Stage IV with mets, are you in the boat with me??
My story: single mastectomy, ER/PR-, HER 2+ in late 2005. Now in 2010, new lump near implant, plan for lumpectomy, radiation, and chemo. PET scan says, Hahahahaha, cancer has already spread to 2 spots in your bones: right hip and a vertebra. Once it spreads, they say it is not curable but that it can be contained for "years". So far, no spread to any of my organs, thankfully. I am a little more serious this time around. That cruise ship is looking a hell of a lot better than my little rowboat.
So again, I ask: who is in that rowboat with me, pulling on those same oars with that Stage IV diagnosis? I love all the support but it is still a little lonely until you find the ones in the same boat as you are.
Comments
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I am! I am! I am! I also
I am! I am! I am! I also am stage 4, origianaly diagnosed July 7, 2008. You can click on my picture to read my story so i do not have to bore anyone again! I feel the same way you do, believe me. I was in remission until June 3rd, when the cruise ship stopped and threw me over with a rowbot. I have been floating ever since. I am 54 years old, and the remission has come in a large tumor in my liver, cancer in one of the bones in my spine, and many swollen lymph nodes. This was undetected even though i had complained to my doctor for 4 months. And these were present on my original diagnosis but were supposed to be stable. I am back in chemotherapy once every week for 3 weeks, 1 week off for 6 months, then ?????, no one knows, and that is the scary part. But, yes it can be contained for many years since it has not spread to any of your organs. I was getting Zometa monthly for the bone mets. But right now, I am getting Tazol, Herceptin, and Zometa. I am on disability, and everyday most of worrying goes to financial things. I am thinking that i can go back to work, i do not want to lose my job, blah blah blah. I understand what you are saying about being lonely. I have a great hubby, kids, and sisters, nieces, cousins, friends who love me, but i cannot discuss this with them, they always say "you'll be fine". they do not understand anything. I also have a few women i met in chemo that are stage 1,2 and they tell me there is nothing to worry about. This is getting long, so i will post again later0 -
It could happen to any of us!meena1 said:I am! I am! I am! I also
I am! I am! I am! I also am stage 4, origianaly diagnosed July 7, 2008. You can click on my picture to read my story so i do not have to bore anyone again! I feel the same way you do, believe me. I was in remission until June 3rd, when the cruise ship stopped and threw me over with a rowbot. I have been floating ever since. I am 54 years old, and the remission has come in a large tumor in my liver, cancer in one of the bones in my spine, and many swollen lymph nodes. This was undetected even though i had complained to my doctor for 4 months. And these were present on my original diagnosis but were supposed to be stable. I am back in chemotherapy once every week for 3 weeks, 1 week off for 6 months, then ?????, no one knows, and that is the scary part. But, yes it can be contained for many years since it has not spread to any of your organs. I was getting Zometa monthly for the bone mets. But right now, I am getting Tazol, Herceptin, and Zometa. I am on disability, and everyday most of worrying goes to financial things. I am thinking that i can go back to work, i do not want to lose my job, blah blah blah. I understand what you are saying about being lonely. I have a great hubby, kids, and sisters, nieces, cousins, friends who love me, but i cannot discuss this with them, they always say "you'll be fine". they do not understand anything. I also have a few women i met in chemo that are stage 1,2 and they tell me there is nothing to worry about. This is getting long, so i will post again later
Hi Ladies,
I am not currently labeled Stage IV but as I said above who know what the future has in store. I am in a support group with several women who carry the Stage IV label. They are all doing fine. One has been fine for over 7 years so far. They are coming out with new treatments all the time so hang in there. You may want to check out breastcancer.org. They have a specific thread for Stage IV which you may find helpful. I hate that label! We are all alive today and that's important. Since my diagnosis, I know how precious life is and try to live it fully each day. Hugs!
