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Received bad news yesterday

rls67
rls67 Member Posts: 127

A little background on my wife. She was diagnosed in oct of 2012 with stage 4 cc, with mets on the liver and lungs. Went through 11 rounds of folfox, 10 rounds of folfiri. The mets on her liver doubled while on folfiri. The Dr put her on Zaltrap with Xeloda. After one month on that combo, she started having shortness of breath. The Dr sent her for a ct scan this past tuesday because she had fluid on her lungs. Well, we got the results back yesterday.The cancer has gotten worse. There are new spots and the spots she already had, has doubled in size since Oct. of this year. He put her on stivarga, (sp?) and told her this is the last hope for her. If this didn't work, he has nothing left to give her. He said he would contact either the cleveland clinic or sloan kettering. My heart is breaking right now. She is not only my wife, but my best friend. I could tell by the way he was answering my questions that he doesn't think stivarga is going to work and she probably has less than a year to live. I don't know what to tell my kids. How do I just keep going on like everything is normal? Thank you for reading this long post. You folks are such awesome people and I know you would understand how I am feeling. Thank you.

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Comments

  • Gavin63
    Gavin63 Member Posts: 98
    Hello Friend,
    Sad to hear the

    Hello Friend,

    Sad to hear the health status of your wife.  I can understand how you must be feeling  with little options left. By the way why not try out the Traditional Chinese Meds ? You have nothing to lose but everything to gain. I remember some of our friends posting regarding the Chinese Meds for Cancer which had worked for them.

    Our prayers are with you & your wife.

    Gavin

     

  • Lovekitties
    Lovekitties Member Posts: 3,364
    Dear rls67

    I am so very sorry that things have gotten worse for your wife.

    You ask how you keep going on like everything is normal.  My answer is...you don't.  News such as this changes everyone's life.  It makes it necessary to talk of things we have hoped to not deal with for decades to come.  Yet, we must continue to hope that somewhere, somehow there will be a life extending treatment.  For the caregiver it is like walking a tightrope...finding the balance between being encouraging yet dealing with the realities....being somewhat stoic without making our loved one think we don't get it or care...listening to our loved one's feelings and desires even when we wish they could or would make different choices...understanding that our loved one may present an array of emotions which are difficult to deal with, from denial to acceptance, from anger to complacency.

    Having been on both sides, as patient and then a caregiver, I have found the caregiver role far harder to deal with.  It falls to you to make the best of each day for your loved one and family that you can.

    I apologize but I don't recall how old your children are.  Their ages make a significant difference in what you tell them and when.

    In all of this, you must take care of yourself as well.

    Hoping that there is yet something out there that will give your family more time together.

    Hugs,

    Marie who loves kitties 

     

  • Chelsea71
    Chelsea71 Member Posts: 1,169
    My husband, Steve, passed

    My husband, Steve, passed away four months ago tomorrow.  He had liver and lung metastasis and fought super hard.  We went through hell together just as you and your wife have.  Steve was going to go on Stivarga.  At the last minute the onc changed his mind.  Said it wouldn't do any good and the liver likely couldn't handle it.  Unfortunately, Steve and I didn't have kids so I am not much help in that department.  Steve was my best friend and losing him was like losing an arm or leg.  Just wanted to let you know that I and many others understand the heartache your going through.  Stay strong and just keep moving forward, no matter what. Must keep putting one foot in front of the other.  One day at a time.  Maybe it would be a good idea to approach a counselor that works with children and get their opinion on how to handle it all with the kids.

     

    So so so sorry your all going through this.

    Chelsea

  • janderson1964
    janderson1964 Member Posts: 2,215
    I am so truly sorry to read

    I am so truly sorry to read your post. I don't know what to say since I am the survivor and don't have kids.

  • geotina
    geotina Member Posts: 2,111
    Truly Sad

    I am so very sorry for what you are facing, it is truly difficult, I know, I lost my husband to this disease October 29, 2012.  You will find strength you didn't know you had.

