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Topic: A place to talk death and dying issues

Forum: Stage IV/Metastatic Breast Cancer ONLY —

Please respect that this forum is for members with stage IV/metastatic breast cancer only. There is a separate forum for caregivers and friends: Caring for Someone with Stage 4 or Mets.

Metastatic breast cancer (MBC; also called stage IV) is breast cancer that has spread to other parts of the body, most commonly the bones, liver, brain, or lungs. Metastatic breast cancer can be treated but not cured. Metastatic disease is NOT hopeless. There are a wide variety of treatment options for metastatic breast cancer, and new medicines are being tested every day. More and more people are living life to the fullest while being treated for metastatic breast cancer.

Note: Please contact your doctor for any specific concerns about symptoms you are experiencing or your course of treatment.

Learn more about living with MBC.

Intro medically reviewed by: Brian Wojciechowski, M.D.
Last review date: November 22, 2020

Posted on: Jun 7, 2011 03:43PM

ma111 wrote:

This post is for those of us with concerns and issues about death and dying to talk about them.

IF YOU CANNOT HANDLE IT, THAN GO TO A DIFFERENT POST PLEASE. We do not need people telling us to live life or to hear that other people have lived a long time, we have concerns. We are living life and would like for our diagnosis/prognosis to be changed. However, we are stuck with it and not in denial.

Dx 8/4/2009, IBC, <1cm, Stage IV, 19/19 nodes, ER-/PR-, HER2+
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Jun 12, 2011 01:39PM del15 wrote:

Suze35,

AFAIK, the beneficiary will get the insurance money regardless of the will. At least this is how it works here. You should verify that with your insurance company.

Take care,

Yan

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Jun 12, 2011 01:58PM nurse-ann wrote:

I would second what leprechaun has just said.  I've had several occasions to talk with my life insurance company recently regarding accelerated benefits etc and found them very accessible. 

Dx 11/18/2006, ILC, 5cm, Stage IV, Grade 2, 15/16 nodes, mets, ER+/PR+, HER2-
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Jun 12, 2011 02:56PM imbell wrote:

Ah the circling vultures. I have mentioned my brother is in Palliative Care for lung cancer. A few days ago his deceased wife's aunt showed up asking if he had made his financial arrangements. They stayed 10 minutes. This coming from an idiot whose idea of financial planning has been hanging at the casino. My brother has already had a visit from his lawyers when advised to do so by his doctor. I so wish he had more time.  No commiserations please. Just sharing.

Dx 9/10/2009, IDC, 5cm, Stage IV, Grade 3, 5/17 nodes, ER+/PR+, HER2-
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Jun 12, 2011 03:13PM Alpal wrote:

Since I'm broke, guess I won't need to worry about the vultures. Silver lining? Hmmm...

Allison Dx 7/2008, IDC, Stage IV, mets, ER+/PR+, HER2-
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Jun 12, 2011 05:40PM Mazy1959 wrote:

Beneficiary gets insurance here too regardless of will. HUgs

Bone marrow mets in 90% of bone marrow. Dx 3/6/2003, ILC, 3cm, Stage IIB, Grade 2, 2/9 nodes, ER+/PR+, HER2- Dx 12/19/2006, ILC, 4cm, Stage IV, Grade 2, 0/0 nodes, mets, ER+/PR-, HER2- Dx 4/25/2012, ILC, Stage IV, Grade 2, 0/0 nodes, mets, ER+/PR+, HER2- Dx 8/4/2012, ILC, Stage IV, Grade 2, 0/0 nodes, mets, ER+/PR+, HER2- Chemotherapy 8/9/2012 Abraxane (albumin-bound or nab-paclitaxel)
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Jun 12, 2011 08:02PM - edited Jun 12, 2011 08:38PM by blondiex46

Well I don't have any life insurance and hopefully Science Care will take care of everything and give me back to my family without them having pay for cremation, etc.  My mother died when I was 32 and my father at 34....She died of ovarian cancer and knew it, we talked about everything when the money was she put me on their account she told me what she wanted which was to die at home and my father said no so she died in hospice, people pick who they want to be with them with they die,  I walked out of the room to say goodbye to a friend of mine who came to visit and when I came back she had passed, sad but as I said we discussed everything....

