topic Re: The sadness is exhausting UPDATE in Community Chat

The sadness is exhausting UPDATE

Abrowneyegirl — Tue, 10 Oct 2017 20:27:00 GMT

There is some good news on the horizon:

Our loved one with the ALS diagnosis is a strong possibility to be approved for a VERY new (in this country) medicine that will slow the progression of the ALS. It is the first drug in decades showing any promise. The downside is the tx costs almost $200,000 a year and insurance will pay for 80%.

The sad news is we have 1 loved one in the hospital now with an infection related to his cancer. ugghhh.

and today I was witness to a horrific car accident this morning. Single car accident -went off the road. Police checked in with me just recently as part of the investigation. The only thing they could tell me was still in surgery and that it was very, very bad. My heart aches for his loved ones.

I am more thankful for every blessing I have right now........

Re: The sadness is exhausting UPDATE

viva923 — Tue, 10 Oct 2017 20:53:46 GMT

oh my mememe I am so very sorry to hear of the news you have had to witness as of late.

so little I can say to allveiate the heavy heart you are experiencing now. Just know I am here.

Re: The sadness is exhausting UPDATE

Katcat1 — Tue, 10 Oct 2017 21:15:53 GMT

@Abrowneyegirl, I receive my biological medicine free through the manufacturer of the drug and a foundation. I have been doing this for over 6 years. My medicine is in the thousands but not nearly as much as $200,000. Contact the manufacturer to see if they offer any type of program or have foundations.

Re: The sadness is exhausting UPDATE

Lindsays Grandma — Tue, 10 Oct 2017 23:32:15 GMT

@Katcat1 wrote:
@Abrowneyegirl, I receive my biological medicine free through the manufacturer of the drug and a foundation. I have been doing this for over 6 years. My medicine is in the thousands but not nearly as much as $200,000. Contact the manufacturer to see if they offer any type of program or have foundations.

I am so glad you passed this information on to mememe. Many people do not know what is available out there. When my dear friend was fighting breast cancer she received medication from a manufacturer which would have cost her $6,000 a month.

Re: The sadness is exhausting UPDATE

roeroe1005 — Wed, 11 Oct 2017 00:20:18 GMT

my beautiful cousin, Michele, who was also my godchild, died of ALS complications at the age of 44 three years ago. To learn that there may be anything to slow the progession is very good news to me.

Sending prayers for your family members.

Re: The sadness is exhausting UPDATE

qualitygal — Wed, 11 Oct 2017 09:28:24 GMT

I believe you have angels surrounding you.

Re: The sadness is exhausting UPDATE

SahmIam — Wed, 11 Oct 2017 16:52:32 GMT

@Abrowneyegirl Strength and hugs to you.

Regarding the drug: my son was on an experimental drug that was $1500 for 3 doses ( 2 doses a day); he was to take it for a month...NOT covered by insurance. I found out that only ONE company makes it in the US for US and Canada and.....it was 10 MINUTES FROM MY HOUSE. I called them and by going directly to them, I was able to receive a HUGE discount. In the end, the drug didn't help but at least we and his medical team were able to eliminate this drug and others like it from his care plus....it told his doctors things about his medical condition. To us, that was still a win.

Whenever there is an expensive drug that is not or only partially covered by insurance, I now contact the company directly- I have yet to not receive some type of assistance from the company directly. I wish you all the best and those dear to your heart.