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Lois R

Off topic from fashion.......

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Hi...we had an old thread that was put in by Laura (Community Manager

of CC) but it is really old so thought I would start a new one since most

everyone on here is usually helpful and friendly:) and sometimes we

just need to vent.......

 

I am asking if ya'll could put in a good word for me (to whoever you

would normally ask)....this week I was diagnosed with a chronic

form of Leukemia....it is treatable with a pill.......albeit a VERY, VERY

expensive pill:eek::rolleyes:...... I am having a bone marrow biopsy

on Monday so I will have more answers after that but the Doc did tell

me the pills can range from 4 grand a month to 8 grand a month:eek:

Yes, I have insurance from work but what happened to affordable

meds?:confused:....

Oh, the good part of this is the Doc said this form of cancer is the form

to get (if you are going to get it at all)......that it is not terminal.

 

But it is still a shock and any good thoughts would be appreciated.

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Oh, Lois I'm so sorry you have to go through this. I don't know you, but you come across as such a genuinely kind & thoughtful person :)

 

Yes I'll be putting in a good word for you, but I think that whatever powers that be probably have you on their 'good' list already.

 

Best thoughts & wishes for strength to deal with your new situation.

 

Debbie

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Hi Lois -- you were one of the first people I remember "meeting" on this site, and you are always so helpful and friendly -- as well as a fellow solo traveler.

 

I wish you all the best and will keep you in my thoughts as you go through this.

 

It's amazing that they can treat this with a pill. It may be expensive, but isn't it great that it is available for you, now that you need it.

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Oh no!!! "Putting in a good word" for you. Email me ANY time you need to vent, rant or just talk.

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Thanks girls......I really appreciate it:)

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Hi Lois -- you were one of the first people I remember "meeting" on this site, and you are always so helpful and friendly -- as well as a fellow solo traveler.

 

I wish you all the best and will keep you in my thoughts as you go through this.

 

It's amazing that they can treat this with a pill. It may be expensive, but isn't it great that it is available for you, now that you need it.

 

Hi Cynthia....it is great but not sure what is going to happen if it is really

more than I can afford to pay:eek:....out of pocket will be my deductible

and 20%...Blue Cross pays 80%......

 

I will just have to wait and see what happens on Monday.

Edited by Lois R

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And you want to hear a part of left out......I woke up Tuesday night

with a HORRIBLE, HORRIBLE pain on my right side......near the groin

area......it was a kidney stone:eek:......I had to drive myself to the

emergency room........went in with that, came out with cancer......

they did blood work and my white count showed 180,000:eek:.....

the normal white count should be between 7,000 and 11,000..........

 

I don't wish a kidney stone on anyone......it was the worst pain

I can remember........you can't lay still.

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Ah Lois, double whammy. Hopefully it's not as expensive as you've been quoted. I concur,kidney stones are immensely painful. Hope you feel better quickly

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So sorry to hear this Lois. Don't get ahead of yourself about the cost until you get the results of the biopsy on Monday. Fortunately, the emergency people were diligent and didn't just treat the kidney stone and send you home. Regardless what a shock for you! As much as you like to travel thank goodness you were at home. Please let us know how you get on next week! Sending thoughts and prayers your way. Take good care of yourself!

Edited by Cancun01

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Lois, i am so sorry to hear you are having to go through this. I am glad to hear that it can be treated as a chronic illness though and allow you to live long term. :)

 

Cancer meds can definitely be very expensive. One of the drugs I was on for 2 years was 9k a month (is the one that turned my hair pure white). The good/bad news is that you'll reach your out of pocket max on it and will know how much you'll have to pay out for the year. I appreciate knowing that it will always be 6k for the year and we have it worked into the budget now.

 

Once you have the actual name of the drug you can apply for financial assistance with the drug manufacture since you have private insurance. Talk to your doctor, they may already do this on your behalf. If not is fairly easy to do yourself if you know the manufacturer. Often they will knock the cost down to barely anything until you hit a max amount with them for the year. This can be very helpful especially in the first year.

 

I've been battling cancer for 3.5 years now (unfortunately terminal) so I have a lot of experience with this. If you ever need to vent or rant or have questions about dealing with all of this feel free to hit me up. If you're on Facebook you can find me as sherilyn70 in a people search.

 

Sent from my Samsung Galaxy 7 edge using Tapatalk.

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So sorry, yes, the meds are expensive, but you are lucky they are available. I have gastric cancer, and it has spread to my liver, no telling how many cruises I have left in me.