Original 8/96 - 1cm, chemo, rads. Recurr..9/09...Mets to lungs, chest wall, lymph nodes under arm & chest, cervical & lumbar spine, ribs, hip. Femera, Falsodex, Zometa, Xeloda, Gemzar,Taxotere, Adriamycin,Havalen.WENT OFF CHEMO 7/20/14 Dx 9/1/2009, 3cm, Stage IV, ER+/PR-, HER2-
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Jun 12, 2011 08:35PM - edited Jun 12, 2011 08:39PM by Suze35

Thank you everyone for the input regarding my LI. I guess I was afraid to call the company, I know that is silly.

class='post_sig'>
Diagnosis: 9/17/2010, IDC, 6cm+, Stage IIIc, Grade 3, 8/12 nodes, ER-/PR-, HER2-

Original dx Stage IIIa TN 9/2010 Dx 9/19/2011, IDC, 6cm+, Stage IV, Grade 3, 8/12 nodes, mets, ER-/PR-, HER2-
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Jun 12, 2011 09:43PM CoolBreeze wrote:

I just bought that book mentioned earlier on Amazon.  I have two kids but I guess they'll have to share. :)

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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Jun 12, 2011 11:00PM china wrote:

TexasRose, Your video was so touching and beautiful, it made me cry. I am so sorry you have this stinking disease at such a young age. CryDawn
Dx 4/6/2007, 1cm, Stage IV, Grade 3, mets, ER+/PR+, HER2-
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Jun 12, 2011 11:03PM Alpal wrote:

Rose - I finally watched your video. Beautiful!

Allison Dx 7/2008, IDC, Stage IV, mets, ER+/PR+, HER2-
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Jun 13, 2011 12:32AM Lena wrote:

Goodness!!!  All this legal mumbo-jumbo is making me GLAD I'm poor and have jack shit. Who the hell who doesn't make obscene amounts of money can AFFORD an attorney and to have all that crap done?!!?!? OMG! Praise ratness I don't have to be bothered with it. And please don't suggest that I do, because other than writing a will for my "valuable only to me" possessions and maybe having it notarized since I can get that done for free at the bank, that's all, folks! Cripes! :-O

Why buy shampoo when you can get real poo for free? Dx 2/9/2009, IBC, 6cm+, Stage IV, Grade 3, mets, ER+/PR+, HER2+
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Jun 13, 2011 10:15PM texasrose361 wrote:

WOW thanks so much SAS and Karie- so much to think about...

Apal- i second that, def a silver lining- i dont own much and and a broke joke. But i think there still will be the leeches that want every little thing like photobooks and such... I remember when my grnadmother passed over 20 years ago, my moms sister still hasnt talked with either of her siblings over it!!!!!

Thanks china and rose, this is the first chance i've had to get on line today so i never made it private so lucky y'all ;)

Oh and i was DETERMINED to talk to my dr about either an antidepressiant or antianxiety med but they called me 30 mins from my appointment saying that there was some sort of leak and the fire department wasnt letting anyone in the office (i drive 3 hrs to get there) so i actually had to go to another location for my herceptin (which really want due til wed but for some reason i was on the calendar) so i never got to talk or see my doc... I am going to call tomorrow and ask if they can phone it in.....

Children 10g, 10b, 8b :) Mets to ribs, sternum, femur, esophagus, retroperitoneal LN, lungs, ocular nerve, brain. Dx 7/22/2010, IDC, 6cm+, Stage IV, Grade 3, mets, ER-/PR-, HER2+
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Jun 13, 2011 10:54PM - edited Jun 13, 2011 11:38PM by sas-schatzi

TO ALL -----Karieb is soooooooooo right . I saw 3 cousins as excutors RAPE the estates, they were entrusted with.

