indefinite treatment?
So, I've been in treatment for one month now. I'm doing taxol and herceptin as well as a trial study. Today I spoke with one of the nurses and asked, "So, how many treatments will I have?" I am trying to plan some trips as well as my work schedule and thought this would be important information. I expected an answer like 6 months or maybe 12 treatments or something. No. The nurse said that I will be getting this treatment "indefinitely." INDEFINITELY?
What in the world does that mean? They don't expect me to stop needing it? Has anyone else heard about this type of treatment? I'm not even sure I believe in this. ?!?!
Does this have something to do with the study drug? Am I just an experiment?
Comments
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First of all, 2nd time
First of all, 2nd time around at 36, I'm so sorry. Did you have chemo and rads first time, lumpectomy or mastectomy? Just curious.
As far as their answer on Indefinite, I've never heard of that but it sounds like they don't want to give you hope of a definate end of treatment until they see how you respond.
I know my chemo had an end date, but my Rad Dr. would never say for sure. She would say things like, "Well lets hope you'll be done before Christmas" etc.
If you can, just be direct because you do have a right to know it's your body.
Hope this helps.
Wanda0 -
I am sorry owly. SomeoneLighthouse_7 said:First of all, 2nd time
First of all, 2nd time around at 36, I'm so sorry. Did you have chemo and rads first time, lumpectomy or mastectomy? Just curious.
As far as their answer on Indefinite, I've never heard of that but it sounds like they don't want to give you hope of a definate end of treatment until they see how you respond.
I know my chemo had an end date, but my Rad Dr. would never say for sure. She would say things like, "Well lets hope you'll be done before Christmas" etc.
If you can, just be direct because you do have a right to know it's your body.
Hope this helps.
Wanda
I am sorry owly. Someone having a recurrence is devastating. We have had 3 that posted last week of recurrence's.
What treatments did you have the first time?
I don't understand that there wouldn't be an end to your chemo. Maybe, the nurse just didn't know.
Sending prayers and hugs to you!
Leeza0 -
We are all here for youjnl said:I am sorry owly. Someone
I am sorry owly. Someone having a recurrence is devastating. We have had 3 that posted last week of recurrence's.
What treatments did you have the first time?
I don't understand that there wouldn't be an end to your chemo. Maybe, the nurse just didn't know.
Sending prayers and hugs to you!
Leeza
Dear Owly,
I am so sorry to hear of a recurrence and I suggest you speak to your oncologist to get the bottom line on your treatment plan. No one else can really answer that. If he also tells you it is indefinite then of course you will ask him why and explain to you what exactly is going on inside your body and what your prognosis is. I will be praying for you that all goes well when you speak to him. When are you meeting with him again? Please hold onto God and know that He is with you to lean on and carry you through this and we are also all here for you to support and encourage you as well. Hang in there and keep your head up and above all...keep living your life....that is God's will. God bless you!
Lorrie0 -
I had a mastectomy, chemoBalentine said:We are all here for you
Dear Owly,
I am so sorry to hear of a recurrence and I suggest you speak to your oncologist to get the bottom line on your treatment plan. No one else can really answer that. If he also tells you it is indefinite then of course you will ask him why and explain to you what exactly is going on inside your body and what your prognosis is. I will be praying for you that all goes well when you speak to him. When are you meeting with him again? Please hold onto God and know that He is with you to lean on and carry you through this and we are also all here for you to support and encourage you as well. Hang in there and keep your head up and above all...keep living your life....that is God's will. God bless you!
Lorrie
I had a mastectomy, chemo and radiation last time. Then I took tamoxifen for 2 years. I guess I should have taken it for a longer time. I was married and thought I wanted to have a baby.
I am trying to just live my life, be happy and stay healthy. I am going to talk to my doctor on Tuesday and I really think that nurse was wrong.
I am reading that I could go into remission for YEARS and be ok.
I just am really nervous about living my life feeling sick and yucky and bald and all that.
And my boyfriend sort of broke up with me today. I think he's scared of what's happening. I know I am.
I am just sad. I just want to be a normal girl. I want to stay pretty and have fun. Nobody seems to understand what I'm going through. I want to cry all the time, but I try to be really good and not let it show. I try so hard to be tough.
I can accept that I'll probably never have children and I can accept that I have to be at the doctor a lot, but I do not want to accept being stuck in treatment every SINGLE week for the REST of my life.
Thank you guys for your encouraging words. You have no idea how much that helped me.0 -
Having bc puts our emotionsowly said:I had a mastectomy, chemo
I had a mastectomy, chemo and radiation last time. Then I took tamoxifen for 2 years. I guess I should have taken it for a longer time. I was married and thought I wanted to have a baby.
I am trying to just live my life, be happy and stay healthy. I am going to talk to my doctor on Tuesday and I really think that nurse was wrong.