    You have children and I don't know their ages but they will need to understand what is happening.  One source that can be very helpful is the social worker/services at the hospital you are associated with.  They will send you in the right direction and can be very helpful to you and your children in dealing with what you are facing.  Don't lie to them, children understand much more than we give them credit for unless they are very young but telling them at the right time, in the right way, will help them through this difficult time.

    Wishing you peace and comfort as you face the days and months ahead -

    Tina

  • johnnybegood
    johnnybegood Member Posts: 1,117
    geotina said:

    Truly Sad

    I am so very sorry for what you are facing, it is truly difficult, I know, I lost my husband to this disease October 29, 2012.  You will find strength you didn't know you had.

    You have children and I don't know their ages but they will need to understand what is happening.  One source that can be very helpful is the social worker/services at the hospital you are associated with.  They will send you in the right direction and can be very helpful to you and your children in dealing with what you are facing.  Don't lie to them, children understand much more than we give them credit for unless they are very young but telling them at the right time, in the right way, will help them through this difficult time.

    Wishing you peace and comfort as you face the days and months ahead -

    Tina

    im sorry

    for this news i know it is hard i feel so many times all we are doing is just trying to prolong our death and trying to stay alive for our loved ones.i too have too many spots in my lungs and now another one has showed up in my liver.my best advice is to spend as much time with your wife and involve your kids also.take one day at a time and put one foot in front of the other....Godbless...johnnybegood

  • Coloncancerblows
    Coloncancerblows Member Posts: 296
    I am so sorry to hear about

    I am so sorry to hear about your wife.  I'll be praying for you and your family during this difficult time.

  • jen2012
    jen2012 Member Posts: 1,607
    I'm so sorry to read this.  

    I'm so sorry to read this.   Are your kids young?    It's so hard worrying about your wife and also worried about how the kids are dealing with/will deal with things.  If they are in school, having them talk to a favorite teacher or guidance counselor is a good idea, but they may be more comfortable with someone outside of school.  Our 16 yr old doesn't want to talk to anyone at school, the 13 yr old does see his guidance counselor regularly, but she thinks he should see someone outside of school.  We are looking for an art therapist to take him to.  The 2 year old is oblivious, which is kind of nice.   I think the best thing for the kids is for them to know that they will always be your priority.    Do your best and let them know you love them - wife and kids...that's really all we can do.  So damn unfair, it drives me crazy.  Come here to do your venting - you will get lots of support.

    TCM is probably not a bad idea to try if your wife is willing.  

  • Trubrit
    Trubrit Member Posts: 5,516
    Gut wrenching

    This news is absolutely gut wrenching. 

    I pray that you can keep strong for your wife and chidlren, no matter what age they are. 

    When I found out I had cancer, my first though was for my boys, even though they are 22 and 24 years old.

    The pain is so deep knowing what we may have to face. 

    Blessings to all of you as you continue this journey. 

    We are here for you whenever you need a shoulder. 

  • annalexandria
    annalexandria Member Posts: 2,571
    I am so sad to read this.

    Going through the cancer experience is hell for everyone involved, and it's a special kind of hell when you have to help your children through it as well.  I had a five year old and two teens when dx'ed stage 4 in '09, and we had a couple of times when things looked very bleak.

    It depends somewhat on the age of your children, but for us, it worked best to be honest while trying to not scare them too much.  We'd say things like "Mom has a great team of doctors, and they're doing their best to help her get healthy again".  But when they asked point-blank (as my oldest did), "Will mom die?", the answer we chose to give was "Maybe, but we hope not".

    There was a lot of crying together that went on, but I'm not so sure that's bad.   Our culture tends to not give us many chances to mourn together much, and I think the benefit for us about being hopeful but reasonably honest was that it gave us all a chance to share these terribly sad emotions.  The emotions are there whether you express them or not, so sharing them, imo, eases the incredible burden a little.

    But that was just how we handled it.  My sister died of cancer when she was 44, and she chose not to tell her 13 year old son that she was dying until literally days before she went into a coma.