Roseann0 -
The boat may get crowded
Welcome aboard. You are not alone, there are quite a few of us. I have mets to bone with clear organs also. So far I feel fine, maybe even better than before the DX, because now I'm taking much better care of myself. Nevertheless, we have a chronic disease but one that can be managed. Fortunately for me, I have no heart disease, diabetes, high blood pressure, breathing problems or any other conditions that might interfere with treatment. Support from family and friends is important to me, especially the "extended family" I've found here. God Bless you. Gracie
By the way, I also dislike the Stage IV label, but it beats the heck out of saying "terminal"...what a downer that is...takes away all hope!!! Roseann is so right, new treatments come along that extend not only life, but the quality of it.0 -
Me too
I also had a spot on my right hip and I'm on Zometa for a year. I feel fine, some stiffness in hip sometimes. I'm not worried about it. After chemo, the spot was gone. I don't think the Oncologist is really certain what it was, but is treating it as a met. Try not to worry.0 -
laurissa said:
Me too
I also had a spot on my right hip and I'm on Zometa for a year. I feel fine, some stiffness in hip sometimes. I'm not worried about it. After chemo, the spot was gone. I don't think the Oncologist is really certain what it was, but is treating it as a met. Try not to worry.
I am so sorry to read this about you! But, you can fight this and you can win!
There are so many on here that have had a recurrence, some 2 and 3 times. RE, meena, Jeanne D and others, and, they are living full, healthy and happy lives now!
So, you just focus on fighting the beast again and know that we are all here supporting you through everything!
Sue
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thanks for letting me know if you are in the same boat!
I am not totally depressed about it right now(a couple of weeks ago, however...) but it is a different perspective than the first time around. Looking on the boards, I see lots of people going through it the first time with a stage 1 or 2 and I wanted to know a few more people that have closer experiences to me this time around. It's hard to hunt through all of the postings, blogs, and expressions, to find those few of us that are dealing with it spreading elsewhere in the body that are still active on the boards as well. Looking through the member directory, I found a couple people but then noticed that they had not been active on the boards since a year or two ago. I thought if I started this thread, it would help cut down the hunt time.
I think I will be getting Xeloda, Zometa, and Herceptin starting next week. Checking a second opinion on Monday and then go from there.
Thanks for responding!!0 -
You can PM me at anytime, oriowasignterp said:thanks for letting me know if you are in the same boat!
I am not totally depressed about it right now(a couple of weeks ago, however...) but it is a different perspective than the first time around. Looking on the boards, I see lots of people going through it the first time with a stage 1 or 2 and I wanted to know a few more people that have closer experiences to me this time around. It's hard to hunt through all of the postings, blogs, and expressions, to find those few of us that are dealing with it spreading elsewhere in the body that are still active on the boards as well. Looking through the member directory, I found a couple people but then noticed that they had not been active on the boards since a year or two ago. I thought if I started this thread, it would help cut down the hunt time.
I think I will be getting Xeloda, Zometa, and Herceptin starting next week. Checking a second opinion on Monday and then go from there.
Thanks for responding!!
You can PM me at anytime, or start a new post. I was going to see if we could set up a new section for stage 4 breast cancer, but there does not seem to be enough of us to do that. I usually scoot through the other bulletin boards for info, but i hate to chime in, I am going for a second opinion on Aug 24, my oncologist is just not working out for me. I am always around her, i check every day. I do know that i will be in treatment for the rest of my life, no ifs or buts about it. Just to let you know that if you are stage 4 you qualify for social security disability, there is a 5 month waiting period until payments begin, i have the phone # to call if you need it. I have qualified for the benefits, very easy. I also get depressed about this, but i do feel ok, trying to do the same things i did before. Remember that we all care about you here, let me know your treatment plan.0 -
Disability
Meena 1, for future reference, how do I apply for disabilty if I ever need it? Are you not allowed to work those 5 months prior? Right now, I'm strong and able to work with just some stiffness in hip. My job is a driving job, nothing really strenuous. How hard is it to be approved?0 -
It is always dishearteningmeena1 said:You can PM me at anytime, or
You can PM me at anytime, or start a new post. I was going to see if we could set up a new section for stage 4 breast cancer, but there does not seem to be enough of us to do that. I usually scoot through the other bulletin boards for info, but i hate to chime in, I am going for a second opinion on Aug 24, my oncologist is just not working out for me. I am always around her, i check every day. I do know that i will be in treatment for the rest of my life, no ifs or buts about it. Just to let you know that if you are stage 4 you qualify for social security disability, there is a 5 month waiting period until payments begin, i have the phone # to call if you need it. I have qualified for the benefits, very easy. I also get depressed about this, but i do feel ok, trying to do the same things i did before. Remember that we all care about you here, let me know your treatment plan.
