Terrified of this cancer and how to get treatments

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Oomawerd
Oomawerd Member Posts: 16
edited May 2017 in Family and Family Planning Matters

I am contemplating chemo, TCH every 3 weeks for 6 and then herceptin alone to total a year, but Ido not how to do it with a 16 year old with schizo affective disorder, borderline personality disorder.

She was just released from her 8th 14 day stay at a mental health facility.

Last day of school is May 26, 2017.

Oncologist wants me start chemo within 2 weeks. Oncologist told me my odds of reoccurrence are 10% without chemo, and 7% with chemo.

What to do! They won't discuss financial costs with us until i agree to treatments.

Like everyone else, we cannot afford it. Already had 4 surgeries since May of 2016. My husband also had surgery in 2016.

I can't leave her at home alone on treatments days. Don't know if it would be harmful for her to take her with me or even if they would let me.

Don't know if i could still manage her myriad of meds while in chemo.

My husband works a stressful job and is really not supposed to take off work during this time of year.

Do the chemo places have after 5 appts? Or are they strictly a 9 to 5 business?


I am having a very difficult time thinking that i am subjecting my husband with financial ruin just fir a 3% decrease of reoccurance.

We have no family or friends close by. No assitance with the grand daughter financial or anything else.

Sorry for being a cry baby ir alarmist, but I can't help not having control of this.

I feel like another cow in a feed lot. Just waiting to be pulled through the barn door to an unkown fate and paying dearly for it.

If you mention money, costs etc, eveyone says don't think about that, your life is priceless blah blah.

Well who the heck does not worry about it?


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  • Oomawerd
    Oomawerd Member Posts: 16
    edited May 2017

    lol, i am not sure if i created a new stand alone topic under family matters or replied.

    I will get the hang of this soon i hope.

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  • TahoeDreams
    TahoeDreams Member Posts: 6
    edited May 2017

    Oomawerd, I'm so very sorry for the added stress regarding uncertainty as I cannot believe they will not fully disclose treatment information!! That's rotten beyond conprehension!! I don't have a husband or children but I do have 6 dogs that depend on me and I'm self employed so if I'm not physically working I have no income. I completely understand the financial issue!!! I wish I had advice or answers for you.

    My treatments have been paid for my Medicaid since I don't have money or health insurance. The financial counselors were so proud to say "we have a $1,000 grant that you'll get thru The Alight Foundation to help out financially". Well that was all well and good except my treats were slated to last 8 months total and I needed $3k a month to remain in my home and pay the monthly bills. So while looking at $24k needed just to avoid homelessness, the grant offered didn't do much to quell my fears and stress!!! There were a number of other grants that can be applied for but ..... I applied back in February and still haven't received any feedback yet. Too bad I can't behave that way with my creditors or landlord or utility companies!!!! It's beyond stressful!!! Only thru the love and generosity of multiple friends, family and clients donating privately and thru a fundraiser that I did via Medgift.com, have I been able to survive thus far. I didn't qualify for short term disability because I wouldn't be out of work for a minimum of one year. Additionally I had to work as much as possible even when I was horribly sick during chemo since they couldn't get my med cocktail just right to prevent most of the side effects. It was so awful that I stopped at 5 out of 6 infusions because I was miserable and had no quality of life.

    Please don't apologize for venting and sharing here. That's what this forum is all about. Know that you're not alone and your fears and concerns are understood and we are empathetic to the challenges involved!! Again, I'm so sorry that I don't have answers or specific guidance 😔

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  • TahoeDreams
    TahoeDreams Member Posts: 6
    edited May 2017

    why was my post removed by the community

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  • Oomawerd
    Oomawerd Member Posts: 16
    edited May 2017

    i have no idea why your response was removed, but i read it in the email notice. I appreciate your comments.

    Dang, you situation brwaks my heart. It makes so incredibly sad for all cancer patients.

    Makes me angry too that in other countries the costs if treatments are so much less.

    Hugs and Blessings.

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  • LisaAlissa
    LisaAlissa Member Posts: 1,092
    edited May 2017

    Hi Oomawerd,

    I'm so sorry that you're having to deal with this on top of your other challenges.

    Does your cancer center have a nurse navigator or a social worker? A financial counselor? They may well be able to help you find resources to help.

    Daughter: Perhaps an "after school" sort of program for your 16-year old? Day camp for the summer that will keep her occupied while you have treatment? A volunteer opportunity for her at your cancer center on days you have treatment?

    You may also want to find help for the days post-chemo when you're not up to doing much (exhaustion or whatever).

    Financial Assistance: That they won't talk to you about the finances until you agree to do it. So go ahead and "agree"...you can always change your mind. There are assistance programs that may be able to help from some of the drug makers. The ones I've seen (for my father's RA drugs) will make you share financial information, etc. But given all of the surgeries/drugs, etc., you may well qualify for free or substantially discounted drugs. Often your doc has to send a letter of "medical necessity." They may well not want to start such messing around until you've committed.

    If they still won't talk to you about costs, ask to speak with the clinic's manager/business office. There's someone in there that will be glad there's a patient who wants to find out how they're going to manage the costs.

    Med management: Not sure what aspect is troubling you. Ordering/picking up meds? Organizing the meds into those that are taken at the same time? Reminding your daughter to take them? There are different things that might help, if we knew more about the challenges.

    For instance, an Apple watch could remind your daughter that it's time to take meds. But that may not address the challenge you face.

    Do you belong to a church? or other social group? Often they'll be willing to organize the help you need.

    Can you tell us a little bit more?

    Hang in there!

    LisaAlissa

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  • Icietla
    Icietla Member Posts: 1,265
    edited May 2017

    Other Special Needs Camps

    The following camps are for kids in Texas with other diagnoses and special needs. Click the camp's name for more information, or scroll down.

    Source:

    http://dshs.texas.gov/cshcn/Summer-Camps.aspx


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  • Oomawerd
    Oomawerd Member Posts: 16
    edited May 2017



    THANK YOU for the list.

    My grandaughter has schizo affective disorder as well as manic and border line personality disorder. She has tics as well. On several new meds. She was just released from her 9th stay at a mental health facility in less then 2 years, on May 9th 2017

    I will have to google camps for teens with those issues and meds.

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