I was entrusted with one estate. I did as several have suggested above that all items on the gift list were sent to the intended receiver before my dear M died. Dear M was not my mom she was a dear relative. I enclosed a letter that said "Dear M has just entered assited living and we are in the process of closing her condo. You are receiving the following item because she wishes you to have it. Please drop her a note or a phone call to tell her that you have received it. It will give her great joy to talk about the precious item she has sent you. __________my name. Then I wrote a hand written note on the letter as to what was sent.  AND had include her new address and phone number.----------Going to close this to check back one page something is starting to sound to familiar-------Wink sheila

Life's journey is not to arrive at the grave safely in a well preserved body, but rather to skid in sideways, totally worn out shouting "holy crap....what a ride".
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Jun 13, 2011 11:37PM sas-schatzi wrote:

 TO ALL----From page  one to this is page 5----------there are so many great suggestions on preparation. Preparation is so good, It avoids pitfalls that didn't have to be. I would not let my son go off to gollege without at least a "Living will, power of attorney, and Surrogate for health care' In a do over I would have demanded a Will. Everyone thought I was typically me OCD.  But If we aren't prepared------tomorrow could be our day. Then what------things are a mess.

Say to yourself based on all the good info here--------will it allow my loved ones an easier time, will it prevent someone from taking advantage of what I wanted. Can I trust those that I have entrusted everything too, to not take advantage of my trust. Does the law in my state protect what I have done.

I had a dear friend prepare for death for 18 months. After he died, his wife found out she wasn't on the bank account. She was locked out.-----------no money for anything. It was just as we were receiving Bush's Tax money thing, it was 500$-------I just signed it over to her.  A miss on their part they thought they had their bases covered.

 Cover the bases-----sheila

Life's journey is not to arrive at the grave safely in a well preserved body, but rather to skid in sideways, totally worn out shouting "holy crap....what a ride".
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Jun 14, 2011 08:30AM texasrose361 wrote:

Sheila i really like that idea of the note going to the indended recipiant. Thats a great time to give away things when you're reaching the hospice or assisted living stage. I have gone back and forth with the few little things i'd like to gift to people- WHEN????? i dont want them to think i am giving up my fight but i want to know they got it and enjoy it :)

Children 10g, 10b, 8b :) Mets to ribs, sternum, femur, esophagus, retroperitoneal LN, lungs, ocular nerve, brain. Dx 7/22/2010, IDC, 6cm+, Stage IV, Grade 3, mets, ER-/PR-, HER2+
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Jun 14, 2011 08:59AM blondiex46 wrote:

I like giving the things when you are going into hospice idea.  I also like the note thing....I don't have anything. I do not own my house and do not have any money but I do have jewelry that is what I am leaving, that can be done before......thanks guys for the ideas!!

Original 8/96 - 1cm, chemo, rads. Recurr..9/09...Mets to lungs, chest wall, lymph nodes under arm & chest, cervical & lumbar spine, ribs, hip. Femera, Falsodex, Zometa, Xeloda, Gemzar,Taxotere, Adriamycin,Havalen.WENT OFF CHEMO 7/20/14 Dx 9/1/2009, 3cm, Stage IV, ER+/PR-, HER2-
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Jun 14, 2011 09:21AM DivineMrsM wrote:

Wow, this topic began only a week ago and so many of you have something to say; so it had to be a very timely, important subject.  I just found the topic today; read the first page...plan to read all of the pages (currently there are 5 pages) when I have time.....and will be keeping up to date on what everyone has to say on this matter.

found lump 12/22/10~er+/pr+/her2- stage iv bone mets------------- Chemo~lumpectomy~radiation~arimidex------------- March2019/Ibrance-Aromasin---------- Sept2019/Verzenio-Aromasin
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Jun 14, 2011 09:39AM - edited Jun 14, 2011 09:40AM by Fitztwins

MOthers with young daughters, here is an idea to do with your girls now.

A friend mentioned this journal that you and your daughters can keep together, share thoughts and privacy. She started it a week ago (with her 10/11 year old) and it is going wonderfully.

http://www.amazon.com/Just-Between-Us-No-Stress-No-Rules/dp/0811868958/ref=sr_1_10?ie=UTF8&qid=1308058069&sr=8-10

I have boys, they would so not do this!

I have a journal of 'letters' to my boys about my thoughts, advice and just btdt stuff. I also have a box with books and some other keepsakes for them to have. Simple, not to calculated. Oh, not to mention the dozen scrapbooks I have made over the years.

