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All Topics → Forum: Stage IV and Metastatic Breast Cancer ONLY → Topic: Where do I fit in

Topic: Where do I fit in

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".

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Posted on: Nov 18, 2007 08:06 PM, edited Nov 18, 2007 08:06 PM by BLESSED4

DENVER, CO Joined: Nov 2007 Posts: 97

BLESSED4 wrote:

Hi,

My name is Angela and i am new on this board. I have stage IV IBC. I was diagnosed last August(and still struggling). I was hoping to find encouragement since these last few months have been hard. I am currently on GEMZAR. I have had a lot of problems with it but hoping that it is doing it's job. I guess my problem is I am too afraid to ask questions. The one time I did I asked How long do I have. Onc told me two months w/o treatment maybe 2 years. I regret asking that question. Now thats all I think about is how much time I have left. I am definetly not ready to go til I raise my three babies.

DX 8/06 stageIV IBC BONES
Dx 8/23/2006, IBC, Stage IV, 1/12 nodes

Posts 1 - 16 (16 total)

lastminuteD… Joined: Jul 2006 Posts: 405

Nov 18, 2007 09:04 PM lastminuteD wrote:

Angela - I'm so sorry you have had to come to this website. I am not a stage iv but I wanted to respond. The women on this site are wonderful and I'm sure they'll be along soon. I read again and again about the women dealing with stage iv and I'm in awe. I see them encouraging "newbies" all over these boards everyday that there are so many new drugs, you and your team just need to find the ones that help you. So, please read over the other posts to get information, ask questions etc. My prayers are with you and your family.

Dawn

Dx 12/1/2005, IDC stage I, Grade 3, 0/5 nodes, ER+/PR+/HER2+
Dx 3/28/2007, IDC, 3cm, Stage II, Grade 3, 0/0 nodes, ER-/PR-, HER2+

bevnurse CA Joined: Jan 2005 Posts: 516

Nov 18, 2007 09:15 PM bevnurse wrote:

Hi Angela,

Welcome to the boards it is great to have you here although I am so sorry you had to join us. This is a wonderful group of women and you will find tons of support here.

I know what you mean about those scary questions. They run around in my head all of the time and I seriously have to consider if I want to hear the answer before I ask the question! What I have discovered is it is very safe to ask those questions here first rather than your Dr. (who by the way should be smacked upside the head for the answer he gave you!). On this site you will get many different perspectives and since cancer treatment really is an art there is no one right answer.

My onc will not give me an expiration date (she says that is for cheese and other milk products not people) because the science is changing so quickly no one knows what the future holds. So we just put our heads down and keep fighting the good fight jumping to whatever the next treatment is if one fails to work.

Maybe getting a second opinion would make you feel better...someone less doom and gloom perhaps?

Whatever you decide just know we are here for you!

Hugs,

Beverly
Dx 11/11/2004, IDC, 4cm, Stage II, Grade 3, 1/8 nodes, ER-/PR-, HER2+

RobinWendy Long Island, NY Joined: Mar 2007 Posts: 1,982

Nov 18, 2007 09:20 PM RobinWendy wrote:

Angela:

Try as hard as you can to put your onc's words out of your mind. No one can predict the path of this disease. some people succumb quickly and others do very well. I am just days from my fourth anniversary of my Stage IV diagnosis and I have been fortunate enough to have been sympton free all this time. I was in remission for almost 3 years with Femara (for ER+ and am now on Taxol and Avastin, which I am tolerating very well so far). Perhaps you should get a second opinion from a more upbeat onc who will not fill your head with dire predictions. Best of luck to you!

Robin

Fllorik Joined: Aug 2006 Posts: 1,672

Nov 18, 2007 09:27 PM Fllorik wrote:

RobinWendy- fantastic!!!! keep those feet dancing!!!

Hi Angela, You have come to right place for love, support and guidance. I have recieved all that and more from this wonderful, caring group of women. Please know that you can ask ANYTHING and you will surely get an answer.

I have faith in you and know you will do just fine!

Member_of_t… Washington, DC Joined: Sep 2004 Posts: 7,106

Nov 18, 2007 09:53 PM Member_of_the_Club wrote:

Hey Angela, i know someone who has been stage IV for over ten years. And she started that tough journey before they had the treatments they have today. If your onc speaks to you this way, you may want to find another onc who can offer you hope, because there is hope.

BLESSED4 DENVER, CO Joined: Nov 2007 Posts: 97

Nov 18, 2007 10:29 PM BLESSED4 wrote:

I have had issues even getting an Onc to see me. I get SSDI so I don't qualify for medicaid and medicare won't kick in until OCT08. She is the only one that would see me. I am not that happy because I don't know if I am gettin the right treatment. I am barely getting a PET scan Tuesday thanks to the KOMEN foundation. But I have to apply through the Drug companies to jusr even get CHEMO

DX 8/06 stageIV IBC BONES
Dx 8/23/2006, IBC, Stage IV, 1/12 nodes

SANDER2 NE Joined: Nov 2007 Posts: 13

Nov 18, 2007 10:50 PM SANDER2 wrote:

Hi Angela. I am new to this "chat room" stuff but I wanted to suggest that you check with the State of Colorado regarding your eligibility for Medicaid. You indicated that you received SSDI. Do you receive any SSI or just SSDI? If you receive a dollar or more of SSI then you may qualify for Medicaid. I live in Nebraska so the regulations in Nebraska may be different than your state. If you receive SSDI then ask about a Medicaid Share of Cost Program. The income guidelines may be higher for Individuals with depedent children but ask about Medicaid for persons with disabilities as well. Ask about Women's Cancer Program as well. Best wishes to you! You will remain in my prayers!

