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

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BeansMama
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Location: North Carolina

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

Postby BeansMama » Fri Aug 18, 2017 9:37 pm

Hey everyone,

Sorry again for the prolonged absence. I'm still kicking.

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.

Still dealing with the divorce stuff, getting closer to actually separating. Should be by the end of next month. Good news is I got my settlement from him so I can go buy Bean and I a nice house. We are staying right here. He is looking at jobs where his hussy lives. He will still be close enough to see Bean pretty regularly, we would split the drive - with him doing the majority, driving for long periods is still painful for me.

Bean and I are taking a long weekend in Myrtle Beach next week, a little vacation for the two of us before she starts school again.

STILL waiting on surgery, the good news is Larry is now down to 7 cm from 11 (at least that was the measurement when I saw the surgeon in June) she wanted 2 more months of treatment, well 4 more treatments really. Last one for that will be Sept 6th, have a CT scan scheduled for the 5th. This time I am going to be very frank with her. I cannot do this yo-yo anymore. Get our hopes up, then get told not yet, more treatment. It's really starting to affect Bean. Her anxiety is so bad she has started to pick at the skin on her arms and legs. There are so many scars and scabs it breaks my heart. I have been working with her doctors on anxiety medication and she is seeing a therapist. It seems like we may be finally getting somewhere, her skin is healing up and I am not having to tell her to stop all the time. She finally opened up and said she was not scared of the surgery itself, she's afraid they are going to operate on me so many times that my body won't be able to handle it and I will die, or "poof" as she put it. Getting it out finally I think has really helped her. The poor kid has been through so much in the last 2 1/2 years (I can't believe I have been fighting it for that long. No wonder I am so dang tired!)

So that's it in a nutshell. Been really busy trying to focus on Bean and get her to a good place. Lots of reassurance and time together.

Again, sorry for the disappearance, I will try to pop on more often. Things are just really crazy right now.

Love you all, still keep every one of you in my thoughts and prayers.

CRguy, thanks for the email - I did get it, just took me a bit to get some time to hop on, I also got a hey what's going on - CC is wondering about you on FB today so I figured I should sneak out to the front porch for a few and update. Now it's time to get back to the Bean, hugs to all of you. You guys are amazing.
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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CRguy
Posts: 10110
Joined: Sun Feb 10, 2008 6:00 pm

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

Postby CRguy » Fri Aug 18, 2017 11:18 pm

BeansMama wrote: You guys are amazing.

YES ... yes we are
.... BUTT do you know where we learned to BE amazing ?????

from homies like YOU sista'
WORD

Harmony to you and da' Bean
Plan your work ... then
work your PLAN

anything, anywhere, anytime
gotchur' back

"call me .... you've got a friend "

BUTT yes ... Yes, you DO need to answer your emails ... :shock: :mrgreen:

CR on the Journey with y'all
Caregiver x 4
Stage IV A rectal cancer/lung met
13 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

WarriorSpouse
Posts: 214
Joined: Tue Aug 16, 2016 9:02 pm

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

Postby WarriorSpouse » Sat Aug 19, 2017 12:43 am

Good to see you on here Bean's Mama and glad that you are as focused as ever.
Sounds like you are embracing the challenges of treatment and your pending surgery. Keep up the good work and please keep checking as you move forward.
Good thoughts and well wishes!
WS
D/H 47 years old, 10/2014, Stage IV M/CRC, nodes 12/15, para-aortic, 5 cm sigmoid resection, positive Virchow. KRAS mut, MSS, Highly Differentiated, Lynch Neg, 5FU/LV and Avastin 1 YR (Oxi for 5 months), Zeloda/Bev since 01/2016. 02/2019 recurrence para-nodes, back to 5FU/LV Oxy/Bev. It is working again. "...Perseverance is not a long race; it is many short races one after the other."-Walter Elliot

Lovenothate
Posts: 37
Joined: Tue Aug 16, 2016 3:13 am
Facebook Username: Emily.guzman

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

Postby Lovenothate » Sat Aug 19, 2017 3:41 am

So happy to see an update Beansmama!!

I'll be sending some good healing vibes to you and Bean! I know spending time with my mum gives me new strength. Keep kicking Larrys butt so you can be through with him!

:D :D

Em
daughter to DM dx Stage IV CRC @47 July 2016
total hysterectomy b/c ovarian mets abscites 6/16
Colostomy
Folfox 7/16
Lung spots 2mm each 9/16
Xeloda & Avastin 1/17
Shrinkage to lungs spots! 4/17
Break from Avastin/ Xeloda continued 7/17
Omentum mets/ lungs mets stable(possibly not malignant)
Folfiri 8/17
1 lung spot all along-clear abdomen scans chemo break until 4/4/17

KElizabeth
Posts: 400
Joined: Sat Oct 31, 2015 12:41 pm
Facebook Username: KElizabeth
Location: Omaha

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

Postby KElizabeth » Sat Aug 19, 2017 9:52 am

Glad you're ok and glad your pal Larry is loosing some weight.
Female age 39- ,2 teens.
Colon Cancer - DX March 2013
Age 34 at DX - Stage III B
Resection surgery -May 2013
FOLFOX - June, 2013 to Sept, 2013
5FU plus leukavorin Sept, 2013 to Dec, 2013
METs liver and lungs discovered Sept, 2015
KRAS - MSS
FOLFIRI plus Avastin - Sept, 2015 - July 2017
Durvalumab and Cediranib Sept 2017 Dec 17
FOLFOX with desensitization protocol - current