Enjoy Every Sandwich. Dx 12/12/2004, IDC, Left, 3cm, Stage IV, metastasized to bone/lungs, Grade 2, mets, ER+/PR+, HER2+ (FISH) Surgery 1/18/2005 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left; Reconstruction (left): Free TRAM flap Chemotherapy 1/31/2005 AC + T (Taxol) Radiation Therapy 4/30/2005 Breast, Lymph nodes Targeted Therapy 5/31/2005 Herceptin (trastuzumab) Hormonal Therapy 12/31/2005 Femara (letrozole) Hormonal Therapy 6/1/2008 Aromasin (exemestane) Targeted Therapy 6/30/2008 Herceptin (trastuzumab) Hormonal Therapy 6/14/2013 Arimidex (anastrozole) Targeted Therapy 9/4/2015 Perjeta (pertuzumab)
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Jun 14, 2011 09:51AM reesie wrote:

Janis, that's a wonderful idea.  Funny thing is my kids are older but still live at home.  I'm pretty sure both my twins would love this idea (boy and girl) not sure about my oldest son.  I think both my boys would have done it at a younger age, but maybe not as young as yours are.  I might just start it now, even at their advanced ages. 

No matter what I think I definitely will start journaling for all of them.

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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Jun 14, 2011 10:14AM rella40 wrote:

Hi Girls, I have only posted a few times on the TN thread, and I have spent the last couple of days reading all the posts here and I would just like to say thank you for all the info being posted.  I have been stage IV since 2006, and in remission twice, however the remissions are getting shorter, and the progressions faster, so I am trying to get a grip on what is yet to come.  I had come to think of myself as being chronic, and really thought after all this time of good results, it would just continue.  I am not giving up, I am still functioning, gardening (lightly), walkling the dog, etc.  But I know it can explode at any time now, so I think I should quit procrastinating and do some of those things mentioned here.  I have 2 boys, 17 and 27 (single), and no grandchildren.  I love the legacy book idea, and I am also planning on getting the audio books for my future grandchildren, where you record yourself reading the story.  Just sounds like a sweet way to connect. I see some of you are soooo  young, with small children, breaks my heart.  Prayers and hugs to all.

Dx 2/14/2002, IDC, 1cm, Stage IV, Grade 3, ER-/PR-, HER2-
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Jun 14, 2011 11:58AM Claire_in_Seattle wrote:

One thing I would add is a cookbook of all your favorite recipes.  I asked my grandmother for that when I graduated from high school.  She did it, and I still use in when making brownies, muffins, tea breads, and cakes.  I made one for a childhood friend and third cousin when she graduated, and she still uses hers.

Still the best chocolate brownies I have ever tasted.

These were all great ideas.  I am trying to think if there is anything else my mother did.  She was really concerned with a smooth transition, and she achieved that goal.  The one thing that I haven't seen is to make sure the executors can find all the assets.  She had most organized, but there were a couple of stock funds and one small bank account that surfaced two years later. We gave it to charity as opposed to re-opening the estate.

Even if not Stage IV, I have things I need to clean up so thanks for this thread.  And I thought I would add these suggestions.

My big one is what to do with my great aunt's silver.  Her and my mother's wish were that it stay in the family.  I have know idea who might value it.  I may need to adopt one of my friends as think more important that the recipient value it than it go to a family member.  I don't have children. - Claire

Completed all treatment (AC +T, lumpectomy, radiation and 5 years of AIs - anastrazole). Now celebrating every single day for the wonderful life I have been granted. Dx 8/2009, IDC, Left, 2cm, Stage IIB, Grade 3, 1/21 nodes, ER+/PR-, HER2- (FISH)
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Jun 14, 2011 12:57PM ma111 wrote:

Heelo all,

I have been in Bethesda for the vaccine trail, so I have not posted for a while. I stay at my sister's that is in charge. My other sister has already trying to take over and pump for info. I am glad the sister in charge is assertive enough to speak up and say "she has this arrangment made and we are sticking with it". It all in writing and I keep reminding my one sister that the other one is in charge. I so hope there are no problems and things go smoothly!!!!!! I have started getting assertive with that sister and I have repeatedly told the whole family which sister is in charge, even e-mailing it to some. Why do I have to do this? there is already BS>>>>>>> and I not dead yet!!!!!!!!! This post resulted me in having a talk with my sis in charge to reinforce that she is in charge and everything is in writing and she knows where the orginals are and she has a copy. Everyhting is also wittness, signed and notarotized.