It is always disheartening to read of someone getting cancer again. I am so sorry. I pray that your treatment will work for you!
Hugs, Jan0 -
oopsiowasignterp said:thanks for letting me know if you are in the same boat!
I am not totally depressed about it right now(a couple of weeks ago, however...) but it is a different perspective than the first time around. Looking on the boards, I see lots of people going through it the first time with a stage 1 or 2 and I wanted to know a few more people that have closer experiences to me this time around. It's hard to hunt through all of the postings, blogs, and expressions, to find those few of us that are dealing with it spreading elsewhere in the body that are still active on the boards as well. Looking through the member directory, I found a couple people but then noticed that they had not been active on the boards since a year or two ago. I thought if I started this thread, it would help cut down the hunt time.
I think I will be getting Xeloda, Zometa, and Herceptin starting next week. Checking a second opinion on Monday and then go from there.
Thanks for responding!!
double post0 -
If you are stage 4 not hardlaurissa said:Disability
Meena 1, for future reference, how do I apply for disabilty if I ever need it? Are you not allowed to work those 5 months prior? Right now, I'm strong and able to work with just some stiffness in hip. My job is a driving job, nothing really strenuous. How hard is it to be approved?
If you are stage 4 not hard at all, but you do have to be on disability from work, so you would not be able to work those 5 months prior. Of course, your doctor has to agree that you are unable to work. The phone # is 1-800-633-4227. They were very knowlegable and helpful. Of course, i am in chemo for 6 months, maybe longer so that may be why i did not have any problem. But it is always there if you need it.0 -
I am not Stage IV either,roseann4 said:It could happen to any of us!
Hi Ladies,
I am not currently labeled Stage IV but as I said above who know what the future has in store. I am in a support group with several women who carry the Stage IV label. They are all doing fine. One has been fine for over 7 years so far. They are coming out with new treatments all the time so hang in there. You may want to check out breastcancer.org. They have a specific thread for Stage IV which you may find helpful. I hate that label! We are all alive today and that's important. Since my diagnosis, I know how precious life is and try to live it fully each day. Hugs!
Roseann
I am not Stage IV either, but, wanted to welcome you and to wish you good luck!
♥ Noel0 -
Add me to your list
Hello Iowa, in 97 I was stage 2 did 6 rounds chemo, 6 weeks rads and had a lumpectomy, fast forward 6 months later it returned in my sentinel node and chest wall. I then had 18 more rounds chemo and ten more weeks rads and was totally exhausted by the time that was all done with. I remained cancer free till 2007 when it showed up in the other breast a new cancer not a recurrent so I am still in remission from the stage 4 cancer some 13 years from when it all started. The 07 cancer required 4 chemos and I had a mastectomy this time. I am fine for the time being and enjoy life a lot, I have 3 grand kids who run me ragged and I love to go on weekend jaunts with my hubby so please know there is hope. I keep a watchful eye on myself and I sound the alarm whenever something seems off. Hope this has helped.
