needed to know that I could cry on their shoulder whenever I needed to cry but most of all I just needed to know they were their should I ask for their help. 

Just because a stage IV dx is given it doesn't change the person within so, she is your friend just keep being her friend and assure her that you will be there for her for whatever she needs.

Hope this helps a little.

Love n hugs.  Chrissy

I found my peace which gave me strength. 52 at dx. Dx 12/8/2003, IDC, 4cm, Stage IV, Grade 2, 0/12 nodes, mets, ER+/PR+, HER2-
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Mar 3, 2012 09:42PM CoolBreeze wrote:

I would recommend you ask her what to say or what not to say.

As you can see, we are all divided on this subject and so your friend will have her own opinion.  I had a very nice person come to me and say he felt awkward and didn't know what to say to me.  I told him.  Real friends can talk to each other. 

Ann's cancer blog: www.butdoctorihatepink.com .....multicentric/multifocal IDC/ILC+DCIS/LCIS/ADH Official dx? "Your breast was a mess." ~UniMastectomy/Chemo/Herceptin/Tamoxifen/Recon Almost Done! Oh wait. mets to liver 5/21/11 Now Stage IV Dx 8/17/2009, IDC, 4cm, Stage IIA, Grade 3, 0/3 nodes, ER+/PR-, HER2+
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Mar 3, 2012 09:44PM bobkat wrote:

Chrissy, that is exactly it. Gentianviolet you sound like a very special friend.  The most I ever wanted from my dear friends when first diagnosed with stage IV was for them to continue to be my friend, and treat me the same. Long sentence! Gentianviolet, the hardest for me was when certain friends became afraid and turned away.  I know who my true friends are and it's really freeing!  Blessings to you and your friend, both.  

Dx 5/9/2011, ILC, Stage IV, 3/16 nodes, mets, ER+/PR+, HER2-
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Mar 3, 2012 09:59PM - edited Mar 3, 2012 10:01PM by CoolBreeze

This is a genius solution, BTW.  

Unless people don't see it and then we have this one and all the others too.   

Ann's cancer blog: www.butdoctorihatepink.com .....multicentric/multifocal IDC/ILC+DCIS/LCIS/ADH Official dx? "Your breast was a mess." ~UniMastectomy/Chemo/Herceptin/Tamoxifen/Recon Almost Done! Oh wait. mets to liver 5/21/11 Now Stage IV Dx 8/17/2009, IDC, 4cm, Stage IIA, Grade 3, 0/3 nodes, ER+/PR-, HER2+
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Mar 3, 2012 10:56PM banjobanjo wrote:

This thread is such a good idea!

Barbara 'And we are here as on a darkling plain, swept with confused alarms of struggle and flight, where ignorant armies clash by night. Dx 10/5/2011, DCIS, 1cm, Stage IV, Grade 3, 14/16 nodes, mets, ER-/PR-, HER2-
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Mar 3, 2012 11:21PM steelrose wrote:

Hey! Perfect thread idea, chrissyb! No surprises here!!

Hi gentianviolet...

You're certainly a thoughtful friend. I would take my cues from her. I don't like to talk a lot about cancer or my diagnosis outside of this forum. I crave normalcy more than anything! I assure you that just your presence... laughing, talking, doing the things you love to do together, will be great medicine. If she wants to talk, she'll talk!

Best wishes to you...

Rose.

Dx 1/22/2010, IDC, Stage IV, mets, ER+/PR+, HER2-
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Mar 3, 2012 11:59PM sheila888 wrote:

I don't have any questions.

Just stopped by to say HI and Thanks to chrissy for the much needed thread

Sheila♥ Dx 4/8/2005, IDC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2+ Dx 8/21/2015, IDC, Left, 1cm, Stage IIB, Grade 2, 1/3 nodes, ER+/PR+, HER2- Surgery 10/13/2015 Mastectomy: Left; Prophylactic mastectomy: Right Surgery
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Mar 4, 2012 12:18AM debbie6122 wrote:

Great idea!

masectomy, chemo, node positive Dx 12/20/2009, IDC, ER+/PR-, HER2-
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Mar 4, 2012 12:58AM YramAL wrote:

I wonder if the mods could pin this one to the top of the forum?

I think this is a great idea. I don't have any questions, though.

