BeansMama - I'm still kicking (butt that is)

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BeansMama
Posts: 959
Joined: Thu Jan 28, 2016 1:38 am
Location: North Carolina

Re: BeansMama - I'm still kicking (butt that is)

Postby BeansMama » Tue Aug 22, 2017 12:59 pm

Maia wrote:
BeansMama wrote:

Insurance is being a pain about paying for my Keytruda so the battle is on with them. My oncologist is quite peeved as we have proof it was approved then all of a sudden they went back and changed their mind and denied every treatment I have had (at 31,000.00 a pop) just had my 11th treatment this week, they have told me not to worry, I won't have to pay a thing. They have other ways of getting it covered for me. I called the insurance myself when I first found out about the denials. The representative I spoke to said it was because it was expiramental - sad that I had to inform him that the FDA had actually approved it for use in CRC treatment in May... Then they started saying it wasn't medically necessary - um, hello this stuff is the only thing that has succeeded in beating back my cancer therefore it is the main reason I am alive... Not medically necessary my ass. .

I'm outraged reading this. Get Merk --Keytruda manufacturers-- lawyers deal with your insurance. Your doctor can contact them too: https://www.merckaccessprogram-keytruda ... e-program/
If that fails, you can ask Laurie Todd to help you: https://www.statnews.com/2016/04/25/insurance-warrior/
She's a fellow of us in Colontown; post your problem and tag her in Downtown, she's a member there too: https://www.facebook.com/laurie.j.todd


My docs office has been working with Merck and they are aware of the crap my insurance company is pulling. It has been almost 2 months I think of back and forth with the insurance. They were able to get merck to cover my treatments going forward and I just received a letter from them today stating that they are giving me copay assistance as well. We will have to see how this all comes out in the wash. BCBS of TX did cover 2 treatments recently - I only found that out because I went to get a script and there was no copay. Found the entry where they covered it but hit me with deductible and coinsurance, it wouldn't let me pull up the eob. I will have to go back and see if it will allow me to view it now. Since I am now at my out of pocket max they will have to pay for it all anyway, seems kind of pointless to fight about it so much. My onc was so upset he thought I should hire a lawyer and sue the insurance company.
41 yrs old
Tumor found 9/2015
Surgery 1 - 11/2015 LAR and colostomy
Surgery 2 - 11/2015 wound vac
Surgery 3 - 12/2015 revise resection, move colostomy
Mets to liver - tumor inoperable - one add'l met destroyed
Stage IVa (T3 N2a M1a)
Primary tumor 9 cm x 7.5 cm x 2 cm
Beginning Folfox 1/2016 - Failed
Beginning Folfiri and vectibix 8/2016 — Failed
Beginning Folfirinox + Avastin 11/2016 - Failed
Beginning Keytruda 1/2017
CEA drop from 345 to 7.3 after starting immunotherapy
Lynch positive 3/2016

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Maia
Posts: 2443
Joined: Fri Aug 24, 2012 8:00 am

Re: BeansMama - I'm still kicking (butt that is)

Postby Maia » Tue Aug 22, 2017 2:38 pm

A., glad to hear it is somehow fixed now, and happy to know that your onc is so willing to fight for you, also in this aspect : )
And big congrats on moving on with your life. It's hard but you'll be better and will be stronger because of all this. xoxo

mariane
Posts: 676
Joined: Sun Sep 13, 2015 6:16 pm

Re: BeansMama - I'm still kicking (butt that is)

Postby mariane » Tue Aug 22, 2017 8:51 pm

BeansMama, I am glad that Keytruda is working and you solved some of the personal problems.
I had problems with tumors which after initial super shrinkage stayed more less the same for about 7 months. Then they suddenly shrunk. Body needs time to process all the dead tumor residue. The process may take sometime. I think you are almost there. The curative sugery is around the corner.
I keep you and your Bean in my prayers,
mom of now 10 years old twins, dx @ 40 in 6/2015 with upper rectal cancer, 10+ liver mets, CEA 140
chemo: 8/2015 - 10/2016 - 4xFOLFIRINOX, 2xFOLFOX, 8xFOLFIRI, 10x5FU, HAI pump -12xFUDR
4 surgeries, complete pathological response
CEA<2 since 10/2015
NED since May 2016

I praise God for every day with my family!

