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Topic: mets

Forum: Stage IV/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: Aug 4, 2007 11:55AM

neva4 wrote:

This is my 1st post so I hope I'm doing it eight
I have been mets for a year and a half now and have just found out that people with mets are not thought of in the same way people who are in the early stages of CA have I been living in a dream world for the last year and half. Log in to post a reply

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Aug 4, 2007 11:59AM Mary5 wrote:

You are doing it right! You will find a world of support here on this site. People with cancer are people with cancer. Doctors have considered mets a chronic condition. There will be many others who will respond to your post. Consider yourself lucky.
Mary
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Aug 4, 2007 05:36PM LuAnnH wrote:

Neva,

You enjoy that dream world. I think we all live in that world. There are alot of options and very good tx options now that the onc treat stage IV as a chronic illness now. Glad to hear you have been sailing through well so far!

LuAnn
LuAnn -- Dx 7/2/2006, IDC, 2cm, Stage IV, mets, ER+/PR+, HER2+
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Aug 4, 2007 06:49PM jacqniel wrote:

Tell us more about yourself! Also, what do you mean by not being thought of in the same way?
So glad you found us!
Jacque
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Aug 4, 2007 11:13PM katie11 wrote:

There are many of us who are stage 4 in this forum and we will give you as much support and information as you need, but perhaps you could tell us a bit more about yourself, too? Where are your mets? What treatment have you been having?

If by 'people with mets are not thought of in the same way' you mean that the cancer is no longer curable, then this is probably right, but there are women on this board who have been in remission or NED for many years and my onc considers my illness as something he can control for many years, too.

Dreams can come true, you know!

Hugs,

Katie xx
Hope for the best, prepare for the worst! Dx 7/15/2006, ILC, 2cm, Stage IV, Grade 2, mets, ER+/PR+, HER2-
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Aug 5, 2007 08:34AM neva4 wrote:

Thanks for the responds.I am stg 4 breast ca and have been from the 1st diagnosis.I was getting treated for an infection fo the lg(Celleutitis) from a cat scratch which I had been going to the MD for over a month and it was not responding to tx.On one vist a blood test was drawn and came back with a hemoglobin of 4.3 and I was rushed to the hosp No one could believe I was not showing any symptoms from I was admitted and for 2wks given a battery of tests and they saw a sm lump almost hidden behind a muscle(did not show on the mammogram)seen on the cat scan.Had breast biopsy and bone marrow biopsy diagnosis stg 4 with met to bone and bone marrow packed w ca cells.Did chemo(Taxol) and 22 blood Transfusions (Stopped counting there) now on Ferama and go once a month for IV Aredia (Bones).I was asked to go to this support group meeting with some one I got friendly with at The Cancer Center (my 1st) At the meeting after introductions I was asked what I did to keep saneWell isaid bascially from having to take more time out for my self MY life was sitll som what on track Caring for my mom(81) working from home,have a really understanding boss.and my pet project decorating my front and back porch to have a relaxing place with lots fo plants and flowers.Well this women turns to me and says "why your going to die any way".Shocked yes to say the least,but I said calmly that were all going to die some day with or with ca tomorrow is not promised to us,and I thank God every day that he waks me.I wish I could say the meeting ended on a good tone It seems this women had over heard the person I came with tell ing some pne that I was stg 4 and she wanted them to see that I did not look or acy any different then they did.This person had always felt that people with stg4 ca were on ther death beds and always made her feel uncomfortable because thats were she never wanted to be .She says when she met me that her attitude changed because of my attitude and the way I looked.I told her yes I have good days and bad days but I"v learned to listen to my boby whenit says rest I do.There were a few of the ladies ther who felt the same and felt that I might feel better in a group for people with my type of ca.Do i feek slighted not in the least just glad to be albe to go on with my life.

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Aug 5, 2007 08:42AM neva4 wrote:

Sorry I did not do a better job of typing and all the errors but was rushing get this out before I had to leave for the airport,and some times it takes me so long to think of the words I want to use (Chemo brain) I get locked out of posting and have to start over.