Mary 

Mary-Oncotype Score 11 Dx 12/7/2009, IDC, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2-
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Mar 4, 2012 01:04AM chrissyb wrote:

YramAL it is pinned at the top of the stage IV forum so it can easily be seen and found.

I found my peace which gave me strength. 52 at dx. Dx 12/8/2003, IDC, 4cm, Stage IV, Grade 2, 0/12 nodes, mets, ER+/PR+, HER2-
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Mar 4, 2012 01:06AM YramAL wrote:

Duh. Should have checked first before posting........

Mary 

Mary-Oncotype Score 11 Dx 12/7/2009, IDC, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2-
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Mar 4, 2012 01:30AM - edited Mar 4, 2012 01:41AM by sandilee

 What a thoughtful post, gentianviolet!

With the people I am close to, like my best friend or one of my kids, I usually tell them when I'm having a scan or a certain test.  It's really heartwarming when I get an email from my son asking "How did your scan go on Wednesday," or "Did you get your results yet?" from my best friend.It makes me realize they are thinking about me and know that this is important, and may be life-changing in terms of treatments.

The rest of the time, like others who posted above, I prefer my friends act as they always have. I still care about their problems, and want to hear about them providing they are sharing something that is important to them, like family issues or work problems. I still wantt them to come to me if they need support in some way, like they always have.  What I am less sympathetic to is listening to complaints about minor physical ailments, petty gossip or a lot of negative energy directed at the world in general.  I find I want to spend my precious time on earth enjoying the laughter and love of my friends and family, and also being there for them when they might need me.

The only things I can think of not to say or ask is anything that might imply that she didn't take good enough care of herself, or any suggestion that eating a certain thing or taking a certain drug would have changed her outcome.  It's hard to imagine that someone who would post the kind of sensitive question that you posted would do that anyway, but for anyone reading, I'd caution that these kinds of suggestions can seem a bit critical and judgemental.  As a woman who is battling the disease herself, I doubt that I need to tell you that! ;) 

  I wish the best for your friend, and she's lucky to have you. 

- 4/2015- Mets to liver. 6/2011-Mets to spine, ribs, and skull, 6/2011 radiation, Xgeva and Faslodex 7/2011 Dx 11/2007, IDC, 1cm, Stage IA, Grade 2, 0/6 nodes, ER+/PR-, HER2- Hormonal Therapy 1/10/2008 Aromasin (exemestane) Dx 6/2011, IDC, mets Radiation Therapy 6/30/2011 Bone Hormonal Therapy 7/15/2011 Faslodex (fulvestrant) Hormonal Therapy 4/10/2015 Femara (letrozole) Targeted Therapy 4/20/2015 Ibrance (palbociclib) Chemotherapy 8/4/2015 Xeloda (capecitabine) Hormonal Therapy 3/11/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Mar 4, 2012 06:07AM - edited Mar 4, 2012 06:08AM by angelsister

chrissy, You guys rock xxxx

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Mar 4, 2012 06:14AM - edited Mar 4, 2012 06:22AM by angelsister

Gentianviolet, i'm so sorry that this is happening to your friend, its clear from your post that you are going to be a tremendous help to her. I agree with the others, knowing that you still see her as the same great friend she was before this diagnosis. My sister used to like to tell me about her appointments and results and treatments and then move on to 'normal stuff'. I hope your friendship grows as she shares her thoughts with you or you guys just eat cookies! Best wishes to both of you xx

ps cyn was a nurse and i still used to call her to get advice, she would be pleased that people still turned to her because she was soooo smart and caring xxx
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Mar 4, 2012 06:30AM Momine wrote:

Thank you for posting this thread. First of all, thanks to all the stage IV ladies for posting. I am finding it helpful as a way to prepare myself for what, most likely, is down the road for me one day.

Also, I do have a few questions, since my aunt became stage IV recently. They found mets in her liver and her abdominal lymph nodes. After 3 rounds of taxotere, the liver lesion was gone, but the lymph had not budged. So they continued with the taxotere. She is having the last chemo of this round on Monday.

She had a bad case of low white cells last week and ended up in the hospital. They are not giving her neulasta, because they say it can stimulate the tumor to grow. Is that typical, not to give neulasta for that reason in stage IV?

If the tumor still hasn't budged after the additional taxotere, does anyone know what the next step ought to be? My aunt is 74, and her original DX was a year before the mets were DXed. 