    I was pretty judgemental of her choice at the time, but now that I've shared some of her experiences, I've come to the conclusion that it's different for everyone...what works for one family may not work for another, and there's no one right way to deal with what is, let's face it, one of the hardest things any of us will ever go through.

    I don't know if it's any comfort at all, but my BIL and nephew are doing very well now.  The first few years were incredibly hard, but the passage of time has eased the grief and pain.  No matter what the future holds, you and your kids will get through it, one step at a time.

    On a more practical and hopeful note, have you thought about looking into clinical trials?  You can use the "finder" function in the blue box on the left hand side, and get help from the ACS to see if there are any trials out there that might be appropriate for her.  And as others have mentioned, TCM might be worth looking into as an alt therapy.

    Many hugs, strength, love coming your way~AA

  • Goldie1
    Goldie1 Member Posts: 264
    Hello...

    I am so sorry to hear this.  My husband just started Stivarga (regorafenib) and we were told it is his last treatment option too.  Today, his oncologist sent us to Fox Chase Cancer Center in Philadelphia.  The doctor there told us that there are many clinical trials available for him if and when the Stivarga stops working.  We were also devasted that the Stivarga was his last option...I actually cried in the oncologist's office and I never do that!  But, we are still holding out hope that there may be something to turn to in the future.  We have been married 31 years and my husband is my best friend too.  Our children are young adults and we tell them everything because we feel they can handle it and they do.  We have also told them to continue with their lives, go out with friends, have fun, and when we need an extra hand, they are always there to help out.  And while things may not be as normal as before cancer, we try our hardest to at least live every day with some hope.  

    Take care,

    Ellen

  • jen2012
    jen2012 Member Posts: 1,607
    Today the social worker
    Today the social worker handed me a packet...help children when a family member has cancer; dealing with reoccurrence or progressive illness. Ive been reading through it and thought you may find it helpful. You can find it by looking at support programs (to the left) and then select children and cancer on the right.
  • annalexandria
    annalexandria Member Posts: 2,571
    jen2012 said:

    Today the social worker
    Today the social worker handed me a packet...help children when a family member has cancer; dealing with reoccurrence or progressive illness. Ive been reading through it and thought you may find it helpful. You can find it by looking at support programs (to the left) and then select children and cancer on the right.

    Another good resource,

    if you happent to have it in your area, is Gilda's Club.  Founded by Gene Wilder in memory of his wife.  It has a lot of wonderful programs for people with cancer, their kids, and caregivers.

    http://online.cancersupportcommunity.org/locations/

  • herdizziness
    herdizziness Member Posts: 3,624
    Oh dear

    I am so, so sorry to hear this.  As for normal?  No, make things special, an extra smile, and extra hand holding, lots of I love you's, those special moments, make sure there are more of them for your children for their memories of Mom, take lots of pictures, videos, make lots of smiles, and not just for the children's memories, but for yours as well.

    My heart hurts for you and your family,

    Winter Marie

  • traci43
    traci43 Member Posts: 773
    Tough news

    I think everyone has summed things up really well, I can't add much especially since I don't have kids.  I do worry about my husband and if he's eventually in your position.  It's got to be difficult to be upbeat but sympathetic, strong but not detached.  I hope you find that balance.  Take care of your wife, but also yourself. 

    My Weight Watchers leader explained the reason behind the instructions to put on your own air mask first in case of loss of airplane cabin pressure, then assist your child.  It's so that you don't pass out and can help your child.  I never thought about it that way.  If we don't take care of ourselves we may not be well enough to take care of others.

    Be sure to come here for support and ideas.  Praying for you, your wife, and family.  Traci

  • UncleBuddy
    UncleBuddy Member Posts: 1,019
    I'm sorry...

    I think you have a lot of good ideas here on this post. Talking to the social worker really helped me get things done for my brother. He/she will know exactly how to tell your kids. It's not something you can ignore and pretend things are normal, because they're not. Personally, I think the best thing you can do is enjoy every moment you have left. Spend as much time together as you can as a family. Take lots of pics and movies so you have memories for the kids. Just live life together and make every day special. 

    {{{HUGS}}}

    Lin

    PS I am praying that the stivarga works!!!

