looking for those with stage IV, mets to the liver
My sister (36) was recently diagnosed with adenocarcinoma. A baseball sized tumor was removed from her colon on May 3rd. She was in the hospital for over 3 weeks, and is still dealing with pain from that surgery (hematoma suspected). She has multiple tumors throughout the liver (her surgeon and I counted 12 as we looked at the CT scan), and of course, was given a grim prognosis. She will have the port-a-cath put in tomorrow morning, with chemo beginning on Tuesday. Those are the facts.
Now, for the concerns.
She is still trying to ween herself off of the pain meds. She is still not eating well or moving around very well. For a little bit, she was walking every day, but it seems she's sliding backwards yet again. My concern is that her immune system isn't going to be able to handle her chemo very well... since she seems to be going into it without much strength to start. I can only imagine how discouraging and difficult it will be for her if she's sick from the get-go.
She has also made a conscious choice to not talk about her cancer, and even has playfully (?) called it "mold" instead. While she did finally sit down with her mom and talk about the "medical stuff" today, I'm still so concerned about how she is coping with all of this. How is she going to fight it if she has such a hard time acknowledging it?
Our faith is very strong, and you should know that we are praying for healing. At the same time, I feel that there are additional ways that she could be fighting this fight... like paying attention to nutrition, talking with others as yourselves for positive feedback and support (I signed her up for ACS and left it open on her computer... but I don't think she's done anything with it), joining a support group in the area, etc.
She's not a researcher, so I've elected to do that for her. Unfortunately, I am not the caregiver who is with her 24/7, and said caregiver and I are, apparently, disagreeing on how to help. My input seems to be unwanted by the one who has taken it upon herself to speak for my sister. I say, if you want to fight, stand up and fight (is it wrong to feel that prayer is only ONE form of fighting?). Of course, there's much more to that... but I'll leave it at that. Its very frustrating. My sister and I have been very close... but now I feel like I can't even have a conversation with her... she's so rarely alone. It seems as though she's being pulled into a bubble, and being discouraged from her own independence. I understand that she has to cope with this in her own time. Her mother actually got angry at me when I suggested that my sister connect with proper support NOW, and said to me that she's still just getting started. Her chemo is in two days.
My opinion, if it matters, is that she needs to connect with folks who are walking or who have walked the path she's beginning. But she's always been a follower, and it doesn't seem to matter at this point that I only want to lead her in a direction that will help.
Help?
Comments
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WOW...
What a great brother you are to your sister, she's lucky to have you. You are doing all you can for her, but she does have to learn to help herself as well, and I like she is at least playfully calling her cancer "mold"...at least she has a sense of humor there, and hopefully she keeps it throughout her new journey!
I was diagnosed Stage 4 Colon Cancer with a tumor in the liver as well, in January of this year, and am on the chemo treatment Folfiri with Avastin. Avastin is a drug that is pretty new, and cuts off the blood vessels supply to the tumor, so it stops the growth, it just starves the tumor. I am supposed to have 12 treatments, and will be doing my 6th on Wednesday, so I'm halfway there. My first CT scan last month showed that the chemo has killed most of my cancer, after all I had been through this year, it was good to hear some good news!
Please stay off alot of the internet garbage, it will depress you, and alot of it is outdated, they have such wonderful advancements in technology these days, that there are so many more people living with this disease, I met people in the Chemo room who have had it for years, so there is hope out there, and make sure your sister knows that, and not to think of this as a death sentence, make sure she keeps thinking positively, and goes to a major cancer center with a good reputation, you don't want to go to some local hospital where they don't know much about what they're doing, right?
I do need to start eating better, but heck, I know people who were vegetarians and ate everything organic, ate all healthy, exercised, were in great shape, and they still got cancer..so from the nutrition point of view, I sometimes don't think it really matters, I do eat more veggies and fruits though for vitamins and minerals and all that though.
I'm sure you'll hear from more people, this is a wonderful place to be for encouragement and hope, and yes, there is hope, hopefully your sister will come here and say HI as well
keep posting and keep the faith!
Hugssss!
~Donna0 -
I have been diagnosed withShayenne said:WOW...