♡ RE ♡0 -
Just wanted to add that, IRE said:Add me to your list
Hello Iowa, in 97 I was stage 2 did 6 rounds chemo, 6 weeks rads and had a lumpectomy, fast forward 6 months later it returned in my sentinel node and chest wall. I then had 18 more rounds chemo and ten more weeks rads and was totally exhausted by the time that was all done with. I remained cancer free till 2007 when it showed up in the other breast a new cancer not a recurrent so I am still in remission from the stage 4 cancer some 13 years from when it all started. The 07 cancer required 4 chemos and I had a mastectomy this time. I am fine for the time being and enjoy life a lot, I have 3 grand kids who run me ragged and I love to go on weekend jaunts with my hubby so please know there is hope. I keep a watchful eye on myself and I sound the alarm whenever something seems off. Hope this has helped.
♡ RE ♡
Just wanted to add that, I think, the site breastcancer.org has a separate discussion thread for Stage IV. They have thousands of different threads there for bc survivors.
Hugs, Jan0 -
Sending you prayers and goodm_azingrace said:The boat may get crowded
Welcome aboard. You are not alone, there are quite a few of us. I have mets to bone with clear organs also. So far I feel fine, maybe even better than before the DX, because now I'm taking much better care of myself. Nevertheless, we have a chronic disease but one that can be managed. Fortunately for me, I have no heart disease, diabetes, high blood pressure, breathing problems or any other conditions that might interfere with treatment. Support from family and friends is important to me, especially the "extended family" I've found here. God Bless you. Gracie
By the way, I also dislike the Stage IV label, but it beats the heck out of saying "terminal"...what a downer that is...takes away all hope!!! Roseann is so right, new treatments come along that extend not only life, but the quality of it.
Sending you prayers and good wishes!
Hugs, Megan0 -
Scoot over!survivorbc09 said:Just wanted to add that, I
Just wanted to add that, I think, the site breastcancer.org has a separate discussion thread for Stage IV. They have thousands of different threads there for bc survivors.
Hugs, Jan
Iowa, you and I have a lot in common so scoot over a little in that rowboat. In February this year I was diagnosed with breast cancer (not a recurrence), it was already Stage IV with mets to many lymph nodes, my liver, bones, and skin. Not only that, like you I am ER-PR- and HER2+. So...I've been the route of Taxol, Zometa, and Herceptin.
First, let me give you some encouragement by telling you that I am having good results from my treatments. I was not a candidate for surgery because of all the involvement, so I know I cannot ever have the cancer "cut out". I too will never be cured but am in hopes of "managing" the cancer for a long time. When you face this disease from this perspective, you realize how insignificant things like hair loss and some of the side effects are. Yes I lost my hair for a couple of months, but it is now coming back, about half an inch long. I'd stay bald forever if it meant beating this!
Several times it has been suggested that I go to breastcancer.org or bcmets. I have done that but they are often very negative and I prefer to be optimistic and hopeful so I continue to read and post here. I also like nationalbreastcancerfoundation. No matter where you go, I do think it sometimes makes others uncomfortable - perhaps they are frightened or just don't know what to say.
Certainly, I don't mind talking about my cancer but I do enjoy some of the more light-hearted topics and I really enjoy being able to laugh, so I keep coming back.
Due to advancements in medicine many thousands of people will beat this, and that makes me very happy. But I don't want them to ever forget that we're still out here, THE FIGHT'S NOT OVER.
From now on, let's call it a LIFEBOAT, not a rowboat.
God bless us all. MM0 -
There is always hope, alwaysmeena1 said:If you are stage 4 not hard
If you are stage 4 not hard at all, but you do have to be on disability from work, so you would not be able to work those 5 months prior. Of course, your doctor has to agree that you are unable to work. The phone # is 1-800-633-4227. They were very knowlegable and helpful. Of course, i am in chemo for 6 months, maybe longer so that may be why i did not have any problem. But it is always there if you need it.
There is always hope, always new treatments for all cancers at any stage.
Try to stay positive and fight!