  • UncleBuddy
    UncleBuddy Member Posts: 1,019

    Oh dear

    I am so, so sorry to hear this.  As for normal?  No, make things special, an extra smile, and extra hand holding, lots of I love you's, those special moments, make sure there are more of them for your children for their memories of Mom, take lots of pictures, videos, make lots of smiles, and not just for the children's memories, but for yours as well.

    My heart hurts for you and your family,

    Winter Marie

    Winter Marie

    I love your new profile pic. What a beautiful child!!! God bless!!!

    Lin

  • rls67
    rls67 Member Posts: 127
    Thank you everyone.

    You have given me some great advice that i will be looking into. I am sorry, I forgot to mention the age of my kids. Our youngest is in his teens and the two older are in there early to mid twenties. Well, I sat down with them and explained what is happenning. It was the hardest thing I ever had to do. But I think they deserved to know. They seemed to have been in denial this past year. They didn't realize how serious there moms illness is. 

    On a positive note, I have many supportive friends at work. After telling them the news, I got called into the HR office and was told if we needed to travel for treatment to another city or state, they will help with the cost of travel and help with arrangements. How awesome is that! 

    I just want to thank all of you again. Even though I don't know you all personally,  I love you all. You folks are the best!

  • UncleBuddy
    UncleBuddy Member Posts: 1,019
    rls67 said:

    Thank you everyone.

    You have given me some great advice that i will be looking into. I am sorry, I forgot to mention the age of my kids. Our youngest is in his teens and the two older are in there early to mid twenties. Well, I sat down with them and explained what is happenning. It was the hardest thing I ever had to do. But I think they deserved to know. They seemed to have been in denial this past year. They didn't realize how serious there moms illness is. 

    On a positive note, I have many supportive friends at work. After telling them the news, I got called into the HR office and was told if we needed to travel for treatment to another city or state, they will help with the cost of travel and help with arrangements. How awesome is that! 

    I just want to thank all of you again. Even though I don't know you all personally,  I love you all. You folks are the best!

    I'm glad things went well.

    Do you think counseling may help your children come to terms with your diagnosis? If they were in denial to how bad it really is, maybe they need help getting through it? Just a thought...

    Wow, you work for an awesome company. I'm glad they are being so supportive. My brother worked for a major chain store. After being out for a year he was fired. At the time he only had a month of chemo left, but they didn't want to hear it. They said he had to reapply and start again at the lower salary. It ended up that he got sick again and was stage 4. too sick too even work, so it didn't really matter. But it sounds lie your company really cares for their employees and you have supportive friends. Yay! I love to hear stuff like this.

    Lots of hugs and prayers going out to you!

    Lin

     

  • rls67
    rls67 Member Posts: 127

    I'm glad things went well.

    Do you think counseling may help your children come to terms with your diagnosis? If they were in denial to how bad it really is, maybe they need help getting through it? Just a thought...

    Wow, you work for an awesome company. I'm glad they are being so supportive. My brother worked for a major chain store. After being out for a year he was fired. At the time he only had a month of chemo left, but they didn't want to hear it. They said he had to reapply and start again at the lower salary. It ended up that he got sick again and was stage 4. too sick too even work, so it didn't really matter. But it sounds lie your company really cares for their employees and you have supportive friends. Yay! I love to hear stuff like this.

    Lots of hugs and prayers going out to you!

    Lin

     

    Thank you Lin

    I think the kids will be ok. They have a better understanding now of what really is going on. We always kind of sheltered them when it came to my wifes cancer. I think it was the right thing at the right time to have the talk.

    As far as my workplace goes, they have been fantatic. When you have the vice president tell you "we take care of our own" . Well, I can't explain the feeling it was. There are so many kind and caring people there. I feel truly blessed.