What a great brother you are to your sister, she's lucky to have you. You are doing all you can for her, but she does have to learn to help herself as well, and I like she is at least playfully calling her cancer "mold"...at least she has a sense of humor there, and hopefully she keeps it throughout her new journey!
I was diagnosed Stage 4 Colon Cancer with a tumor in the liver as well, in January of this year, and am on the chemo treatment Folfiri with Avastin. Avastin is a drug that is pretty new, and cuts off the blood vessels supply to the tumor, so it stops the growth, it just starves the tumor. I am supposed to have 12 treatments, and will be doing my 6th on Wednesday, so I'm halfway there. My first CT scan last month showed that the chemo has killed most of my cancer, after all I had been through this year, it was good to hear some good news!
Please stay off alot of the internet garbage, it will depress you, and alot of it is outdated, they have such wonderful advancements in technology these days, that there are so many more people living with this disease, I met people in the Chemo room who have had it for years, so there is hope out there, and make sure your sister knows that, and not to think of this as a death sentence, make sure she keeps thinking positively, and goes to a major cancer center with a good reputation, you don't want to go to some local hospital where they don't know much about what they're doing, right?
I do need to start eating better, but heck, I know people who were vegetarians and ate everything organic, ate all healthy, exercised, were in great shape, and they still got cancer..so from the nutrition point of view, I sometimes don't think it really matters, I do eat more veggies and fruits though for vitamins and minerals and all that though.
I'm sure you'll hear from more people, this is a wonderful place to be for encouragement and hope, and yes, there is hope, hopefully your sister will come here and say HI as well keep posting and keep the faith!
Hugssss!
~Donna
I have been diagnosed with stage 4 colon cancer. 3 - 4 mets in liver. I am a true believer in being pro active about your disease. I think most of the people who have survived stage 4 colon cancer is because they were pro active and checked out all their options. Look at a profile on the board called amcp. There was seemingly no hope for her husband and because they explored their options his odds are now good. There are plenty of people on this sight who have either survived stage 4 colon cancer or have lived with it for many years. One of the things I read somewhere that stuck in my head about cancer was to know your enemy. Research is great. If you were stuck in a hole and you knew there might be a way out, wouldn`t you investigate? Ultimately your sister has to come to terms with it on her own. You can`t make her do anything. If she is not a researcher then be strong where she is weak and maybe when she gets over the initial shock she will come around. Cancer patients need a good support but they do not need added stress. My suggestion is to be kind and patient with her but do your utmost to help her have the best chance for survival. Those of us fighting cancer and the loved ones that support us are all soldiers fighting a battle. The best strategy for battle is to prepare yourself, come up with a game plan , and most of all, know your enemy. How can you fight an enemy if you don`t know how they operate?
I agree with Donna. You are being a good brother and it`s obvious you want the best for your sister.
Your fellow cancer soldier,
Eric0 -
P.s.I have seen people oneric38 said:I have been diagnosed with
I have been diagnosed with stage 4 colon cancer. 3 - 4 mets in liver. I am a true believer in being pro active about your disease. I think most of the people who have survived stage 4 colon cancer is because they were pro active and checked out all their options. Look at a profile on the board called amcp. There was seemingly no hope for her husband and because they explored their options his odds are now good. There are plenty of people on this sight who have either survived stage 4 colon cancer or have lived with it for many years. One of the things I read somewhere that stuck in my head about cancer was to know your enemy. Research is great. If you were stuck in a hole and you knew there might be a way out, wouldn`t you investigate? Ultimately your sister has to come to terms with it on her own. You can`t make her do anything. If she is not a researcher then be strong where she is weak and maybe when she gets over the initial shock she will come around. Cancer patients need a good support but they do not need added stress. My suggestion is to be kind and patient with her but do your utmost to help her have the best chance for survival. Those of us fighting cancer and the loved ones that support us are all soldiers fighting a battle. The best strategy for battle is to prepare yourself, come up with a game plan , and most of all, know your enemy. How can you fight an enemy if you don`t know how they operate?
I agree with Donna. You are being a good brother and it`s obvious you want the best for your sister.
Your fellow cancer soldier,
Eric
P.s.