Dx 6/1/2011, ILC, 5cm, Stage IIIB, Grade 2, 7/23 nodes, ER+/PR+, HER2- Chemotherapy 6/19/2011 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Surgery 9/12/2011 Mastectomy: Left, Right Radiation Therapy 1/8/2012 Surgery 3/7/2012 Prophylactic ovary removal Hormonal Therapy 3/31/2012 Femara (letrozole)
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Mar 4, 2012 06:54AM chrissyb wrote:

Mommie can you tell us what your Aunts status is?  As a stage IV she will be on some form of treatment for the rest of her days.  If her lymph tumor has not shrunk or grown, she will probably be be clasified as stable and if she is ER/PR+ possibly put on an AI and of course monitored.  The doc may also decide to keep her on the Taxotere if she is tolerating it well and not having too many SE's.  There are many variables when it comes to stage IV and every treatment can be different for every person.

I can't answer about the Neulasta but I'm sure someone else will be along to give you some information on that.  I do know that with a lot of stage IV if the blood count is so very low and will not rise by other means a blood transfusion is given.

Hope this helps a little.

Love n hugs.  Chrissy

I found my peace which gave me strength. 52 at dx. Dx 12/8/2003, IDC, 4cm, Stage IV, Grade 2, 0/12 nodes, mets, ER+/PR+, HER2-
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Mar 4, 2012 06:59AM Momine wrote:

Thanks Chrissy. She is ER+ and was already on an AI. She is being treated in Denmark, and the approach is a little different from what I am used to at this point. Thus the questions.

Dx 6/1/2011, ILC, 5cm, Stage IIIB, Grade 2, 7/23 nodes, ER+/PR+, HER2- Chemotherapy 6/19/2011 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Surgery 9/12/2011 Mastectomy: Left, Right Radiation Therapy 1/8/2012 Surgery 3/7/2012 Prophylactic ovary removal Hormonal Therapy 3/31/2012 Femara (letrozole)
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Mar 4, 2012 07:05AM reesie wrote:

Momine, are you sure it was WBC and Neulasta? I never had a problem receiving Neulasta but when my HBG was low they gave me a transfusion even though there are HBG stimulating drugs. The HBG stimulating drugs can stimulate tumor growth but I've never heard (or read) that about Neulasta.

Marie - It's A Great Day To Be Alive. Dx 10/29/2010 ER+/PR+, HER2- Stage IV mets to bones, liver, lungs, skin, pleural effusions
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Mar 4, 2012 07:07AM chrissyb wrote:

No problem.  The standard of care world wide does follow a certain protocol but as stage IV the individual is considered first as in where the mets are and what chemo is the best for that type as well as how well it performs and the persons reaction be it good or bad to that particular drug.  I hope your Aunt does well with her treatments.

As for being on an AI, there are three and they all perform basically the same thing but are put together differently so if one fails, she can still try one of the others.

Love n hugs.  Chrissy

I found my peace which gave me strength. 52 at dx. Dx 12/8/2003, IDC, 4cm, Stage IV, Grade 2, 0/12 nodes, mets, ER+/PR+, HER2-
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Mar 4, 2012 07:08AM apple wrote:

great idea!

peace and love, apple - ..... Mary Magdalen Dx 4/10/2008, IDC, 5cm, Stage IV, Grade 3, 4/9 nodes, mets, ER+, HER2+
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Mar 4, 2012 07:08AM Momine wrote:

I never heard that about neulasta either, that is why I ask. I am sure, because I specifically asked my mother to ask the doc. I thought it was odd, given my aunt's age and the amount of chemo she has already had, that they would not give neulasta. All her numbers were low, and they also gave her extra blood, but her WBC being low is what sent her to the hospital.