Prayers for your living a long, long, long, time.

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So sorry to hear this Lois. Don't get ahead of yourself about the cost until you get the results of the biopsy on Monday. Fortunately, the emergency people were diligent and didn't just treat the kidney stone and send you home. Regardless what a shock for you! As much as you like to travel thank goodness you were at home. Please let us know how you get on next week! Sending thoughts and prayers your way. Take good care of yourself!

 

Thanks so much....yes, the ER folks were really nice.

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Lois, i am so sorry to hear you are having to go through this. I am glad to hear that it can be treated as a chronic illness though and allow you to live long term. :)

 

Cancer meds can definitely be very expensive. One of the drugs I was on for 2 years was 9k a month (is the one that turned my hair pure white). The good/bad news is that you'll reach your out of pocket max on it and will know how much you'll have to pay out for the year. I appreciate knowing that it will always be 6k for the year and we have it worked into the budget now.

 

Once you have the actual name of the drug you can apply for financial assistance with the drug manufacture since you have private insurance. Talk to your doctor, they may already do this on your behalf. If not is fairly easy to do yourself if you know the manufacturer. Often they will knock the cost down to barely anything until you hit a max amount with them for the year. This can be very helpful especially in the first year.

 

I've been battling cancer for 3.5 years now (unfortunately terminal) so I have a lot of experience with this. If you ever need to vent or rant or have questions about dealing with all of this feel free to hit me up. If you're on Facebook you can find me as sherilyn70 in a people search.

 

Sent from my Samsung Galaxy 7 edge using Tapatalk.

 

 

Thanks for the kind words and helpful things about the meds and I didn't

know you were terminal.......I am sorry:(......

 

I also have AFLAC (besides my main insurance)....I will do as you

suggest about the manufacturer too...I should know more next week.

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Thanks for the kind words and helpful things about the meds and I didn't

know you were terminal.......I am sorry:(......

 

I also have AFLAC (besides my main insurance)....I will do as you

suggest about the manufacturer too...I should know more next week.

Yes, I've reached that point where we're on one last hail mary chemo in 3 weeks... if that fails then I'm starting a hospice plan. Still trying to get some more cruises in though. :)

 

Sent from my Samsung Galaxy 7 edge using Tapatalk.

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So sorry to hear this Lois. Don't get ahead of yourself about the cost until you get the results of the biopsy on Monday. Fortunately, the emergency people were diligent and didn't just treat the kidney stone and send you home. Regardless what a shock for you! As much as you like to travel thank goodness you were at home. Please let us know how you get on next week! Sending thoughts and prayers your way. Take good care of yourself!

 

Thanks:).....I will keep you posted. Guess sometimes things can go round

and round in the mind:eek:....and you are right, I could have been

away and who knows what could have happened.

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Yes, I've reached that point where we're on one last hail mary chemo in 3 weeks... if that fails then I'm starting a hospice plan. Still trying to get some more cruises in though. :)

 

Sent from my Samsung Galaxy 7 edge using Tapatalk.

 

I have a cruise booked for October and I am going on it with my sister.:)

After that, I have a short weekend cruise with a group of friends in

November......those are the only 2 I have booked and will then see

how things go.

 

My best thoughts are with you too:)

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Lois, I send you my very best wishes. I'm so sorry to learn you have to go through this ordeal. Please keep us informed of your progress when you feel able. We are all rooting for you.

 

Thanks so much:)

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Lois.... Sending lots of prayers and hugs your way that everything will we ok!!

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I hope you write your state and federal politicians to vote in favor of the Patients' Access To Treatment Act. Many formerly very deadly conditions now have treatments that allow a fairly long life but the expense of all the background research companies need to recoup but as others have said they often cut the co-payment for the patient. I am happy they found this before you started feeling the effects of, I assume, CĹL. The new medications are truly wonderful drugs. I lost my brother at 16 to ALL back in 1977 when only 4% made it to 5 years but now that is 86% and growing. CĹL, well, you are Lois! You have this in the bag! Shake your fist at this nasty stuff and keep on cruising! My thoughts are with you and all those bravely facing cancer.

Sue

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Sending hugs and good thoughts. Use the financial assistance from the pharma company if offered. It has saved me tens of thousands of dollars for my auto immune condition.