I have seen people on here who have had as many as 11 - 12 tumors on their lungs and the oncologist was able to shrink them down to just a few and make them eligible for liver surgery. The odds are not great but it is possible to either beat this or live with it for a long time.I also believe prayer definitely helps.0 -
Thanks Donna!Shayenne said:WOW...
What a great brother you are to your sister, she's lucky to have you. You are doing all you can for her, but she does have to learn to help herself as well, and I like she is at least playfully calling her cancer "mold"...at least she has a sense of humor there, and hopefully she keeps it throughout her new journey!
I was diagnosed Stage 4 Colon Cancer with a tumor in the liver as well, in January of this year, and am on the chemo treatment Folfiri with Avastin. Avastin is a drug that is pretty new, and cuts off the blood vessels supply to the tumor, so it stops the growth, it just starves the tumor. I am supposed to have 12 treatments, and will be doing my 6th on Wednesday, so I'm halfway there. My first CT scan last month showed that the chemo has killed most of my cancer, after all I had been through this year, it was good to hear some good news!
Please stay off alot of the internet garbage, it will depress you, and alot of it is outdated, they have such wonderful advancements in technology these days, that there are so many more people living with this disease, I met people in the Chemo room who have had it for years, so there is hope out there, and make sure your sister knows that, and not to think of this as a death sentence, make sure she keeps thinking positively, and goes to a major cancer center with a good reputation, you don't want to go to some local hospital where they don't know much about what they're doing, right?
I do need to start eating better, but heck, I know people who were vegetarians and ate everything organic, ate all healthy, exercised, were in great shape, and they still got cancer..so from the nutrition point of view, I sometimes don't think it really matters, I do eat more veggies and fruits though for vitamins and minerals and all that though.
I'm sure you'll hear from more people, this is a wonderful place to be for encouragement and hope, and yes, there is hope, hopefully your sister will come here and say HI as well keep posting and keep the faith!
Hugssss!
~Donna
You're right about the internet... what a depressing black pit of doom. The research I'm doing is more about nutrition than the disease itself (ie foods that help boost the immune system), although google did come in quite handy when I wanted to learn more about the port. Nutrition as a form of therapy is a passion of mine, since I have a young son who has responded well to a revised diet due to food sensitivities (otherwise we would have some sort of autism spectrum dx). So that is where the concentration of my research is. Seems to me that what she chooses to eat is a small way of regaining a sense of control over a situation that otherwise offers none.
As far as treatment... she's following where the doctors are leading, so far. She was actually very blessed with a surgeon who tracked her down to make sure he was the one to do the port tomorrow. He's also a man of faith, and is perfectly matched with our sense of hope. But, as far as her oncologist and where she'll be getting her chemo - its at a medical center for her insurance company. We are in the Atlanta area.
One of the things I would do if it were me in her shoes is look into ALL of my options. She hasn't done that, and likely won't. Would it be wrong for me to do that for her? Isn't it too late since chemo will start so soon? She's due for 4-6 treatments at 2 week intervals, to start. That doesn't seem aggressive enough to me, for some reason. She'll be getting Folfox with Avastin starting at her second treatment.
I want to cry with tears of joy just reading that your treatments have been so successful so far! And I don't even know you! Thank you so much for sharing your story with me.
And oh... I'm the sister.
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Sorry for calling you thePoppet1 said:Thanks Donna!
You're right about the internet... what a depressing black pit of doom. The research I'm doing is more about nutrition than the disease itself (ie foods that help boost the immune system), although google did come in quite handy when I wanted to learn more about the port. Nutrition as a form of therapy is a passion of mine, since I have a young son who has responded well to a revised diet due to food sensitivities (otherwise we would have some sort of autism spectrum dx). So that is where the concentration of my research is. Seems to me that what she chooses to eat is a small way of regaining a sense of control over a situation that otherwise offers none.
As far as treatment... she's following where the doctors are leading, so far. She was actually very blessed with a surgeon who tracked her down to make sure he was the one to do the port tomorrow. He's also a man of faith, and is perfectly matched with our sense of hope. But, as far as her oncologist and where she'll be getting her chemo - its at a medical center for her insurance company. We are in the Atlanta area.