--- Shawna

BLESSED4 DENVER, CO Joined: Nov 2007 Posts: 97

Nov 18, 2007 10:54 PM BLESSED4 wrote:

I have done all of that. I don't qualify. I even called the governors office. Its a crazy situation. Now I just hope this treatment works. One more year til medicare.

DX 8/06 stageIV IBC BONES
Dx 8/23/2006, IBC, Stage IV, 1/12 nodes

SANDER2 NE Joined: Nov 2007 Posts: 13

Nov 18, 2007 11:08 PM SANDER2 wrote:

Sorry to hear that you haven't been able to find the financial resources that you need. I hope that your call to the Governor brings about some changes. You would be a good lobbyist to change the welfare system! I work for the State of Nebraska determining eligibility for public assistance. When I hear stories like yours, it breaks my heart & makes me mad! Sometimes the "system" helps those who don't want to help themselves & doesn't help those who truly need it! I like to "fix" things; it's my nature. I wish I could help you to find some financial peace with your medical situation! I will continue to pray for you & your family. How is your treatment going? I just started my 2nd round of chemo (cytoxin/adriamyacin) last Thursday. I have 3 doses left before I start radiation and possibly herceptin. I sure hope that I can regain my appetite soon. I am hungry but can't find too much that sounds good to eat or drink! The nausea is under control now but just don't have much of an appetite. I really can't afford to lose too much weight!

BLESSED4 DENVER, CO Joined: Nov 2007 Posts: 97

Nov 18, 2007 11:16 PM BLESSED4 wrote:

I did that tx last year so I know what your going through. I am on my third round of Gemzar and monthly Zometa. PET scan Tuesday. I know i need a Bone scan to check if chemo is working. I guess I wait until the 28th to find out the tx plan

DX 8/06 stageIV IBC BONES
Dx 8/23/2006, IBC, Stage IV, 1/12 nodes

ozzie2 PERTH, WA Australia Joined: Jan 2007 Posts: 1,297

Nov 19, 2007 07:25 AM ozzie2 wrote:

Hi Angela I think what u need to find out is if you are, ER and PR Pos or neg and HER2 neg or Pos... then u will kinda have your answers and then we here can tell u what kind of treatments that are suitable for u...and then u can hit the Onc with all this information..

Zometa is for the bones but I dont know a thing about Gemzar I am sure someone else can help with that..

The PET scan will also tell if the chemo is helping u also a CT scan..and also Tumor markers ( blood test)

just hang in there hon and keeping it all crossed for a great results..

hugs

ER/PR + HER2- bone and skin mets

badboob67 Joined: Jan 2007 Posts: 3,270

Nov 19, 2007 02:11 PM badboob67 wrote:

Hi Angela,

I am sorry you have found need for this message board, but am glad you found us! There are lots of wonderful people here to provide information and support.

Please, please....FORGET ANY TIME LIMIT you may have heard. First, doctors are relying on outdated statistics--many new drugs have come out just this past year. Secondly, everyone is different. I spent the first 6 months or so after my bc and mets diagnosis (woohoo--all the bells and whistles from the get-go) worrying about that "up to two years" statement my doctor had made. Well, it's going to be two years in February (not that far off!) and I'm still stable.

As for where you fit in, you are welcome here with open arms. We all have our own unique diagnosis, but also so much in common. I have 3 boys and am going to fight to the very last second to be here as long as I can.

We're a pretty diverse bunch, but I have found there is usually at least one person who has gone through or is going through the same thing when I need help. Please, post freely and as often as necessary. You aren't in this alone!

(((HUGS)))

Diane

When you're down to nothing, GOD is up to something!
Dx 2/15/2006, IDC, 5cm, Stage IV, Grade 2, 24/27 nodes, mets, ER+/PR+, HER2-

AliceJean Amherst, OH Joined: Aug 2005 Posts: 663

Nov 19, 2007 07:31 PM AliceJean wrote:

I thought Gemzar was for her/2 positive patients?? Anyway, Angela, there IS hope; if you have to stay with this onc, do so, but YOU take charge of your treatment and arm yourself with information. This site is awesome, just ask questions here if you can't ask them at the dr., you will get answers and then you can confront the dr. with how smart you are!!! Best of luck to you, we are all on your side. Since you seem to have checked out many avenues for help, I assume you have checked w/drug companies regarding whether they can supply you with drugs at a reduced cost? Stay strong, we are with you...

Alice Jean
Dx 1/5/2007, ILC, 1cm, Stage IV, 3/22 nodes, mets, ER+/PR+, HER2-

Fllorik Joined: Aug 2006 Posts: 1,672

Nov 19, 2007 11:35 PM Fllorik wrote:

Diane- you always have wonderful way of making someone feel good and welcomed. I always look forward to your posts!

BLESSED4 DENVER, CO Joined: Nov 2007 Posts: 97

Nov 20, 2007 07:55 AM BLESSED4 wrote:

Thank you all for the support

DX 8/06 stageIV IBC BONES
Dx 8/23/2006, IBC, Stage IV, 1/12 nodes

teejay Cedar Park, Tx Joined: Nov 2007 Posts: 2

Nov 21, 2007 01:40 AM teejay wrote:

Thanks for your comment about being Stage IV for 10 years. I was diagnosed in January and spent the next few months preparing to die! My treatment is going very well, my oncologist is the greatest, and finally I am beginning to realise I just may not die as quickly as I thought. Now what am I going to do? Or better, now what do I want to do? It is so good to find this place to hear from other women in the same boat I'm in and be able to talk to somebody who knows what it's like. The isolation has been torturous. Thanks for being there, ladies.

teejay

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Topic: Where do I fit in