  • lp1964
    lp1964 Member Posts: 1,239
    Dear Friend,

    You received a lot of good advise here and the only thing I'd like to add is to suggest a chemo sensitivity test. The oncologist and his lab is here in Long Beach California. They send you a kit and the only thing they need is a biopsy of living cancer cells in the kit shipped to them. In a few days they try single and combination of chemos directly on the cancel cells and they tell you exactly what works so you s don't have to go through months of treatments and side effects then find out that it did not work. It's not cheap: $4,000, but is the best chance of finding out what works.

    At least look up their website: rationaltherapeutics.com

    I really wish you the best possible outcome.

    Laz

  • UncleBuddy
    UncleBuddy Member Posts: 1,019
    rls67 said:

    Thank you Lin

    I think the kids will be ok. They have a better understanding now of what really is going on. We always kind of sheltered them when it came to my wifes cancer. I think it was the right thing at the right time to have the talk.

    As far as my workplace goes, they have been fantatic. When you have the vice president tell you "we take care of our own" . Well, I can't explain the feeling it was. There are so many kind and caring people there. I feel truly blessed.

    Great!

    Every family handles these things differently. It sounds like you guys did an awesome job. I also shelter my kids, we do it because we love them! :)

    You're very fortunate to have such a great company to work for. I wish you and your family the best. Stay positive. Hugs to you all.

    Lin

  • UncleBuddy
    UncleBuddy Member Posts: 1,019
    lp1964 said:

    Dear Friend,

    You received a lot of good advise here and the only thing I'd like to add is to suggest a chemo sensitivity test. The oncologist and his lab is here in Long Beach California. They send you a kit and the only thing they need is a biopsy of living cancer cells in the kit shipped to them. In a few days they try single and combination of chemos directly on the cancel cells and they tell you exactly what works so you s don't have to go through months of treatments and side effects then find out that it did not work. It's not cheap: $4,000, but is the best chance of finding out what works.

    At least look up their website: rationaltherapeutics.com

    I really wish you the best possible outcome.

    Laz

    Laz

    Is that the test that they do to see if you're KRAS wild or KRAS mutation, or is it a completely different test?

    Lin

  • lp1964
    lp1964 Member Posts: 1,239

    Laz

    Is that the test that they do to see if you're KRAS wild or KRAS mutation, or is it a completely different test?

    Lin

    Chemo test...

    The test you mention I believe is a genetic test where they check what kind of genes make up the cancer cell. There are other genomic test too that give us information about the cancer we have: is it inheritable etc. These test can tell you some information about whether a certain chemo may work or not, but very limited.

    The chemo sensitivity test doesn't look at only the genes, but it test the whole cancer's sensitivity to chemos. Clinically this is the best predictor now to see what may work.

    Laz

     

  • annalexandria
    annalexandria Member Posts: 2,571
    rls67 said:

    Thank you everyone.

    You have given me some great advice that i will be looking into. I am sorry, I forgot to mention the age of my kids. Our youngest is in his teens and the two older are in there early to mid twenties. Well, I sat down with them and explained what is happenning. It was the hardest thing I ever had to do. But I think they deserved to know. They seemed to have been in denial this past year. They didn't realize how serious there moms illness is. 

    On a positive note, I have many supportive friends at work. After telling them the news, I got called into the HR office and was told if we needed to travel for treatment to another city or state, they will help with the cost of travel and help with arrangements. How awesome is that! 

    I just want to thank all of you again. Even though I don't know you all personally,  I love you all. You folks are the best!

    I'm glad you told them.

    My two oldest are 22 and 18, and I think it's best for kids that age to have the full picture (in most cases).  When everything is upfront, you can all pull together and support each other.  The cancer journey is so hard, but at least you can hold each other up as you go along.

  • Sundanceh
    Sundanceh Member Posts: 4,392
    Very Sorry to Hear of This News....

    Words escape me sometimes at times like these. 

    I can say that I echo the sentiments in this thread from the other members of the community.

    Hearing of disappearing options is always sobering to say the least....I got that speech a few weeks ago myself.  It's never easy to hear.  But, I've decided there is not too much I can do but try what is available and go from there.  On the days, I feel good, I try and do what needs to be done.....on bad days, I got to bed until I feel good enough to get up and try some more.