CatzinDJ
Posts: 45
Joined: Thu Dec 22, 2016 12:06 pm

Re: BeansMama - I'm still kicking (butt that is)

Postby CatzinDJ » Sat Aug 26, 2017 8:52 am

I'm so glad you posted. I am upset for you about insurance. I'm glad others have given you better information.

Take care of your Bean. It's no wonder that she is stressed out. I'm glad she is going to a counselor. Our children bear so much stress.

Have a great vacation.
53 & Female
DX: Rectal Cancer (RC) diagnosed in Thailand
Tumor Location: Rectum
Tumor type: invasive adenocarcinoma
Tumor size: 4 mm
Tumor grade: low grade
Baseline CEA value (4.46) 5/2016
CEA 6/2/2016 4.8
Lynch- Negative.
LAR 7/13/2016 in Seatle, Wa
Home 7/18/2016.
CEA 12/9/2016 2.8
CEA 6/8/2017 5.6
Colonoscopy and Cat scan June 2017 NED
CEA 3/2018 2.9
TB latent recently diagnosed.

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BeansMama
Posts: 959
Joined: Thu Jan 28, 2016 1:38 am
Location: North Carolina

Re: BeansMama - I'm still kicking (butt that is)

Postby BeansMama » Fri Sep 08, 2017 10:20 am

Thanks everyone.

I have gotten quite a reprieve from looking at him. He was out of town most of last week (guess where?) lol. Was home for 2 days - just long enough to drive me to treatment and back to keep up his appearances. What he doesn't realize is that they all know already. I am seeing a therapist within the Levine system so what he did is right there in my chart. My Palliative care doc was waiting for an appointment I went to by myself to ask about it. The funny thing is he thought I was making underhanded snide comments about it at my appointments while he was there. Why would I do that? I seriously asked him that. I was EMBARRASSED that he had done that to me. I'm certainly not going to make comments about it to my doctor!!!

I think he is supposed to be back Sunday, he is in AZ for his brother's birthday now. Must be nice to be able to just take off like that all the time. I am going away with a friend of mine and leaving the bean with him. We are going to a quieter beach that is more adult oriented for three days. She and I leave Wednesday and return Friday evening. Looking forward to some rest and relaxation. I will miss my Bean though. He needs to spend time with her too. If he is planning on moving out of state then he won't see her as often. If it were me I would be taking all the time I could get with her. Don't know why he seems to be doing the opposite. Probably the same as why he did what he did to me, push me away so it hurts less if I die.

I have learned a lot about him in these last few weeks. He is always chasing that honeymoon period at the beginning of a relationship. Once real life sets in and the relationship begins to need work to maintain is when he starts having problems. I hope he can make the changes necessary to make a relationship work with someone. Personally I just need to take the time to heal. I stuck my toe in the dating waters and decided I'm just not ready. Maybe once Larry is gone and I feel better than I do now I will change my mind but not really sure.

Paid off a bunch of debt with part of the settlement. He trashed my credit by just not paying on the credit cards in my name etc. But of course he doesn't have an issue with that at all.

So I sit waiting for it all to roll over, making sure I stick to my budget so I can save every penny to have a bigger down payment or to just start a nest egg for house repairs etc.

Keeping myself busy helps a lot. Been a rough few days coming off treatment and having to do everything myself but Beans has been a great helper. For that I will bring her a gift from my trip.

Anyway, that is how I am doing today. I hope you all are doing well.

Still keeping all of you in my thoughts and prayers,
Beans.
41 yrs old
Tumor found 9/2015
Surgery 1 - 11/2015 LAR and colostomy
Surgery 2 - 11/2015 wound vac
Surgery 3 - 12/2015 revise resection, move colostomy
Mets to liver - tumor inoperable - one add'l met destroyed
Stage IVa (T3 N2a M1a)
Primary tumor 9 cm x 7.5 cm x 2 cm
Beginning Folfox 1/2016 - Failed
Beginning Folfiri and vectibix 8/2016 — Failed
Beginning Folfirinox + Avastin 11/2016 - Failed
Beginning Keytruda 1/2017
CEA drop from 345 to 7.3 after starting immunotherapy
Lynch positive 3/2016

DarknessEmbraced
Posts: 3428
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: BeansMama - I'm still kicking (butt that is)

Postby DarknessEmbraced » Fri Sep 08, 2017 7:52 pm

I'm sorry you're having such an awful time but am glad you're going on a trip with your friend; you deserve it!*hugs*
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)


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