Hugs!0 -
hi ....same passenger here in houston texas
I thought md anderson is the best place for me but unluckily chemo gave up on me. been diagnosed in june 2008 stage 3 and recurrence in january 2010 with stage iv, no hope for radiation, no hope for surgery and no hope to cure. I don't know what else they can give me. I will have appt. to my research doctor this end of this august. My tumor is growing and from my last ultrasound the it hasn't spread yet. but it hurts and sad what would happen next.
We keep fighting and believing in God.
take care.0 -
glad to know a fellow "life"boaterMarsha Mulvey said:Scoot over!
Iowa, you and I have a lot in common so scoot over a little in that rowboat. In February this year I was diagnosed with breast cancer (not a recurrence), it was already Stage IV with mets to many lymph nodes, my liver, bones, and skin. Not only that, like you I am ER-PR- and HER2+. So...I've been the route of Taxol, Zometa, and Herceptin.
First, let me give you some encouragement by telling you that I am having good results from my treatments. I was not a candidate for surgery because of all the involvement, so I know I cannot ever have the cancer "cut out". I too will never be cured but am in hopes of "managing" the cancer for a long time. When you face this disease from this perspective, you realize how insignificant things like hair loss and some of the side effects are. Yes I lost my hair for a couple of months, but it is now coming back, about half an inch long. I'd stay bald forever if it meant beating this!
Several times it has been suggested that I go to breastcancer.org or bcmets. I have done that but they are often very negative and I prefer to be optimistic and hopeful so I continue to read and post here. I also like nationalbreastcancerfoundation. No matter where you go, I do think it sometimes makes others uncomfortable - perhaps they are frightened or just don't know what to say.
Certainly, I don't mind talking about my cancer but I do enjoy some of the more light-hearted topics and I really enjoy being able to laugh, so I keep coming back.
Due to advancements in medicine many thousands of people will beat this, and that makes me very happy. But I don't want them to ever forget that we're still out here, THE FIGHT'S NOT OVER.
From now on, let's call it a LIFEBOAT, not a rowboat.
God bless us all. MM
Thanks for the insights regarding the other more negative sites. I really and truly don't want to wallow in the negative, I just can't do it too long. Life has not been very fair but there is still hope and humor. It is a fine line between being totally ignorant of what is going on and wallowing in every single detail. I want to know what to expect from treatment, what are my odds (even if they are not good), and learning how to make the best out of the life I got. This does not mean I don't wish that I had a warranty on this defective body so I could trade it in for some cute 20 year old's body with perfectly perky boobs and flat stomach. Hubby says I should make it a redhead while I am at it, grin. And if the exchange does not include dying first, please.
You are right about people not feeling completely comfortable with my diagnosis, even those on the "cruise ship". I also agree with you about being more optimistic and hopeful. I need to be able to laugh too. I also know that it is more fun to laugh in this cancer journey if you got others who share those same experiences.
I am so happy I started this thread, I am not quite as alone as I was beginning to think.
Still rowing away!0 -
You don't need to row youriowasignterp said:glad to know a fellow "life"boater
Thanks for the insights regarding the other more negative sites. I really and truly don't want to wallow in the negative, I just can't do it too long. Life has not been very fair but there is still hope and humor. It is a fine line between being totally ignorant of what is going on and wallowing in every single detail. I want to know what to expect from treatment, what are my odds (even if they are not good), and learning how to make the best out of the life I got. This does not mean I don't wish that I had a warranty on this defective body so I could trade it in for some cute 20 year old's body with perfectly perky boobs and flat stomach. Hubby says I should make it a redhead while I am at it, grin. And if the exchange does not include dying first, please.
You are right about people not feeling completely comfortable with my diagnosis, even those on the "cruise ship". I also agree with you about being more optimistic and hopeful. I need to be able to laugh too. I also know that it is more fun to laugh in this cancer journey if you got others who share those same experiences.
I am so happy I started this thread, I am not quite as alone as I was beginning to think.
Still rowing away!
You don't need to row your boat alone. You have all of us!
Praying for you,
Diane0
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