Received bad news yesterday

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Comments

  • lp1964
    lp1964 Member Posts: 1,239 Member
    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 Member

    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 Member
    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.

  • UncleBuddy
    UncleBuddy Member Posts: 1,019
    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. 

    Nana

    I am so sorry about the loss of your mom. It never gets easy. My mom is gone 8 years and I still miss her everyday. I have so many things I wish I could tell her.

    I'm sorry that your cancer has returned! I hope you have an easy time with the chemo.

    Lin

  • suzanne-yes
    suzanne-yes Member Posts: 24
    Sending good thoughts your way!

    You have already received a great number of wonderful thoughts and helpful information.  Have you looked at getting a second opinion and does your wife have a multidisciplinary team evaluating her treatment plan?  It's important to have a surgeon, radiation oncologist, and interventional radiologist weigh in on other possibiliites - not only for treatment options but in help with keeping her symptoms under control.  There is no crystal ball and her new treatment may work well.  if it doesn't then it is helpful to know what your next steps will be.  Clinical trials possible?  What about revisiting one of the previous chemo regimens?  There are studies that show revisiting a regimen after a break may provide favorable results. 

    My treatments have been mixed, matched, and revisited!  Some with better response than others.  I'm thinking of you and hoping that as you test the waters of the new normal you find some peace and direction. 

    Suzanne Lindley

  • danker
    danker Member Posts: 1,276
    Bad News

    I know exactly how you feel!  My wife has been in a  nursing home for the last  14 moths with alzheimers disease.  Her Doctor did't expect her to make it till this Christmas.  She obviously won't make it the next one.  I see her 4-6 times a week.  Some times she knows who I am, and other times not.  Watching her deteriorate is indeed difficult. My only consolation is remembering the good times we had in our 56 year marriage.  Good luck to you.!!!

  • jen2012
    jen2012 Member Posts: 1,607 Member
    How are things rls?
    How are things rls?
  • Chelsea71
    Chelsea71 Member Posts: 1,169
    jen2012 said:

    How are things rls?
    How are things rls?

    I have been wondering about

    I have been wondering about you and your wife, as well.  Hope things are okay.