Dx 6/1/2011, ILC, 5cm, Stage IIIB, Grade 2, 7/23 nodes, ER+/PR+, HER2- Chemotherapy 6/19/2011 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Surgery 9/12/2011 Mastectomy: Left, Right Radiation Therapy 1/8/2012 Surgery 3/7/2012 Prophylactic ovary removal Hormonal Therapy 3/31/2012 Femara (letrozole)
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Mar 4, 2012 07:12AM suzieq60 wrote:

Apple - you are one lovely lady :)

2nd diagnosis October 2010 - IDC 5.8mm node negative - missed on mammogram in October 2009 Dx 10/13/2009, ILC, 1cm, Stage I, Grade 3, 0/5 nodes, ER+/PR+, HER2+
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Mar 4, 2012 07:13AM apple wrote:

and you are wonderful to care gentianviolet.  Personally, i really really hate it when people ask about my disease.  I  just hate the sympathy and empathy and  gentle hugs.  That is just me tho.  I do like it when people pick up on the fact that i like to talk about THEM, and other things.   An offer to 'help' is always welcome, but i personally would never ask anyone for help unless I knew them very very well... I do enjoy coffee with my friend.. All other offers, i consider kind of nosy..  I had to yell at my piano student and tell her not to be a gossip queen (she is an older lady who I used to play and sing with/for)..

 and don't let that put you off.. I'm just sharing my perspective and like to be totally responsible for what type of information is said about me. .. so I tend to be closemouthed. I have kids and their emotional needs to juggle, relatives out the ying yang, etc.

peace and love, apple - ..... Mary Magdalen Dx 4/10/2008, IDC, 5cm, Stage IV, Grade 3, 4/9 nodes, mets, ER+, HER2+
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Mar 4, 2012 07:14AM Momine wrote:

Thanks Chrissy.

Dx 6/1/2011, ILC, 5cm, Stage IIIB, Grade 2, 7/23 nodes, ER+/PR+, HER2- Chemotherapy 6/19/2011 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Surgery 9/12/2011 Mastectomy: Left, Right Radiation Therapy 1/8/2012 Surgery 3/7/2012 Prophylactic ovary removal Hormonal Therapy 3/31/2012 Femara (letrozole)
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Mar 4, 2012 08:04AM DebbieB11 wrote:

(I posted this already but it disappeared, maybe I put in in the wrong thread, so I am trying again.)A couple months ago my very best friend learned her breast cancer has metastasized to her spine, with another small spot on her rib.  She and I both had breast cancer, hers 10 yrs ago and me 8 years ago.  I know I can't really and truly understand what she is going through, but of course want to help her in anyway I can.  I have composed a note to her and was wondering if you could read it and let me know if it would be OK to send to her.  I think if ppl who are essentially going through the same thing read it and gives me the ok to send then I would feel comfortable doing so.  I don't want to say the "wrong" thing (btw, she wants me to call the disease "bone bug").  So here it is.....

"You are my best friend.  I know that hearing you can live with this "bone bug", and that your pain can be managed, carries a lot more weight coming from someone with some form of a medical degree, than it does coming from me.  What I can do is listen.  I listen to you when you tell me about your appointments.  I hear you tell me the encouraging, hopeful news that both oncologists and the radiologist have now given you.  Because I listen, I can repeat back the facts to you to help assuage your fears, when you need reminding.  I will remind you till I can't talk anymore (or type). 

There is more to managing this bone bug than hormone blockers and pain management.  Just as important is managing the emotions.  So much on your plate and that is one aspect where I want to be right in the thick of things.  Here comes that "listening" thing again. I really want to listen.  Listen to you cry.  Listen to you be angry.  Listen to you learning to deal with what is happening to your body.  Help you adjust, tweek and tweek again your emotions till you find your new normal, both physically and emotionally.  You will get there.  And I am going to be there aaaallllll along the way."

So what do you think?  Is it ok to say all that?  Is it ok to say "You will get there" even tho I don't have a medical degree?  I firmly believe she will.  Thanks in advance for any help and suggestions you give.

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Mar 4, 2012 08:15AM chrissyb wrote:

Hi Debbie as a stage IV I would love to recieve a letter like that from my best friend. The only thing I would delete is the 'You will get there' sentence otherwise you are good to go.

As a bone metster mystelf, I can assure you that it is possible to live a long time.

Love n hugs.  Chrissy

I found my peace which gave me strength. 52 at dx. Dx 12/8/2003, IDC, 4cm, Stage IV, Grade 2, 0/12 nodes, mets, ER+/PR+, HER2-
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Mar 4, 2012 08:24AM angelsister wrote:

I'll be there for you? Instead of you'll get there? I think its a lovely note x

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Mar 4, 2012 08:40AM ma111 wrote:

Crissy, you are a genius!

Dx 8/4/2009, IBC, <1cm, Stage IV, 19/19 nodes, ER-/PR-, HER2+

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