New to boards, Need direction, Stage IV, Long post

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stricklinds
stricklinds Member Posts: 4
edited March 2014 in Colorectal Cancer #1
Hello!
I am new to this site, these boards, and this is my very first post. Please forgive my lack of knowledge with terminology, etc.

I have a couple of questions for you guys, and would love feedback, insight and suggestions.

Background:
I am 27 years old, and married to a great man. His sister is my best friend in the entire world, and she was diagnosed with leukemia five years ago this month (March 2005) at the age of 36. She is a single mom of two, and has been in complete remission from leukemia.

Last March (one year ago this month) she was scheduled to have a complete hysterectomy. She had been having severe pain in her abdomen, etc. She was frequently at MD Anderson (where she was treated for leukemia), she had tons of scans done, etc and they kept telling her that she had endometriosis in the extreme, hence the hysterectomy. They just completely missed it. Even her doctor at MDA apologized and told her that they had no idea, the signs were all there, it just didn't come together. This severe pain went on from about Thanksgiving of 2008 right up until her surgery (March 2009). A couple of days before her hysterectomy (surgery was going to be at MDA) they did more digging and relized they may be missing something. Everything clicked, and they told her that they were going to have a different kind of surgeon on hand, just in case.

She came out of surgery to find that she had stage 4 colorectal cancer and a colostomy. They removed what they could see and scheduled her to begin chemo in six-weeks. She began chemo (not certain of drug names, but the kind where she could open the freezer, or drink cold liquids), and began getting treated at MDA every other week. As of August 2009, I knew that she wasn't responding to the chemo. Because her body had been blasted with chemo in 2005 for leukemia they were worried about ability to respond to it. They took her case before a panel of Doctors at a conference in August to see if they had any ideas of what to put her on. Since then, I knew that they had been trying different types of chemo, drugs etc...but I didn't realize the extent of the situation.

We are very, very close. However, she has not been very open about her cancer and treatment schedule this go around. With leukemia she was very vocal, and very open. She told me that she scared herself to death with leukemia, doing research online, etc..and this time she just didn't want to know. She told me that to maintain her sanity, she just doesn't want to go there again. I respect her wishes. This is her body, her decision. But I am 100% behind her and she knows this. We have been very close for years, and are still very close.

So, last week I find out that she has known for the past six months that there was nothing more that MDA could do other than just try different things. The chemo hasn't been working and it has spread all the places this cancer goes, her body wasn't even able to take a full dose of chemo every two weeks. She has asked us to move her big family birthday party (her birthday is in June) up to next weekend. This makes me think that they gave her some sort of a timeline??? She did tell me that she has known for the past six months that it wasn't working, and she's now looking into alternative medicine. She lives in Houston, and has continued to work full-time, and is covered by her group medical plan (major medical policy, great insurance). I do not live in Houston, and I travel to spend time with her on the weekends. I have also been with her many, many times to get chemo at MDA, so this is just a huge shock. I am going to be with her this weekend, and I'm trying to gather all the info I can find. I feel like she thinks she doesn't have very much longer, which scares me so badly. I am the type of person to get all of the info I can, but I respect her way to dealing with this.

So, these are my questions:
She continues to work full-time but she is in no shape to keep on. Who do I call or what website do I look at to get information regarding insurance and cancer? She has been fully covered and has amazing insurance, but if she cannot work, then she cannot continue to keep her benefits with her employer. What options does she have? Her employer has less than 20 employees so Cobra doesn't apply. The alternative treatment she is looking into doesn't accept insurance so she's having to make a lot of tough decisions.

Also, do I approach this subject without her bringing it up first? She has shared bits and pieces with me periodically, but not a straightforward this is the deal conversation. She hasn't with anyone in our family (not even her and my husband's parent) and we are all very close. I'm very worried, i'm probably the closest with her, and I have a feeling that she knows a lot more information than what she has shared, but isn't it her right to keep it to herself?

I just need direction. Somewhere to go, or to call, or research to see if there's anything I can do to help. Thank you all for reading, letting me get it all out and your help/advice...