Per advised we talked about the house in her name. She said that if I put her and my 17 year old daughter on the deed, than they would not have to pay inhertinence tax and my daughter would not be able to sell it without my sister's approval. (Earlier I talked about putting it in her name now.)

I still have not bought the Hallmark book that I want to do, but have started letters for my daughter, one for college grad, general, etc.

Dx 8/4/2009, IBC, <1cm, Stage IV, 19/19 nodes, ER-/PR-, HER2+
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Jun 14, 2011 01:16PM Lena wrote:

There's just one thing more I need to say, which rella's post unintentionally/inadvertently reminded me of.  Just because we Stage IV cancer patients are thinking about and openly discussing dying and death in this thread, and/or have decided to, started or finished creating legacies to leave for our loved ones, or "wrapping up our affairs" legally and financially for the Very End -- well, OK, I'll just say it:

 

 

It makes me see scarlet red when a sister here who is thinking/talking about/planning/doing/is done with all of these things -- feels upset or embarrassed NOT because she's going to lose the life she took joy in living; NOT because she feels she won't have time to do something she always wanted to do, and NOT because she won't be able to spend more time with her loved ones or see her children grow up, graduate HS or college, or get married -- but rather because she feels, and she's afraid that her other sisters here are going to think of her as having "given up the fight" against her disease so she apologizes for talking about this or making any kind of plans and says she “isn’t giving up.” NO NO NO NO NO!!!

 

Sisters, please excuse me if this truthsome thread has led me into being so excessively truthsome you find it offensive, as (IMO too) many people DO find truth -- about ANYTHING, I'm sad to say.  In keeping with ma111 when she opened this thread, I'll at least warn you though: if the pain of truth is too excruciating for you, please scroll ahead to the next post and don't even read the rest of this one as soon as you get to the period at the end of this sentence.

 

 

OK now about this "fight" and "we're brave warriors" business; GRRRRRR! I think a LOT of us could stand to get some effin' SENSE already! There is no "fight," not at Stage IV. Remission/an affair with NED is merely one of life's many unexpected surprises, a good one instead of a bad one, that's all. The more remissions, and the longer they last -- presuming the good of remission doesn't end up canceled out in the way of too many or too nasty SEs -- the better! Dancing with NED? Woo-HOO! And you feel good enough to DANCE? Double Woo-HOO!!!:-D Even “just”stability is cheersome. But this is not a FIGHT, it's a CRAPSHOOT! I cheer a sister’s good remission (a long one with few, light or no SEs) or stability in the same way I’d cheer her if she won a couple hundred grand or more in the lottery. 

 

For the most part, those of us who aren't going to be "lucky" enough to have a run-in with the proverbial bus (or something else) before the BC can get us, will be gotten by the BC.  It frickin SUCKS, but it's TRUE. 

 

 

Which means, I guess I'll have to write an addendum in my will too, so if that bus doesn't hit me tomorrow, my Pack Rat will know in uncertain terms that I did NOT "lose a battle" with cancer before I finally died from it, or, I did NOT "fight" a long illness before I died from it, or whatever euphemistic brave warrior crap that I hope he doesn't tell anybody. At least I don't have to worry about him telling anyone I "became an angel," since he's agnostic. I am just seriously ill as are all sisters who have metastatic breast cancer, and if nothing else gets me first, I'll have died from a serious disease.

Why buy shampoo when you can get real poo for free? Dx 2/9/2009, IBC, 6cm+, Stage IV, Grade 3, mets, ER+/PR+, HER2+
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Jun 14, 2011 01:36PM steelrose wrote:

Love ya, Lena! Point well taken. I celebrated my b'day last weekend and seriously wondered if it will be my last. Last year I was too whacked out on chemo to really celebrate... this year I'm NED and gloomier than ever. Explain that! Still I love a challenge and I'm spitting mad! Impossible odds? You bet. But I'm still a foolish gambler.