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So very sorry to hear that you have to go through this! My thoughts and prayers are with you Lois, as you enter this new phase of your life. Here on CC you are the epitome of the strong, independant woman, living out the life of many peoples' dreams. Keep that strength as you learn how to incorporate your new reality into your day-to-day life. And also remember that you have MANY friends here at CC ready and willing to give you all the emotional support you need on those days when you just can't quite wrap your hands around your own inner strength. ;)

 

To Lois, sherilyn70, dulcimergirl, and anyone/everyone here on CC who is dealing with Cancer...“The human spirit is stronger than anything that can happen to it.” – C.C. Scott

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You girls are awesome:)....thanks for all the good information and kind

words.

 

I will speak with the Doc tomorrow for sure about the drug company,

the pills and hopefully they will give me price break on them.

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Hi, Lois

 

Sorry you have to go through this.

 

My dh was put on a pill that would have cost $900 a month. Not as high as what your medication is, but still high.

 

Our doctor gave us a form (from the drug manufacturer) to fill out on-line and the prescription now costs us $4.00 a month. Don't worry about the meds until/unless you have to. Ask for help as to what to do from your doctor.

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Hi, Lois

 

Sorry you have to go through this.

 

My dh was put on a pill that would have cost $900 a month. Not as high as what your medication is, but still high.

 

Our doctor gave us a form (from the drug manufacturer) to fill out on-line and the prescription now costs us $4.00 a month. Don't worry about the meds until/unless you have to. Ask for help as to what to do from your doctor.

 

Thanks so much:).....4.00/month? From 900.00? I would take 900.00

a month from $4000.00........

But certainly If I can get it down to double digits per month...well,

that would be the ultimate.

 

But as many of you have said, stressing about the $$$ is not going

to do anything for me at this point.

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Lois,

I am so sorry to hear you are going through this. Sending you love, light and all good thoughts for the highest outcome. You have been a light to so many of us on these boards, I want to thank you for that. We still have plenty of time to get to sail together!

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Lois-- Always enjoyed reading your posts. Please stay stress-free as possible.

 

 

Sent from my iPhone using Forums mobile app

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I just did a double check to see what the discount was for my Votrient. It took a 9k a month drug down to $25. I think you'll be pleasantly surprised.

 

This is for drugs by Novartis.

http://copay.novartisoncology.com

 

Sent from my Samsung Galaxy 7 edge using Tapatalk.

Edited by sherilyn70

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I just did a double check to see what the discount was for my Votrient. It took a 9k a month drug down to $25. I think you'll be pleasantly surprised.

 

This is for drugs by Novartis.

http://copay.novartisoncology.com

 

Sent from my Samsung Galaxy 7 edge using Tapatalk.

 

WOW....I had no idea about this stuff....thank you:)

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A BIG THANK YOU again........after clicking on that link, I decided to

use my friend GOOGLE:)....I didn't know about the different companies/

foundations that help with financial assistance for meds.....

 

One is the American Cancer Society and they have links for Prescription

Drug Assistance programs too.

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Lois,

I am so sorry to hear about your health issues. I'll add you to my daily prayer list - every little prayer helps, I truly believe. We all must rely on the kindness of strangers in our lives.

If it comes to needing that obscenely expensive meds, the ladies here have offered some valuable information on those drug companies. I have not had to deal with a catastrophic illness, but my BFF is dealing with MS. She has been able to get reduced-pricing assistance on some of her meds also. So, it is possible. And, think about getting a financial planner to help come up with a new plan to adjust with the new financial hits you will be taking.

 

Hoping for a positive outcome for you!

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Lois,

I am so sorry to hear about your health issues. I'll add you to my daily prayer list - every little prayer helps, I truly believe. We all must rely on the kindness of strangers in our lives.

If it comes to needing that obscenely expensive meds, the ladies here have offered some valuable information on those drug companies. I have not had to deal with a catastrophic illness, but my BFF is dealing with MS. She has been able to get reduced-pricing assistance on some of her meds also. So, it is possible. And, think about getting a financial planner to help come up with a new plan to adjust with the new financial hits you will be taking.

 

Hoping for a positive outcome for you!

 

Thanks for the kind words:)...as for a financial planner? I am the type

of person who is pretty frugal...my monthly expenses are low (thankfully)

I have no car payment or mortgage payment (my condo is paid for)

so not much I would have to give up (well, vacations/cruises would be

put on the back burner of course). But thank you for the suggestion:)

 

Oh, I will definitely be reaching out for the financial aid on the drugs though!

Edited by Lois R

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