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Aug 5, 2007 10:32AM katie11 wrote:

Neva4,

Thanks for taking the time to share your story. I can't believe what the woman in the 'support group' (ha ha) said to you - how rude and insensitive. It just goes to comfirm that other people really have very little understanding of stage 4 bc - even those suffering from bc themselves, it seems! Fortunately, you'll find lots of support here.

My onc has NEVER talked about me dying - he just says that this is something that he can control for many years. You can do that, too.

Katie xx
Hope for the best, prepare for the worst! Dx 7/15/2006, ILC, 2cm, Stage IV, Grade 2, mets, ER+/PR+, HER2-
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Aug 5, 2007 03:33PM metstobone1 wrote:

I am not sure I am doing this right. I have never done this before. My sister found this sight and suggested I look it over and I liked what I saw and read; therefore I thought I would try my hand at sharing.
I had breast cancer in 2003 and had a mastectomy of my right breast. I found out this March (2007) that I now have mets of the bone. I had a port put in which was kinked and had to be removed. I had a couple of blood clots form and was unable to put a port back in. Due to my husbands job we have moved to a different state where we know no one. I have weekly Doctor appointments and my husband is working long hours. I am mainly by myself most of the time. I would like to move back home with family and friends and my old doctors. However, at this point this is not an option. I had radiation treatments and am currently taking chemo in the pill form (Xeloda). I also have Zometa injections once every 3 weeks. I am on blood thinner due to the blood clots. I have days I feel fine and it is hard for me to believe I have stage IV breast cancer. Then there are days I am so tired I can barely function. I would like to hear from someone that has taken Xeloda and Zometa. Also, those that have mets of the bone. It is my understanding I will be taking Zometa and some type of chemo for the rest of my life.
I need someone to talk to. Thanks! Have a good day! :-)
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Aug 5, 2007 04:28PM LuAnnH wrote:

metstobone,

Glad you found us. I too have bone mets. I was cancer free for 8 years when these nasty mets resurfaced. Where do you live? You don't have your city in your profile. Maybe there are some metsters that live near you to help you out some. Glad to see you are doing well on your tx. You pretty much understand correctly as far as tx goes. Zometa is to help streghten your bones and the chemo will help fight off the cancer. You will find lots of support and friendship here. It is also a great place to find help get a warm fuzzy that the tx option you are on is on the right track. Welcome to the group that no one wants to belong.

LuAnn
LuAnn -- Dx 7/2/2006, IDC, 2cm, Stage IV, mets, ER+/PR+, HER2+
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Aug 5, 2007 05:16PM neva4 wrote:

Metstobone,

I too am new to this site and have mets of the bone.As you stated that's pretty much the way my tx will be going too I'm glad to have found this group and feel like I finally have some one to talk to.
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Aug 6, 2007 03:43AM mrsjck wrote:

Hello "Metstobone2" and "Neva4" and welcome to our group of metsters. Although we are saddened by the addition of another sister we care enough to offer whatever support we can. I had 7-1/2 years of NED and then a backache prompted an MRI which led to bone mets to spine, hips, pelvis, femurs, skull. Started out on Arimidex and then Faslodex and then Taxol. Had a port put in and got blood clot and was put on Warfarin for that and then Xeloda and continuing Zometa. Am doing very well...no side effects and tumor markers are going down. My Xeloda dose is only 2000 mgs a day to minimize side effects but it is working nonetheless. This past bone scan, as compared to one in March, showed "no isostonic evidence of disease"....so I told my doctor I believe in miracles...she doesn't and feels it's a poor read on bone scan...even though it was done by 2 different radiologists!!! Anyway, I have my days of being tired...have given up motorcycle riding and camping...now we take 3-4 trips a year by plane...to a nice hotel...to swim and relax and sightsee....I suppose in some ways it has altered my quality of life...but, hey, this first class style suits me just fine...all I did was give up vacuuming, raking leaves, shoveling snow...can't beat that!!! Come here often and let it all out...we all understand even if we are not identical in symptoms or diagnosis...we are right up there with you in emotions and thoughts and fears....

This too shall pass
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Aug 9, 2007 02:45PM metstobone1 wrote:

Thanks for your reply. I am currently living in Atlanta, Georgia and I have gone to one meeting at the Wellness Center for mets and I was the only one that showed up. I have not been back. Thanks again for replying.