One of the things I would do if it were me in her shoes is look into ALL of my options. She hasn't done that, and likely won't. Would it be wrong for me to do that for her? Isn't it too late since chemo will start so soon? She's due for 4-6 treatments at 2 week intervals, to start. That doesn't seem aggressive enough to me, for some reason. She'll be getting Folfox with Avastin starting at her second treatment.
I want to cry with tears of joy just reading that your treatments have been so successful so far! And I don't even know you! Thank you so much for sharing your story with me.
And oh... I'm the sister.
Sorry for calling you the brother too.0 -
You're a good advocate
My cancer was not as advanced, so I can't offer pratical advice on liver mets, etc. But I just wanted to welcome you to the board and tell you that I think you're doing a great job of being an advocate for your sister. I know it's hard for you to accept her attitude right now, but I'll tell you this, cancer really does do a number on a person's mind. Sometimes it takes awhile to come to terms with it. Just keep loving your sister and supporting her. And pray for her!
Come back often to get answers to questions and support you might need.
*hugs*
Gail0 -
Eric... thank you!eric38 said:P.s.I have seen people on
P.s.
I have seen people on here who have had as many as 11 - 12 tumors on their lungs and the oncologist was able to shrink them down to just a few and make them eligible for liver surgery. The odds are not great but it is possible to either beat this or live with it for a long time.I also believe prayer definitely helps.
Thank you so much for sharing your story with me... I've definitely come to the right place! I love my sister to pieces and have such a hard time going along with the status quo. I agree with what you said and love the way you said it... KNOW YOUR ENEMY. YES! When we were facing a possible future of autism spectrum in our young son, I researched until I had a headache, many nights in a row. Many people were praying, and I believe that God led me to the information I needed in order to pull him out of that "certainty" of which the experts were trying to convince me. I didn't accept defeat then, and I'll do everything that I can, as a family member, to not accept defeat now. Thank you again!
(the sister!)0 -
Sorry about your sister...
Hello Poppet ~
So sorry to read about your sister. That is tough news indeed. It's good you have come here for support - hopefully she will join us at some point. It truly was a life line for me when I was in treatment, so hopefully it will be for her...and you...too.
That old saying that you can lead a horse to water, but you can't make it drink comes to mind... You know what I'm saying?
Anyway, as for your immediate question of how to help your sister? Establishing peace in your family should be one of the top five things on your list. Getting a cancer diagnosis is rough enough, but having too many people tugging on your ear giving differing opinions can be crazy making, especially if you're not feeling well and especially if you're unsure of which way to turn.
You might consider gathering the primary players...you, her mom, her primary caregiver, and any other primary person in her life (not children) and talk about how collectively you can best help her. Seek a consensus among your group and then be a united source of help for your sister. At this time your sister does not need to be the source of disagreement between the people she loves.
Aside from that all you can do is be there for your sister. You can make suggestions, but ultimately it's up to her to make a move. If she is in denial she might need to speak with a counselor who has experience working with people with serious illnesses - most hospitals or cancer centers can recommend someone. Perhaps speaking with a neutral and objective person might help her come to terms with what is happening in her life and give her some encouragement to take action.
I will keep your sister, you and the rest of your family in my thoughts and prayers.
Katie0 -
Thank you, Gail!tootsie1 said:You're a good advocate
My cancer was not as advanced, so I can't offer pratical advice on liver mets, etc. But I just wanted to welcome you to the board and tell you that I think you're doing a great job of being an advocate for your sister. I know it's hard for you to accept her attitude right now, but I'll tell you this, cancer really does do a number on a person's mind. Sometimes it takes awhile to come to terms with it. Just keep loving your sister and supporting her. And pray for her!
Come back often to get answers to questions and support you might need.
*hugs*
Gail
Thank you for the welcome and for the words of encouragement. You're right, it IS difficult to wait for certain things. I have a friend who is a colon cancer survivor, but it had not made it to stage 4. Still, she says that there are likely things going on my sis's head that she's not telling anyone around her. That is why I so desperately want to get her hooked up with other survivors. As supportive and loving as us family members can and want to be, we simply don't know what she's feeling. We've not been there. Her mother's (sis is step-sis, so that's why I keep saying "her" mother) implication that she needs time to come to terms with all of this before seeking the right support system, well, it just seems backwards to me.