I am reading that I could go into remission for YEARS and be ok.
I just am really nervous about living my life feeling sick and yucky and bald and all that.
And my boyfriend sort of broke up with me today. I think he's scared of what's happening. I know I am.
I am just sad. I just want to be a normal girl. I want to stay pretty and have fun. Nobody seems to understand what I'm going through. I want to cry all the time, but I try to be really good and not let it show. I try so hard to be tough.
I can accept that I'll probably never have children and I can accept that I have to be at the doctor a lot, but I do not want to accept being stuck in treatment every SINGLE week for the REST of my life.
Thank you guys for your encouraging words. You have no idea how much that helped me.
Having bc puts our emotions thru the wringer. I am so sorry that you have so much to deal with.
Please come here and vent or just type your feelings whenever you feel the need.
Someone is always on and will try and help you thru it.
Take care of yourself!
Hugs, Diane0 -
Dear owly,
I'm so sorry
Dear owly,
I'm so sorry you're having to deal with this ... and on top of all that, now your boyfriend. A guy at church told me last year 'cancer sucks' and indeed it does. Know that you're in my prayers.
With recurrence in your bones and liver they're going to throw everything they can at you to slow the progression. You're going to be monitored closely and having scans periodically so they can see if those particular chemo drugs are having an effect. If not, they'll change it up. They probably don't know right now because they are waiting to see if the taxol and herceptin are working.
Talk to your doc. If you need a break, tell them and then you can plan a window to get away. Talk to and rely on your support system. You need it more than ever. This board is here for you too - to listen, to cry with, to hold your hand and be there at any time of the day or night. Hang in there. Keep us posted. We're here.
Hugs,
dh0 -
Hi owly! I bet Dawn isDawne.Hope said:Dear owly,
I'm so sorry
Dear owly,
I'm so sorry you're having to deal with this ... and on top of all that, now your boyfriend. A guy at church told me last year 'cancer sucks' and indeed it does. Know that you're in my prayers.
With recurrence in your bones and liver they're going to throw everything they can at you to slow the progression. You're going to be monitored closely and having scans periodically so they can see if those particular chemo drugs are having an effect. If not, they'll change it up. They probably don't know right now because they are waiting to see if the taxol and herceptin are working.
Talk to your doc. If you need a break, tell them and then you can plan a window to get away. Talk to and rely on your support system. You need it more than ever. This board is here for you too - to listen, to cry with, to hold your hand and be there at any time of the day or night. Hang in there. Keep us posted. We're here.
Hugs,
dh
Hi owly! I bet Dawn is right, they just need to find out what chemo will work for you. And, if you do need some time away from it, express this to your doctors.
So sorry about your boyfriend. But, if someone doesn't stay with you during the bad times, you really don't need them in your life.
Get support from those around you that love you unconditionally.
Good luck and hugs!0 -
I know.
I know you're right. But, I REALLY love my boyfriend and he is a GREAT person who has shown SO much love to me. I just don't get why this is happening. I know that he is probably freaked out and that I've been weepy all the time and that can't possibly help.
But, I hope you guys are right. I hope that we are just seeing what works on the cancer and that then I will go into remission. I am now dealing with the fact that they told me my hair wouldn't fall out and now it is.
I've lost a lot, but I still have some. I feel so unpretty and it's just going to get worse and I don't want to feel insecure about my boyfriend since he tried to dump me yesterday. I think that we are now sort of "dating" but not serious. But, I JUST want to feel secure. I feel confident usually (with hair) but he is making me feel like I have a reason to be insecure.
I don't want to think that my life is over. I was SOOOOO happy with my boyfriend. I had NEVER been that happy in my whole life. And, it's not like I was happy and he was just miserable or something. I really think he was happy too. I was just content and I've been totally blindsided by this.
Thanks everybody for listening. I don't want relationship drama as well as chemo drama.
And, I don't want to be bald and sick for the rest of my days. I want something to happen and then I want to feel good! GOOD!0 -
Think of you 1stowly said:I know.
I know you're right. But, I REALLY love my boyfriend and he is a GREAT person who has shown SO much love to me. I just don't get why this is happening. I know that he is probably freaked out and that I've been weepy all the time and that can't possibly help.
But, I hope you guys are right. I hope that we are just seeing what works on the cancer and that then I will go into remission. I am now dealing with the fact that they told me my hair wouldn't fall out and now it is.
I've lost a lot, but I still have some. I feel so unpretty and it's just going to get worse and I don't want to feel insecure about my boyfriend since he tried to dump me yesterday. I think that we are now sort of "dating" but not serious. But, I JUST want to feel secure. I feel confident usually (with hair) but he is making me feel like I have a reason to be insecure.
I don't want to think that my life is over. I was SOOOOO happy with my boyfriend. I had NEVER been that happy in my whole life. And, it's not like I was happy and he was just miserable or something. I really think he was happy too. I was just content and I've been totally blindsided by this.