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Aug 9, 2007 02:47PM metstobone1 wrote:

Thanks for replying. I hope all is going well with you.

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Aug 9, 2007 02:50PM metstobone1 wrote:

Thanks for your support. It is good hearing from someone who has experienced the same or near the same diagnosis as myself. It gives me encouragement to hear someone being so positive. Thanks again for your reply.

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Aug 9, 2007 03:57PM CalGal wrote:

I think I'm one of the "lucky few" in that I have a mets support group. Actually, it is for "recurr cancer and/or mets", but all of the regulars have mets. It's great to be part of this group, where everyone really understands. Although it is open to all types of cancer, 95% of the women who attend have bc mets.

The odd and sad thing about the way things have worked out is that we're all younger ... all but two of the regulars are in their 30s and 40s, except for one in early 60s and one who just celebrated her 30th b'day two yrs after mets dx. That's pretty young for mets ...

The regulars are pretty positive and pro-active. We all can really understand ... Usually, there are 4-6 women in attendance, but there's been as many as 9 and as few as just me (only once). A number of us have become friends outside of the group too.

All of my new friends either have bc, another cancer or the BRCA mutation and have done prophylactic surgery! At least with the former, most aren't working ... and so now I have friends to go to lunch with or see during the day when all my other (healthy) friends are working!

Last fall, I went to the Metastatic Breast Cancer Network conf in NY (this Nov it will be at MD Anderson in Tx). The women who started it did so since they were basically asked to leave their bc support group when they got mets and "scared" the other women ... Geez ...

Neva4 - That support group was not supportive! I hope you can either find one that you like better ... or talk with the leader of that group to get support for more empathetic behavior from the group ... As you put it, living in a "dream world" for 1.5 yrs ... maybe not such a bad thing, but certainly sounds like a rude awakening ... (what did your onc tell you at the time?)

Metstobone2 - Being in a new place, with new docs and w/o friends or family nearby has to be really tough ... Are there any cancer centers nearby? Have you checked for a support group?

I tried a couple of groups before I found one that I really clicked with. Particularly for a "drop-in" group vs a "committed attendance" group, the vibe can be VERY DIFFERENT depending on who shows up and what they're dealing with ... You might want to give it a couple tries ...

CalGal
Trip Neg, BRCA1, Mets dx 12/05 despite 2 cm tumor & clear nodes at orig dx 9/04.. Liver, lung & one bone met.
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Aug 10, 2007 06:45AM jacqniel wrote:

Neva - I just had the same thing you spoke about happen - I timed out! Oh well...
I find those who fear mets patients are suffering from ostrich syndrome. They seem to think if they don't know any mets survivors then they won't get it. Interesting.

Metstobone - Hello and greetings from another mets survivor. It must be hard to not have any family or friends nearby. Calgal gave some good advice - keep looking for a group where you freel comfortable. Perhaps you could do some research and start your own group!
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Aug 10, 2007 07:25AM - edited Mar 19, 2008 11:46AM by TenderIsOurMight

Hello All,

To ostracize: To exclude from a group.

I wish to de-ostrichcize as well as de-ostracize. I wish to get my head out of that sand, and deal with my own fears of mets. I wish to get to know you ladies, become friends, and work to accept in my mind that breast cancer is a chronic disease and that I am already in that chronic state regardless of what I officially am staged. I follow your posts, and appreciate your wisdom, candor and strength. So... please know I, and undoubtedly others here, are working to de-ostrichcize and de-ostracize.

Peace,
Tender
It cannot be emphasized too strongly that treatment of each patient is a highly individualized matter. (FDA-approved labeling for warfarin (Coumadin) NDA 9-218/5-105)
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Aug 10, 2007 07:37PM JoyRebecca wrote:

I too am new here. Went to the MD for a backache and ended up with dx breast ca mets to vertebrae. It's been 3 mos now and I've completed rad, take tamoxefen daily and get Zometa every 4wks. I'm due for a repeat pet scan next week to see if the tx is working. I feel like I'm coming to a fork in the road. This is still so overwhelming to me.