So, until then, as you said, I'll just get the support that *I* need. Because I'll tell you what... I was the one who was with her when the doctor said the words.... and I'll never forget that day as long as I live. I said early on that cancer doesn't just happen to the one who has it.
Thanks again!0 -
Katie... you're right...usakat said:Sorry about your sister...
Hello Poppet ~
So sorry to read about your sister. That is tough news indeed. It's good you have come here for support - hopefully she will join us at some point. It truly was a life line for me when I was in treatment, so hopefully it will be for her...and you...too.
That old saying that you can lead a horse to water, but you can't make it drink comes to mind... You know what I'm saying?
Anyway, as for your immediate question of how to help your sister? Establishing peace in your family should be one of the top five things on your list. Getting a cancer diagnosis is rough enough, but having too many people tugging on your ear giving differing opinions can be crazy making, especially if you're not feeling well and especially if you're unsure of which way to turn.
You might consider gathering the primary players...you, her mom, her primary caregiver, and any other primary person in her life (not children) and talk about how collectively you can best help her. Seek a consensus among your group and then be a united source of help for your sister. At this time your sister does not need to be the source of disagreement between the people she loves.
Aside from that all you can do is be there for your sister. You can make suggestions, but ultimately it's up to her to make a move. If she is in denial she might need to speak with a counselor who has experience working with people with serious illnesses - most hospitals or cancer centers can recommend someone. Perhaps speaking with a neutral and objective person might help her come to terms with what is happening in her life and give her some encouragement to take action.
I will keep your sister, you and the rest of your family in my thoughts and prayers.
Katie
She certainly doesn't need to be worrying about what's going on between me and her mother. Right now, its just us two who are present. Others have come in from out of town, and gone home. Her mother is here from California for the long haul (who knows?). I live here. Today was certainly not a good presentation of our unified support. Every time I made a suggestion that she strive for some sort of independence (its who she is), her mother would get more irritated with me. I finally got up and left after having my head taken off. Yep... all right in front of my sister, who said nothing. How can she? Her mother speaks for her now.
We'll have to find a way to smile and make nice at the port appt tomorrow. A meeting of the minds? Unfortunately, its hard to come to that when only one side respects and is open to the ideas of others.
But I definitely agree with what you said, and will keep it in mind from this day forward. I predict a lot of tongue biting in my near future. Thanks for your forthrightness (is that a word? lol).0 -
I apologize!Poppet1 said:Thanks Donna!
You're right about the internet... what a depressing black pit of doom. The research I'm doing is more about nutrition than the disease itself (ie foods that help boost the immune system), although google did come in quite handy when I wanted to learn more about the port. Nutrition as a form of therapy is a passion of mine, since I have a young son who has responded well to a revised diet due to food sensitivities (otherwise we would have some sort of autism spectrum dx). So that is where the concentration of my research is. Seems to me that what she chooses to eat is a small way of regaining a sense of control over a situation that otherwise offers none.
As far as treatment... she's following where the doctors are leading, so far. She was actually very blessed with a surgeon who tracked her down to make sure he was the one to do the port tomorrow. He's also a man of faith, and is perfectly matched with our sense of hope. But, as far as her oncologist and where she'll be getting her chemo - its at a medical center for her insurance company. We are in the Atlanta area.
One of the things I would do if it were me in her shoes is look into ALL of my options. She hasn't done that, and likely won't. Would it be wrong for me to do that for her? Isn't it too late since chemo will start so soon? She's due for 4-6 treatments at 2 week intervals, to start. That doesn't seem aggressive enough to me, for some reason. She'll be getting Folfox with Avastin starting at her second treatment.
I want to cry with tears of joy just reading that your treatments have been so successful so far! And I don't even know you! Thank you so much for sharing your story with me.
And oh... I'm the sister.
I don't know where I got you were the brother, there is a post here from a brother about his sister, and I got mixed up! I'm very sorry... blame my "chemo brain!"
Hugssss!