Dx 1/22/2010, IDC, Stage IV, mets, ER+/PR+, HER2-
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Jun 14, 2011 01:46PM texasrose361 wrote:

Thanks fitz- i just added that book to my cart! On pay day i'll check out... Now what to do equally for my son... LOL

Clare- oooh good idea too! I know my husbad wont remember how i make anything that i make LOL

Lena- Honesty is the best policy!

With that being said I do feel that there is a fight- not a fight for my life because hells bells i know that BC prob will get me before that bus, but a fight for time and quality time, not being sick all of the time time. Get what i mean? If this or that that i do will give me an extra month or day or even an extra hour holding my babies i will fight! Next month will be a year since my DX and I KNOW i have fought this whole year. I fought the urge to puke, i fought the urge to say no more treatment, and in that open honest policy i fought the urge to blow my brains out- yes horrible that me someone who is mostly sunshine and lollipops had the thought that it would be better for my family to lose me quickly than slowly watch me deterioate. But i slapped myself in the face and said "Stupid woman! if you just hold on and fight through this you may be around when a true cure comes around... I think if i can just make it 10 years there will be a cure i just know it!" Please dont jugde...

BTW lena i respect you and enjoy your posts i dont want you to think i am upset by what you said- just my honest reply :)

Children 10g, 10b, 8b :) Mets to ribs, sternum, femur, esophagus, retroperitoneal LN, lungs, ocular nerve, brain. Dx 7/22/2010, IDC, 6cm+, Stage IV, Grade 3, mets, ER-/PR-, HER2+
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Jun 14, 2011 04:46PM amontro wrote:

I have a question.  Just in case I don't go through whatever $ I have left and just in case I don't have to cash in my insurance policy to live on:  When a person is on title 19 and the state takes their SS checks and all their assets, are they allowed to take the proceeds of life insurance when it's left to a beneficiary?  When my mother died the state of Ct took every penny, but I can't remember if they took her policy of $1000 from where she retired.  Thank you for responses.

Dx 9/2008, Stage IV, Grade 3, mets, HER2+
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Jun 14, 2011 05:41PM nurse-ann wrote:

amontro:

I had to make arrangements for this regarding my brother in my mothers will.  We set up a trust in NY state (where my brother lives) with a couple of my sisters as trustees.  If my mother were to leave my brother money directly, he could loose is Medicaid, and other benefits.  The trust prevents that and controls how this money can be released to him.  I think it cost around $1500 to set up the trust.

Dx 11/18/2006, ILC, 5cm, Stage IV, Grade 2, 15/16 nodes, mets, ER+/PR+, HER2-
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Jun 14, 2011 08:27PM Lena wrote:

Happy birthday steelrose. I just had mine too June 9th but celebration -- cheesecake made especially for me, and "fireworks" with my Pack Rat!  ;-) over the weekend. My third since diagnosis (Stage IV at the get-go). Hmmmmm Three down, two more to go if I "win" at the craps table. LOL

texasrose, I see no problem with agreeing to disagree. It's OK. 

Why buy shampoo when you can get real poo for free? Dx 2/9/2009, IBC, 6cm+, Stage IV, Grade 3, mets, ER+/PR+, HER2+
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Jun 14, 2011 09:25PM blondiex46 wrote:

Happy birthday both of you and you know everything that happens I think that, I do think I will be here this summer and thanksgiving and christmas, easter I assume so but next year is the iffy part and that is only cause the medication is not working and who knows what will happen with the new one I go on tomorrow....

Original 8/96 - 1cm, chemo, rads. Recurr..9/09...Mets to lungs, chest wall, lymph nodes under arm & chest, cervical & lumbar spine, ribs, hip. Femera, Falsodex, Zometa, Xeloda, Gemzar,Taxotere, Adriamycin,Havalen.WENT OFF CHEMO 7/20/14 Dx 9/1/2009, 3cm, Stage IV, ER+/PR-, HER2-
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Jun 14, 2011 09:27PM - edited Jul 23, 2011 05:35AM by thats-life-

This Post was deleted by thats-life-.
It is the opportunity to build what one loves into something permanent that makes this very difficult game worthwhile. mets skull, rib, hip, spine. Dx 8/2010, IDC, 1cm, Stage IV, mets, ER+/PR+, HER2-

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