Thanks everybody for listening. I don't want relationship drama as well as chemo drama.
And, I don't want to be bald and sick for the rest of my days. I want something to happen and then I want to feel good! GOOD!
Think of you first is the most important thing. As women we always think of others feeling and put ourselves last. Frist of all you do not have to put on a strong face for anyone. It hard enough fighting this disease by itself. Why do we have fight our emotions to make other feel better. Stop putting others first focus on yourself. Ask your doctor questions and figure out what need to be done to help you go back into remission. Secondly like person on the broad said if your boyfriend can't stick with you through bad times, maybe he not the one for you. I also believe it reason for everything we just don't know why? Yes it hard to go through a recurrence a second time around you feel like you on a never ending ride. So try and keep your head up and remember you are not you hair. The beauty is within us and will shine through. Good luck with your treatment and you are in my prayers.
Sorry if I sound rough but I believe we need all are energy to get better.
Barb0 -
I agreebjmom1 said:Think of you 1st
Think of you first is the most important thing. As women we always think of others feeling and put ourselves last. Frist of all you do not have to put on a strong face for anyone. It hard enough fighting this disease by itself. Why do we have fight our emotions to make other feel better. Stop putting others first focus on yourself. Ask your doctor questions and figure out what need to be done to help you go back into remission. Secondly like person on the broad said if your boyfriend can't stick with you through bad times, maybe he not the one for you. I also believe it reason for everything we just don't know why? Yes it hard to go through a recurrence a second time around you feel like you on a never ending ride. So try and keep your head up and remember you are not you hair. The beauty is within us and will shine through. Good luck with your treatment and you are in my prayers.
Sorry if I sound rough but I believe we need all are energy to get better.
Barb
I am learning to focus on myself and my needs.
And, I think it's going to work out with my boyfriend. We have talked and I think we will be ok. Honestly, I think that he is a little freaked out and that he doesn't know how to just be. I think we're going to be fine.
I am going to meet both with the cancer counselor AND with my oncologist this week. I'm excited to map out my treatment and have a clear idea of what's going to happen. I think that once I know what my treatment will really be I will feel better.
Thank you guys SO much! I have never posted on anything before, but I needed some real support. This was honestly the worst week of my life and that's saying a lot because I've been through cancer AND a bad marriage. ha
LOVE LOVE0 -
I hope it works out for youowly said:I agree
I am learning to focus on myself and my needs.
And, I think it's going to work out with my boyfriend. We have talked and I think we will be ok. Honestly, I think that he is a little freaked out and that he doesn't know how to just be. I think we're going to be fine.
I am going to meet both with the cancer counselor AND with my oncologist this week. I'm excited to map out my treatment and have a clear idea of what's going to happen. I think that once I know what my treatment will really be I will feel better.
Thank you guys SO much! I have never posted on anything before, but I needed some real support. This was honestly the worst week of my life and that's saying a lot because I've been through cancer AND a bad marriage. ha
LOVE LOVE
I hope it works out for you and your bf if that is good for you and what you want.
Good luck with your appointment this week. Post to update us.
Good luck to you!0 -
HI
Owly, I'm sorry you are again dealing with cancer treatment. When the nurse said "indefinitely" she might have meant that the treatment will continue as long as it's working. Of course there is a limit to how much Taxol and Herceptin a person can receive, but as long as the drugs do not become overly toxic and they are keeping your cancer away, your doctor may recommend that you keep taking them.
Of course you could be in remission for many years and I hope you are. Talk to your doctor about this and let him know that you need specifics so you can plan your life. Good luck.
Mimi
PS. Please join us at www.youngsurvival.org, a site for women under 40 going through breast cancer. The "bulletin board" will connect you to lots of young women going through your experience. It's a great site.0 -
I think Mimi is right
Indefinitely doesn't mead forever, it just means they don't know for exactly how long the treatments may be needed.
So sorry for your diagnosis and your dissappointment in your bf's reaction to it. Hopefully he will truly be there for you, but I'm also sure that you'll be strong enough to fight this battle no matter what. You have already found a great resource on these boards, and the one Mimi recommended will no doubt be very helpful as well.
I hope that you keep coming here to ask questions, vent, and share your journey with this community. This is such a great group of caring individuals, many of whom know a whole lot about what you're going through and feeling.
Take care,
Cindy0 -
Hello OwlyAlexis F said:I hope it works out for you
I hope it works out for you and your bf if that is good for you and what you want.
Good luck with your appointment this week. Post to update us.
Good luck to you!
I hope you are feeling better today. You have gotten many good advices and hopefully will talk to your oncologist. It is difficult to face it for a second time. Please stay connected , this site is a very good support system, including emotional and medical questions.