~Donna0 -
Give her some timePoppet1 said:Katie... you're right...
She certainly doesn't need to be worrying about what's going on between me and her mother. Right now, its just us two who are present. Others have come in from out of town, and gone home. Her mother is here from California for the long haul (who knows?). I live here. Today was certainly not a good presentation of our unified support. Every time I made a suggestion that she strive for some sort of independence (its who she is), her mother would get more irritated with me. I finally got up and left after having my head taken off. Yep... all right in front of my sister, who said nothing. How can she? Her mother speaks for her now.
We'll have to find a way to smile and make nice at the port appt tomorrow. A meeting of the minds? Unfortunately, its hard to come to that when only one side respects and is open to the ideas of others.
But I definitely agree with what you said, and will keep it in mind from this day forward. I predict a lot of tongue biting in my near future. Thanks for your forthrightness (is that a word? lol).
Give her some time... Just being there for her with love and support is what she needs right now. I know it is very difficult for you but I'm sure it is overwhelming for her -especially not feeling well. Most likely she is having some depression and understandibly so.
I was diagnosed Stage IV in Oct. 2007. I joined the board a little while after diagnosis but would come only occasionally to read other posts. For ME it was too fresh,too painful,too scary. I did not start posting until I was done with chemo. Others come right after diagnosis.Just you letting her know that this site is available to her is wonderful and hopefully she will come when she is ready. In the meantime you know that we are here and you can come often for the support that you need.
You asked " Is it wrong to think prayer is only ONE form of fighting" I say absolutely not. I am a women of strong faith and know that healing can come from God.Prayer has been the most important part of this journey. That does not stop me from being proactive about my medical treatments,diet, exercise,attitude etc. My choice is to partner with God to fight this fight.
I hope that things can be mended between you and her mother. She needs you both in her life right now. You both have the same goal- To love, support, and help your sister fight this battle- just different theories in what she need and how to go about it. She is lucky -you obviously care about her a great deal.
Please come her for support and know that we are here to help however we can.
Dawn0 -
WOW
First, I'm sorry to hear about your sister.
Second, she is lucky to have a brother like you.
My brother took on the task of the insurance companies and getting me into Sloan Kettering to meet the top Onc and all. It's a hard task and it's great you can do it. Credit goes to those who can do it themselves like Eric has (I believe) but it's like getting sucker punched in a way and not always easy to figure out what to do.
It sounds like you are stuck between a rock and a bigger rock with caregivers (?) and your sister being in denial. While I have my own beliefs, I think praying (however one goes about it) is a good thing. However...I feel there has to be medical and/or nutritional intervention included. This site is great too because WE have been there and back. It's not hopeless and there is plenty of support on the nutritional, spiritual, medical fronts.
Your opinion matters a lot, to me is sounds like you are possibly the ONLY one who truly cares about your sister. The others sound to me like they have other agendas. I may be wrong but I'd rather have you on my side then the others. I would keep on gathering information and also try to be with her at her appointments even if the "caregiver" does not want you there. I hope that your sister will want you there.
Everyone handles cancer in their own way, there is no right or wrong but denial will not make it go away. Maybe she isn't ready for an in person support group. I did the Gilda's Club for a while and it ran it's course for me. I found that speaking with a therapist has been great for me, maybe someone in your church could be of help?
I hope I was of some help. Please don't give up on her.
If you want to email or pmail me from hear I'll be more than happy to help however I can.
-phil
PS: just reading what Katie posted and she has a great point. You don't want to be at odds with the others. It's about how can you all help your sister/daughter the best. Hopefully everyone will be open to it.0 -
forthrightnessPoppet1 said:Katie... you're right...
She certainly doesn't need to be worrying about what's going on between me and her mother. Right now, its just us two who are present. Others have come in from out of town, and gone home. Her mother is here from California for the long haul (who knows?). I live here. Today was certainly not a good presentation of our unified support. Every time I made a suggestion that she strive for some sort of independence (its who she is), her mother would get more irritated with me. I finally got up and left after having my head taken off. Yep... all right in front of my sister, who said nothing. How can she? Her mother speaks for her now.