Dx 5/5/2007, Stage IV, mets, ER+/PR+, HER2-
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Aug 10, 2007 08:03PM Sherryg683 wrote:

I think that's pretty much why I stick to these boards. Women with mets, scare the ones that are early stages. One of the ladies that I do chemo with is also stage IV. She went to one of the local suport groups and when they found out she was a stage IV, they felt very uncomfortable around her. We are a reminder of what can happen to them. I have been NED now for 18 months with lung mets and fell pretty good, except for lasting shingle pains. I don't think I would do well with one of those support group anyways. I would probably get irritated over hearing them whine over things that I consider small. ..sherryg683

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Aug 10, 2007 08:28PM DragonGirl wrote:

Dear JoyRebecca:

My diagnosis story is essentially the same as yours, went to the doc for back pain and found out I had stage IV mets to spine. I know how frightened you are, and how confused you still feel after 3 months. To be honest, it takes a good year to really get your feet back underneath you in any way, so just hang on tight and keep coming to the board for support. Also, seeking out a therapist with a background in working with cancer patients is a great idea. Ask at your treatment center if they know of anyone.

It's true that it is very hard to find support if you have mets, as many support groups lump us in with everything from "worried about it" to stage III. I struggled for a long time to find a mets group to talk to and only recently found this one. It makes a world of difference. I know you are frightened about your upcoming tests. I can say that believe it or not, you get better at dealing with them as time goes on. This test may tell you that your treatment is working. I will be praying for that. Also, remember that if whatever treatment you are on is not working, there are many, many others out there, so don't flip out if that happens. I was first put on tamoxifen but knew even before my first 3 month PET that it wasn't working due to the increased pain in my back, despite the radiation. I went right to chemo because the cancer was enveloping my spine too quickly. I was put on taxol/carboplatin. I decided to get myself into Sloan Kettering for a second opinion and they suggested Taxol/Avastin, which was the newest thing out there for advanced stage bc and was thought to be especially effective for women who had not had substantial chemo yet. I decided to go with it and after about eight months of that with Zometa I found myself being told i had no active cancer. I've been on Femara ever since (13 months) and remain in remission. Sooo...don't forget that everyone's cancer is different and the trick is for you and your doctor to find the right treatment for you to get your cancer stable. Tamoxifen is the most common first step. There ae other hormone tx out there too that can be tried before chemo. I only jumped to chemo because my spinal integrity was in jeopardy.

The first treatment you try may work, or it may not. Yes you are approaching a fork in the road but it isn't one that will determine with finality anything, other than whether or not your current treatment is right for you. Try not to give the cancer any more power than it really has, OK? Chemo is not so scary as it is cracked up to be, especially for us stage IVs who are usually given less toxic doses that some of the earlier stagers, to preserve our quality of life. If you have to go there at some point, let us help demystify it for you a bit, OK? Don't listen to those people out there with those "my aunt had cancer and such and such horrible thing happened to her" and so on. Get it from the horses mouths (sorry ladies, no offense intended).

Of course this is still overwhelming to you! Don't judge yourself on that. It will be, for a while. Later, you will have periods between those overwhelming days and things won't be so hard, all the time.

You've come to the right place for support and information. There's so much to learn, not only about cancer but about how to live, get money if you can't work, see your world in a different way and so on. You'll find all the answers, or leads to answers, through here. I know it's hard to believe right now but you will also receive many gifts through the journey you are embarking on, and I don't mean a brand new washer and dryer. There are so many blessings that come along with this diagnosis.

You're in good shape. I didn't find this website for at least 6 months. It took me 2 years to realize they had discussion boards and chat rooms!

Hang in there and feel free to email me if you like for any questions. I have a lot of experience with bone mets to the spine, pain control and so on. You are not alone in this. We all look out for eachother.

Keep us posted on your test results!