    It's so frustrating for the patient.....but an equal or greater heartbreak to the spouse or caregiver as well. 

  • Cathleen Mary
    Cathleen Mary Member Posts: 827
    Sundanceh said:

    Very Sorry to Hear of This News....

    Words escape me sometimes at times like these. 

    I can say that I echo the sentiments in this thread from the other members of the community.

    Hearing of disappearing options is always sobering to say the least....I got that speech a few weeks ago myself.  It's never easy to hear.  But, I've decided there is not too much I can do but try what is available and go from there.  On the days, I feel good, I try and do what needs to be done.....on bad days, I got to bed until I feel good enough to get up and try some more.

    It's so frustrating for the patient.....but an equal or greater heartbreak to the spouse or caregiver as well. 

     
    My heart hurts for all of

     

    My heart hurts for all of you. Your children have a wonderful Dad. I echo all the words that have been offered.  Normal is overrated....don't even attemp it. Just BE.  Be present.  I am going to hope and pray that you all have much longer together than you can now imagine.

    We are all here for you.

    CM

  • rls67
    rls67 Member Posts: 127
    Chelsea71 said:

    My husband, Steve, passed

    My husband, Steve, passed away four months ago tomorrow.  He had liver and lung metastasis and fought super hard.  We went through hell together just as you and your wife have.  Steve was going to go on Stivarga.  At the last minute the onc changed his mind.  Said it wouldn't do any good and the liver likely couldn't handle it.  Unfortunately, Steve and I didn't have kids so I am not much help in that department.  Steve was my best friend and losing him was like losing an arm or leg.  Just wanted to let you know that I and many others understand the heartache your going through.  Stay strong and just keep moving forward, no matter what. Must keep putting one foot in front of the other.  One day at a time.  Maybe it would be a good idea to approach a counselor that works with children and get their opinion on how to handle it all with the kids.

     

    So so so sorry your all going through this.

    Chelsea

    Thank you Chelsea,

    I am so sorry for your loss. Not many friends or family members understand what we go through. You and alot of people in this forum do know what its like. Thank God for all of you. This board feels like a shelter in a storm sometimes. Thank you for your help.

     

  • Nana b
    Nana b Member Posts: 3,030

     
    My heart hurts for all of

     

    My heart hurts for all of you. Your children have a wonderful Dad. I echo all the words that have been offered.  Normal is overrated....don't even attemp it. Just BE.  Be present.  I am going to hope and pray that you all have much longer together than you can now imagine.

    We are all here for you.

    CM

    So sorry to hear this. I am

    So sorry to hear this. I am now at my 5 year mark and have a recurrence. I'm on Erbitux/Oxy/Xelolda.  if this doesn't work, pretty sure Folfri will be next, then who knows?  I think you were smart to talk to the kids. Give them time to really get close and love Mom.  At times, I think I'm forgotten.  I had a lot more attention the first round of chemo. :)

     

    Seriously though, life is tough,  I just buried my Mom on Sunday, and it doesn't get easier with age.  She was still my Mommy.  With time, I know the pain dulls enough to carry on.  

     

    My my best to you all. Praying for our Bodies, I think our souls are good. 

  • rls67
    rls67 Member Posts: 127
    Nana b said:

    So sorry to hear this. I am

    So sorry to hear this. I am now at my 5 year mark and have a recurrence. I'm on Erbitux/Oxy/Xelolda.  if this doesn't work, pretty sure Folfri will be next, then who knows?  I think you were smart to talk to the kids. Give them time to really get close and love Mom.  At times, I think I'm forgotten.  I had a lot more attention the first round of chemo. :)

     

    Seriously though, life is tough,  I just buried my Mom on Sunday, and it doesn't get easier with age.  She was still my Mommy.  With time, I know the pain dulls enough to carry on.  

     

    My my best to you all. Praying for our Bodies, I think our souls are good. 

    I am so sorry about your mom.

    I am so sorry about your mom. Your right, no matter how old you are, she will always be your mom. I am sorry to hear about your recurrence. I know you can beat it back again. Thank you for your kind words. I truly appreciate it.