We'll have to find a way to smile and make nice at the port appt tomorrow. A meeting of the minds? Unfortunately, its hard to come to that when only one side respects and is open to the ideas of others.
But I definitely agree with what you said, and will keep it in mind from this day forward. I predict a lot of tongue biting in my near future. Thanks for your forthrightness (is that a word? lol).
It is a word
http://dictionary.reference.com/browse/forthrightness
What I often do is bring my mp3 player that has a voice recorder in it to meetings.
It helps me0 -
my input
Hi,
I've just been reading through everyone's posts and replies here. Lots of good information and advice that I'd have to agree with! I did post a long reply on another discussion thread to a brother who's sister was just diagnosed (hence probably the confusion in people here calling you the brother!) Anyhow, it was fairly long, and I don't have it in me at this very moment to type my whole story out again. If you'd like, you may want to read it if you haven't yet (under "needing some positive input" or something like that)- his sister did end up posting on her own more recently as well.
In a nutshell, I was diagnosed at age 41 as stage IV rectal cancer w/ mets. in my liver and both lungs. I was considered inoperable because of too many widespread tumors (at least 12 in my liver). I started in on chemo pretty quickly (it didn't seem quickly enough at the time, though- I wanted those tumors out of my body!!) I also had chemo treatments every 2 weeks. Having chemo either every 2 or every 3 weeks is pretty standard- it continues to work in the body for a while after a treatment. Just 5 or 6 treatments every two weeks, however, does not seem like enough- I'd check w/ the oncologist, if possible, to see if he/she really said sis needs only 5 or 6 treatments when she has so many tumors. The standard is 12 treatments, although some people only complete 10 cycles of it. I only had 10 treatments and did very, very well. I stopped a little early because of issues I was having with the oxalyplatin chemo. It did seem that most of the tumor shrinking occured for me in the first three treatments. There was definitely more tumor shrinkage after that, but it was the most dramatic after the first three. I had a CT scan at that point, which is how I knew what had shrunk.
I'm a Christian and my faith was central in getting me through all this- I also believe I had a couple of miracles along the way. If you'd like to PM me (send me a private message) through the internal email/messaging system, I'd be glad to share that more with you and be of more support to you and your sister. Let me know if you're not sure how to send a private message.
For now, I will be praying for the communication to open up between you and your sister's mom, so that you will be on the same page instead of working against each other. I'll pray that her mom will be more open to you and your ideas, thoughts, feelings, etc. Also, that your sister will have a surge of confidence (once she gets past this initial shock), and that she will not allow her mother to do all her talking and decision making, but that she will speak up and want to start finding out more information for herself.
There really is a lot of hope-God is our hope- but, medically speaking, there is SO much more that can be done today than even just 3 or 4 years ago (remember that when you read any "survival statistics"- they're all outdated & are based on people who were diagnosed and treated at least 5 or more years ago).
God bless and take care,
Lisa0 -
There has been controversyPoppet1 said:Eric... thank you!
Thank you so much for sharing your story with me... I've definitely come to the right place! I love my sister to pieces and have such a hard time going along with the status quo. I agree with what you said and love the way you said it... KNOW YOUR ENEMY. YES! When we were facing a possible future of autism spectrum in our young son, I researched until I had a headache, many nights in a row. Many people were praying, and I believe that God led me to the information I needed in order to pull him out of that "certainty" of which the experts were trying to convince me. I didn't accept defeat then, and I'll do everything that I can, as a family member, to not accept defeat now. Thank you again!
(the sister!)
There has been controversy on this site regarding religious views before but I want you to know I am also a christian and will include you and your sister in my prayers. I have many people praying for me and I believe it makes a big difference.
Eric0 -
Poppet1
I'm so sorry about all that you and your family are going through. I have to say, I think I identify some with your sister although you wouldn't know that now.
I was diagnosed 8/07 at age 43 and am stage IV with multiple inoperable mets to the liver (10+) as well as distant (celiac) lymph nodes. In those early weeks of diagnosis, life is just surreal. I walked, went shopping, lunched with friends, whatever I could to not talk or think about canzer. That was always the main (and sometimes only) conversation there was. I hated it. Give her time.