Lindsay

Comments

  • lcarper2
    lcarper2 Member Posts: 635 Member
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    stricklinds
    Sorry to hear about your sister but welcome to our room. It sounds like your sister has alot to deal with but it also sounds like she has kept things from you hoping to spare you of what she is dealing with. Does she have any treatments lined up or trials she is looking at if not look here on this site for info on some trials. This is a very good place to research info. also just let her know that you are there for her in any way she needs you. You didn't mention her husband but if he is in the picture talk to him and see if he knows something you don't. The hardest thing for any family member is to watch and feel helpless but just loving her and holding her when she crys is a big thing to do. Just asking her to open up and share her feelings is a great step in the right direction this is not an easy job but suporting her in what ever she does is helpful I will put your family on my prayer list...


    louann
  • WinneyPooh
    WinneyPooh Member Posts: 318
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    lcarper2 said:

    stricklinds
    Sorry to hear about your sister but welcome to our room. It sounds like your sister has alot to deal with but it also sounds like she has kept things from you hoping to spare you of what she is dealing with. Does she have any treatments lined up or trials she is looking at if not look here on this site for info on some trials. This is a very good place to research info. also just let her know that you are there for her in any way she needs you. You didn't mention her husband but if he is in the picture talk to him and see if he knows something you don't. The hardest thing for any family member is to watch and feel helpless but just loving her and holding her when she crys is a big thing to do. Just asking her to open up and share her feelings is a great step in the right direction this is not an easy job but suporting her in what ever she does is helpful I will put your family on my prayer list...


    louann

    She can take a leave of absence
    Lindsey,
    To keep her insurance have her take a leave of absence from work her work insurance will still cover her since she is still on payroll. 9 atleast that is how mine is working.

    She can also quailfy for disability, they will go back to the date that the cancer started to interfer with full time work. Stage 4 get it automatically and your put on the fast track.

    As far as treatment, i don't know but if she wants to take a break from work this may help

    Winnie
  • stricklinds
    stricklinds Member Posts: 4
    Options

    She can take a leave of absence
    Lindsey,
    To keep her insurance have her take a leave of absence from work her work insurance will still cover her since she is still on payroll. 9 atleast that is how mine is working.

    She can also quailfy for disability, they will go back to the date that the cancer started to interfer with full time work. Stage 4 get it automatically and your put on the fast track.

    As far as treatment, i don't know but if she wants to take a break from work this may help

    Winnie

    leave of absence & disability
    Okay, i'll see who I can talk to. She has been diagnosed with Stage 4, but I thought you had to wait a year to get placed on disability?
  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
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    Wow Lindsay
    What a touching story and it sounds like you are obviously very close to your sister-in-law; what a wonderful relationship that you have.

    Here are a couple of thoughts:

    It sounds like she was on Folfox from the cold sensations you describe - I'm sure she was on Folfiri, 5fu, maybe Xeloda or Avastin or drugs in that classification. Apparently they have stopped working effectively. These are the hardcore drugs that we are all given, so if the big guns stop working or did not work, then it becomes a matter of clinical trial and or alternative approaches. I'm wondering if she would be a candidate for any type of other surgical procedure like RFA or CyberKnife - you said it had spread, so that probably means to the liver and/or lung.

    Erbitux is another good treatment option if you test negative for KRAS mutation.

    RFA and CyberKnife are good for the liver...CyberKnife can be done on the lung and so can the DaVinci robot surgical system for tumor removal in the lung.

    Also for the liver, there is HAI, Hipec, and chemo emobilization that she could discuss with her onc. Quite possibly she might qualify for any or all of these procedures. Not knowing her history makes it hard to know, but these are a few buzzwords that she or her advocate could discuss with her doctors.

    Now, her keeping this info sort of private. Tough call here - I am an advocate that we all have a right to choose how far we want to fight in our individual battles - this is absolutely the patient's rights no matter what. Only that person can decide whether their mind and body can take the pounding necessary in a cancer battle. There is no right or wrong answer here - only what they can do. The mind has to be right to fight - that's the #1 key element in the battle....one must believe and be willing or the body simply won't follow. So, that's a tough call.