Wishing you good luck and minimal side effects
Hugs0 -
Happy to saycindycflynn said:I think Mimi is right
Indefinitely doesn't mead forever, it just means they don't know for exactly how long the treatments may be needed.
So sorry for your diagnosis and your dissappointment in your bf's reaction to it. Hopefully he will truly be there for you, but I'm also sure that you'll be strong enough to fight this battle no matter what. You have already found a great resource on these boards, and the one Mimi recommended will no doubt be very helpful as well.
I hope that you keep coming here to ask questions, vent, and share your journey with this community. This is such a great group of caring individuals, many of whom know a whole lot about what you're going through and feeling.
Take care,
Cindy
My bf and I went to the oncology counselor today and it was really great! We are going to be fine. But she helped us talk it out.
I have an appointment tomorrow to talk to my doctor. I am bringing two really strong ladies with me to discuss this stuff. I really need to know what my timeline will be. So, that's good.
I am so encouraged today! Tomorrow starting back with chemo. ugh. I can make it.
I will be tough!
Thank you guys for being so encouraging to me!0 -
Glad your oncologyowly said:Happy to say
My bf and I went to the oncology counselor today and it was really great! We are going to be fine. But she helped us talk it out.
I have an appointment tomorrow to talk to my doctor. I am bringing two really strong ladies with me to discuss this stuff. I really need to know what my timeline will be. So, that's good.
I am so encouraged today! Tomorrow starting back with chemo. ugh. I can make it.
I will be tough!
Thank you guys for being so encouraging to me!
Glad your oncology appointment went so well. Good luck with chemo owly!
Hugs, Jan0 -
Hi Owly, i don't know if yousurvivorbc09 said:Glad your oncology
Glad your oncology appointment went so well. Good luck with chemo owly!
Hugs, Jan
Hi Owly, i don't know if you have read my previous posts. I am Meena and i have just recently been diagnosed with a reoccurence, my cancer has spread to my liver, abdomen, and bones. I am on Taxol and Herceptin. My oncologist is also telling me that chemo is indefinitely! He told me that this is a chronic condition, like diabetes. I am shocked and numb by this whole reoccurence. I keep wondering how can i be on chemo forever? Oh, to be bald and sick for an indefinite period. I go for treatment weekly, and will be having my 3rd treatment this Thursday. Please keep in touch with me, i am so confused about this whole thing. take care...0 -
Hey!
I went to my oncologist yesterday and she cleared some things up for me. Number 1, I am in control of my treatment. I am driving this bus. I can control who I talk to about my treatment and where I get my answers.
Number 2, we have a deck of cards when it comes to treating this. When they say indefinite, that means that they want to use whatever's working for however long it will work. I will also be on herceptin for a while, but I can totally handle that.
I have not lost all my hair. At this point we are going to stay on herceptin but take a break from taxol.
We made this decision because I have had a little neuropathy and I am a violinist. Therefore, I REALLY need to make sure that taxol is the "card" we want to play.
They do consider a recurrence to be a chronic illness like diabetes, but it IS POSSIBLE to go into a remission for years! So, chin up. They come out with new treatments ALL the time!
And REALLY good news! My tumor markers in my blood test started out at 113 when I was diagnosed. Then they were 99, then they were 84 and now. . .40!! Yeay!
So, it's all good news.
0 -
Hey Owlyowly said:Hey!
I went to my oncologist yesterday and she cleared some things up for me. Number 1, I am in control of my treatment. I am driving this bus. I can control who I talk to about my treatment and where I get my answers.
Number 2, we have a deck of cards when it comes to treating this. When they say indefinite, that means that they want to use whatever's working for however long it will work. I will also be on herceptin for a while, but I can totally handle that.
I have not lost all my hair. At this point we are going to stay on herceptin but take a break from taxol.
We made this decision because I have had a little neuropathy and I am a violinist. Therefore, I REALLY need to make sure that taxol is the "card" we want to play.
They do consider a recurrence to be a chronic illness like diabetes, but it IS POSSIBLE to go into a remission for years! So, chin up. They come out with new treatments ALL the time!
And REALLY good news! My tumor markers in my blood test started out at 113 when I was diagnosed. Then they were 99, then they were 84 and now. . .40!! Yeay!
So, it's all good news.</p>
I am so happy for you I am glad that Chemo is working, 38 is a norm so you are almost there. I am glad that you had heart tp haer with oncologist and feel very confident and in control.
Please stay in touch and be positive.
Hugs,
New Flower0 -
Yeh for tumor markers beingNew Flower said:Hey Owly
I am so happy for you I am glad that Chemo is working, 38 is a norm so you are almost there. I am glad that you had heart tp haer with oncologist and feel very confident and in control.
Please stay in touch and be positive.
Hugs,
New Flower
Yeh for tumor markers being better! You are so positive owly, and, that is half the battle. Stay that way!
Big hugeroos,
Sue 0
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