Did you notice that I can't spell canzer? I also won't capitalize it. I hate it. I laugh at it. At my house, we tell colon jokes, colostomy jokes, gas jokes, poop jokes, and especially canzer jokes. I LOVE the mold reference. Perfect. She will not deal with this the way you would and you may not approve of what she does. She gets to call the shots even if it seems she's giving up her power right now. Maybe she needs to feel taken care of and who is better at that than Mom, at least for a short time? You will be amazed when all that starts to change.
When she's ready, she'll be so grateful for all your research and she will come here to get connected when she can bear it. She can also be assigned a Buddy at Colon canzer Alliance that would be near her geographic area, age, stage, but further along in the diagnosis. When I was newly diagnosed, I got advise from everyone. Read this book, listen to this success story, eat this, don’t eat that. I FELT as though I was being blamed for my canzer. That was not the intent, but feelings aren’t rational. She will feel what she feels even if it doesn’t make sense to anyone right now. Nothing in her life makes sense right now.
Keeping her spirits up is as important as anything. I have to say, unless there is a very unusual situation, most colon canzer patients could predict what the first course of treatment will be for you sister at this stage. It is pretty standard. She can start chemo and you have time to get her to other doctors for second opinions. I also recommend a NCI Comprehensive canzer Center for that. (I can get you the web list by state if you are interested.) She needs a team of oncologists that specialize in GI canzer w/mets. The team should include at least: medical oncologist, surgical oncologist and radiation oncologist.
In January, my doc was talking months. I got a very aggressive, unusual course of treatment and I'm currently "No Evidence of Active Disease". Now my team is using words like "stunned" and "miracle". My genetic oncologist is setting up clinical studies based on my case. It happens and it can happen for her. Be there on her terms right now. Suck it up with the mom... (yeah, I know). Try to have some FUN with her! Has she had ANY fun since this started? It's ok, you know. I don't do anything that's not fun, especially canzer! This $h!t could get depressing, you know!
Hope and Time. That's really what we all want. I will pray for your family - hope and time...oh, and maybe peace! LOL
Kimby0 -
'helping"
She's not a researcher, so I've elected to do that for her. Unfortunately, I am not the caregiver who is with her 24/7, and said caregiver and I are, apparently, disagreeing on how to help. My input seems to be unwanted..
-----------------------------------------------------------------------
As much as that must hurt...if you really want to help (and I am sure that you do) Then you need to try and respect that. Cancer is very stressful.. Your sister will accept things in stages. Perhaps you represent /threaten her biting off more than she can chew right now.(and she has enough to deal with )
Tell her you are there for her, *when she is ready*.
THAT will help her the most.
Best of luck for all of you involved.0 -
Takes Time1957person said:'helping"
She's not a researcher, so I've elected to do that for her. Unfortunately, I am not the caregiver who is with her 24/7, and said caregiver and I are, apparently, disagreeing on how to help. My input seems to be unwanted..
-----------------------------------------------------------------------
As much as that must hurt...if you really want to help (and I am sure that you do) Then you need to try and respect that. Cancer is very stressful.. Your sister will accept things in stages. Perhaps you represent /threaten her biting off more than she can chew right now.(and she has enough to deal with )
Tell her you are there for her, *when she is ready*.
THAT will help her the most.
Best of luck for all of you involved.
Poppitt, I had a liver resection surgery last year and it took me
a long time to get back on my feet; I spent five days in
hospital and two weeks in a rehab center because I did not have
a caregiver at home. Every day they made me get out of bed and
go to physical therpy; I was so wiped out in the hospital I didn't
get out of bed much and never made it to the hallway to walk; when
I had colon resection in 2004 I was up and out in the hospital
hallway walking up and down holding on to a rail....so a liver
resection takes a lot out of you. Then when I was physically
able to take care of myself and back at home, my spirits were so
low, I still was not myself. I started going to programs at the
local Wellness Community; networking group, yoga, guided imagery,
went to their programs on healthy cooking, dealing with side
effects of chemo, etc. I also take an anti-depressant. All of that
got me back together again. So give her time and slowly suggest
some other things to do, if it looks like the old vigor is not
yet back up to norm.
Barbara0
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