Snooch
Dx 6/30/2005, IDC, 5cm, Stage IV, Grade 3, mets, ER+/PR+, HER2-
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Aug 11, 2007 08:40AM Dollyd wrote:

Hi neva4,
Welcome. I like your style tyo errors and no time to correct them because your flying to the airport. Did you go somewhere nice? Keep well away from anyone who questions how you are coping. Best wishes
dolly
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Aug 11, 2007 08:57AM JenBen25 wrote:

I usually read the posts, but rarely post...I guess I am in my own little world with all of this, but lately, I am feeling the need for more support. I have mets to the bones (spine, neck, ribs, pelvis, and upper right arm), liver, and a lymph node in my chest cavity (which is gone now - yay!!), my last scan showed that the bones and liver were stable, and I was hoping for some sort of shrinkage. It has really burst my bubble. Especially when the onc. said we could just treat it as a chronic condition.

What does that mean?? Chronic condition - I stay on chemo for as long as it's there and just monitor it? I can't do this taxotere forever. It is really whiping me out. I just don't understand how they treat it as a chronic condition?

We are going to try an antibody that stops the growth of new cells on the liver on Tuesday, but I can't remember the name!! Damn chemo brain!! So I am glad that he is still trying new drugs on me. I am not ready to give up and accept this as my future.
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Aug 11, 2007 11:17AM katie11 wrote:

Hi Jen,

Me again! You may not have to do taxotere forever. After I had done taxotere in combination with xeloda for 7 months and my mets were considered to be stable, I stopped chemo and didn't do any treatment for 5 months (admittedly it wasn't much of a break as I had the mastectomy during this time!). However, during the whole 5 months my mets just stayed stable, so there is hope for a break!

Keep at it!

Katie xx
Hope for the best, prepare for the worst! Dx 7/15/2006, ILC, 2cm, Stage IV, Grade 2, mets, ER+/PR+, HER2-
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Aug 11, 2007 11:26AM LuAnnH wrote:

depending on your hormone & her2 status will determine if you will get total tx breaks or maintenance type meds. At least I consider hormonals & herceptin maintanance meds. There are quite a few women that have take total chemo breaks and done fine. I know of one woman who had alot of mets and has been chemo free for 18 months and counting now. Just depends on how you respond.

I guess they like the word chronic condition because this disease is not the death sentence it would have been in years prior. There is alot of tx options available now and newer ones in the making so hopefully we will all be here 20 & 30 years from now showing men and women that you can now live with this illness.

LuAnn
LuAnn -- Dx 7/2/2006, IDC, 2cm, Stage IV, mets, ER+/PR+, HER2+
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Aug 11, 2007 02:13PM WendyV wrote:

Jen,
I know that you want so much more than just stable, but keep in mind that stable is good. Stable means that the tumors you do have didn't grow and no new ones showed up so that is great. Think of your cancer as a fast moving train. In order to back up it first has to slow down, stop and then start to slowly back up! So to me it looks like, the train has come to a complete stop and with the disappearing lymph node it looks like you are ready to start backing up!!!! Good luck Jen, and keep us posted on your new treatments!!
Wendy
Life isn't about waiting for the storm to pass, it's about learning to dance in the rain.( bone,liver,brain,lung mets) Dx 10/9/2006, IDC, 4cm, Stage IV, Grade 3, mets, ER+/PR+, HER2+
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Aug 11, 2007 05:21PM JenBen25 wrote:

Thank-you for all of the kind words of encouragement! I think that is exactly what I've been needing to hear! I knew this was the right place to come for the positive energy that I need right now!

Thank-you, you guys - you rock!
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Aug 13, 2007 06:31PM neva4 wrote:

Thank you all for your reply.Yes Dolly I was off to the airport to New York for a friend of 32 years 60th birthday party,had a ball came home and slept the whole weekend,it was worth it. I try and keep busy and stay away from support meetings for now glad I found this site.My onc says that I am stable and to keep on doing what ever I want ,but just listen to your body when you feel the need to rest do it or your body will do it for you.As she said when I first met her "give me a year of your life and I will work my hardest giving you many more to go."I work 3 days a week and some at home.I use to do sleep studies but could not go back to that to much up and down and on my feet.So being lucky enough to have a great boss who offered to let me do sleep study scoring at home and up dating pts charts in the office.Where since it is a sleep lab I have the pleasure of lying down during breaks or reclining in the recliner she had put in a room for me if I needed to take a break.So I say to all those out there that think I'm a hex to be around them then let me be a hex.Love this board.

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