    You can certainly talk to her - I would just initiate a conversation openly and see what she says - tell her you love her and value her and you want her to be around for you and your family - and that you will support her no matter which way she decides to go. As painful as that is, we must abide by what the patient wants.

    I think I would GO AHEAD and move her birthday party up as she requests...I'm thinking you are right and that she knows something that nobody else knows. And while she is still able to do it makes it a good thing to do - 4 months down the line and she may take a bad turn and be to ill to have it or something more dire could happen preventing the party. This would give everybody a chance to get together and build a lasting memory.

    As for her work, I admire that she is still hard at it - she has a strong work ethic. However, it seems to me that she could go out on disability and get at least 60% of her pay while she is on medical leave. Programs vary but they start with short term and move to long term. Policies can pay anywhere between 60-100% depending on the company.

    This would give her the rest she needs while still drawing some income. She is also protected job wise with the FMLA act - Family Medical Leave Act, which guarantees the same position you left for 3 months - at 6 months she might be in a different position but has to still be employed by her employer - that's the law.

    It's such a difficult thing being on the outside looking in - maybe copy these posts and take them to her and see if anything we say will help make a difference. Try and motivate her to keep on fighting if she is physically and mentally able.

    If she decides she has had enough, then just be the good sister-in-law that you've always been and just be there when you can - in person, by phone, or email.

    Just love her - there are just no easy answers to Cancer.

    Thank you for your post and opening your heart to us - I wish you all the best and hope this info has helped you somewhat - look forward to hearing more if you can find out more.

    -Craig
  • lcarper2
    lcarper2 Member Posts: 635 Member
    Options
    Sundanceh said:

    Wow Lindsay
    What a touching story and it sounds like you are obviously very close to your sister-in-law; what a wonderful relationship that you have.

    Here are a couple of thoughts:

    It sounds like she was on Folfox from the cold sensations you describe - I'm sure she was on Folfiri, 5fu, maybe Xeloda or Avastin or drugs in that classification. Apparently they have stopped working effectively. These are the hardcore drugs that we are all given, so if the big guns stop working or did not work, then it becomes a matter of clinical trial and or alternative approaches. I'm wondering if she would be a candidate for any type of other surgical procedure like RFA or CyberKnife - you said it had spread, so that probably means to the liver and/or lung.

    Erbitux is another good treatment option if you test negative for KRAS mutation.

    RFA and CyberKnife are good for the liver...CyberKnife can be done on the lung and so can the DaVinci robot surgical system for tumor removal in the lung.

    Also for the liver, there is HAI, Hipec, and chemo emobilization that she could discuss with her onc. Quite possibly she might qualify for any or all of these procedures. Not knowing her history makes it hard to know, but these are a few buzzwords that she or her advocate could discuss with her doctors.

    Now, her keeping this info sort of private. Tough call here - I am an advocate that we all have a right to choose how far we want to fight in our individual battles - this is absolutely the patient's rights no matter what. Only that person can decide whether their mind and body can take the pounding necessary in a cancer battle. There is no right or wrong answer here - only what they can do. The mind has to be right to fight - that's the #1 key element in the battle....one must believe and be willing or the body simply won't follow. So, that's a tough call.

    You can certainly talk to her - I would just initiate a conversation openly and see what she says - tell her you love her and value her and you want her to be around for you and your family - and that you will support her no matter which way she decides to go. As painful as that is, we must abide by what the patient wants.

    I think I would GO AHEAD and move her birthday party up as she requests...I'm thinking you are right and that she knows something that nobody else knows. And while she is still able to do it makes it a good thing to do - 4 months down the line and she may take a bad turn and be to ill to have it or something more dire could happen preventing the party. This would give everybody a chance to get together and build a lasting memory.

    As for her work, I admire that she is still hard at it - she has a strong work ethic. However, it seems to me that she could go out on disability and get at least 60% of her pay while she is on medical leave. Programs vary but they start with short term and move to long term. Policies can pay anywhere between 60-100% depending on the company.

    This would give her the rest she needs while still drawing some income. She is also protected job wise with the FMLA act - Family Medical Leave Act, which guarantees the same position you left for 3 months - at 6 months she might be in a different position but has to still be employed by her employer - that's the law.

    It's such a difficult thing being on the outside looking in - maybe copy these posts and take them to her and see if anything we say will help make a difference. Try and motivate her to keep on fighting if she is physically and mentally able.

    If she decides she has had enough, then just be the good sister-in-law that you've always been and just be there when you can - in person, by phone, or email.

    Just love her - there are just no easy answers to Cancer.

    Thank you for your post and opening your heart to us - I wish you all the best and hope this info has helped you somewhat - look forward to hearing more if you can find out more.

    -Craig

    leave
    also if she has short term disibility on her insurance at work she can take that and get paid I understand if you have cancer you get approved asap for SSDIthere are options for her to look for...
  • sfmarie
    sfmarie Member Posts: 602
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    Coverage
    She can take a leave of absence under the FMLA act and will continue to receive coverage for her benefits. If she takes STD or LTD, you should continue to be covered under COBRA, although you would have to pick up the cost of the premiums. I am not sure if the Obama act us still under effect, but if it is, you could qualify for your employer to cover 60% of the cost of your premiums for I think up to 9 months.

    Your sister-in-law will open up to you when she is ready. You may want to simply state, I am here for you whenever you need me and I am a great listener. As a caregiver, I know how hard it is. But I also think you need to give people the space and time to share when they are ready.

    You are a GREAT support to your sil. She is lucky to have you.
  • khl8
    khl8 Member Posts: 807
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    sfmarie said:

    Coverage
    She can take a leave of absence under the FMLA act and will continue to receive coverage for her benefits. If she takes STD or LTD, you should continue to be covered under COBRA, although you would have to pick up the cost of the premiums. I am not sure if the Obama act us still under effect, but if it is, you could qualify for your employer to cover 60% of the cost of your premiums for I think up to 9 months.

    Your sister-in-law will open up to you when she is ready. You may want to simply state, I am here for you whenever you need me and I am a great listener. As a caregiver, I know how hard it is. But I also think you need to give people the space and time to share when they are ready.

    You are a GREAT support to your sil. She is lucky to have you.

    Just to let you know that if
    Just to let you know that if the employer has less than 50 employess within a 50 mile radisu, FMLA is not an option, the company does not have to comply
    Kathy
  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
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    khl8 said:

    Just to let you know that if
    Just to let you know that if the employer has less than 50 employess within a 50 mile radisu, FMLA is not an option, the company does not have to comply
    Kathy

    Interesting
    Thanks Kathy

    Learning something new every day - I was not aware of that.

    -Craig
  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
    Options
    State options?
    Some states have a catastrophic illness insurance pool. It varies from state to state as to how it works but am sure sis-in-law would qualify.

    Are there any non-profit hospitals in the area where she could receive her treatments, etc? If so she may qualify for "charity" and at least be relieved of those expenses.

    Bottom line is to share the financial concerns with docs and treatment centers. They may be able to direct her to additional financail support for the medical costs.

    Marie
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    Options
    Sorry
    Lindsay,

    I'm so sorry about your sister in-law. Others have given you helpful advice, and I don't have anything better to add. I just want to let you know that I'm praying for your sister in-law and hope things will get better for her.

    *hugs*
    Gail
  • JR
    JR Member Posts: 139 Member
    Options
    SSDI
    SSDI should be a slam dunk. I am also stage 4 and they back dated my SSDI application to my surgery date, that was 8 months prior. 5 month waiting period had already passed and I received a check for 3 months back pay.

    Lindsay, you are a great friend and sister-in-law. As hard as it is to see this happen to a loved one, you have to support her decisions. I wish you both all the best.

    John