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 » Sat Aug 19, 2017 5:15 pm

Thanks for the update Beans! I'm sorry you're having such a hassle with your insurance company and hope it gets remedied soon!*hugs* I'm glad you will be getting a settlement from your ex husband! A vacation with Bean will do the both of you good! Glad Larry is shrinking!*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! :)

CLD
Posts: 206
Joined: Fri Mar 27, 2015 7:16 pm

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

Postby CLD » Sat Aug 19, 2017 7:52 pm

My brother in law was denied Keytruda by Highmark for his Stage IV lung cancer. With Maia's helpful reply to my plea for advice, his wife was able to work with Merk and they are giving him the Keytruda for free (Compassionate Care). I don't know how to link back to the initial thread, but your oncology office probably has experience with this anyhow. Good luck.
Wife to DH/ Father of 6 (age 42 at dx) diagnosed Jan 2015 stage IIIC
Tumor deposit in mesentery 13/24 lymph nodes +
CEA at dx: 5
MSS
Low Grade/Mod. Diff.
FOLFOX 6 months
N.E.D until June 2018
PET Scan 6/18
Biopsy confirms cancer in 3 Paraaortic lymph nodes
Folfiri + Avastin (6tx) and Xeloda during radiation
Cancer all over both lungs dx Jan 2019
FOLFIRI +AVASTIN presently

DebZ
Posts: 83
Joined: Fri Nov 14, 2014 9:01 pm
Facebook Username: Bulc

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

Postby DebZ » Sat Aug 19, 2017 8:59 pm

Thanks for checking in! We worry when we don't hear from you in a while! Go have a great vacation and forget all the other stuff. I just got back today from a week away. Leaving it all behind is absolutely necessary for you and Bean.
48 @ diagnosis Sept 2014
MSS; Kras mutant G12D
Oct 2014: right hemicolectomy
Dec 2014-May 2015: Folfox
June 2015: clean scans
Sept 2015: scans reveal ovarian mass and liver met; Folfiri
Jan 2016: liver wedge resection and hysterectomy
April 2016: multiple lung mets; Folfiri+Avastin
June 2017: lung mets growing; switch to Folfox+Avastin
Jan-April 2018: dropped oxali; CEA rising
May 2018: back on Folfox+Avastin, add pulse steroid treatment to get platelet count up (continuously in 50s)

TXLiz
Posts: 249
Joined: Thu Sep 22, 2016 3:31 pm

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

Postby TXLiz » Sun Aug 20, 2017 5:27 pm

BeansMama: You are showing strength, class, and grace by fighting this wretched disease and putting your Bean first.

Bean truly won the Mama lottery with you.

Best wishes to you and Bean. I am truly sorry that your child has anxiety about your health, it's expected but unfair and sad. I think you are doing great. Strength strength strength from me to you.

Have fun at Myrtle Beach! I love that place! Good times!
Vomiting and blockage 9/19/16 46 y F
R hemi colectomy 9/20/16
Stage 3 B CRC, located in cecum
3 out of 16 lymph nodes positive
perineural invasion/lymphovascular invasion
infiltrating, mod differentiated adenocarcinoma with a mucinous component
separate tumor nodules present in pericolonic adipose tissue
MSI-high
Baseline PET scan clear 9/16 CEA 0.5
FOLFOX 10/16- 3/17
April 16th, CT scan clear. CEA 1.1
Lynch "inconclusive"
Colonoscopy 10/5/2017 clear

mtipte
Posts: 80
Joined: Mon Dec 19, 2016 4:35 pm
Facebook Username: mario tipte
Location: Lima, Peru

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

Postby mtipte » Sun Aug 20, 2017 10:48 pm

Hey Beansssssss I've been praying for you!!! :)
Dear Mum 60 y/o
dx 09/16 RC III CEA 9
Chemo/rad 28 from 10/16 till 12/16
Xeloda
multiple lymph nodes
Adenocarcinoma low grade invasive
Now 2000 mg Xeloda for 2 weeks as maint. before surg.
24/01/17 CEA 4,9
APR surgery permanent colostomy :( 24/03/17
3/26 nodes involved -LVI - clean margins
Staged after surgery: T3N1Mx
Infection due to bladder problems. Slow recovery.
CEA 1.7 :)
Adj. Chemo Xelox 6 rounds 29/04/17
After round 3 CT Scans Clear 15/07

God is faithful. Only Jesus.

JJH
Posts: 250
Joined: Mon Apr 24, 2017 7:26 am

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

Postby JJH » Sun Aug 20, 2017 11:52 pm

CLD wrote:... I don't know how to link back to the initial thread, ....

Here is how to link back to your original thread with Maia's helpful response:

http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=58382&p=459645#p459645

Here is some info on Merck's Patient Assistance Program:

https://www.merckaccessprogram-keytruda.com/hcc/the-merck-patient-assistance-program/

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LPL
Posts: 651
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

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

Postby LPL » Mon Aug 21, 2017 2:59 am

So good to see an update from you BeansMama.
Thinking about you.
Hugs /LPL
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a IVa 2/9 LN
MSS, KRAS-mut G13D
CEA & CA19-9: 5/18 2.5 78 8/17 1.4 48 2/14/17 1.8 29
4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change 3/27/17 NED->Jan-19 mets to lung NED again Oct-19 :)
:!: Steroid induced hyperglycemia dx after 3chemo
Surgeries 2016: 3/18 Emergency colostomy
5/23 Primary+gallbl+stoma reversal+port 9/1 Liver mets
RFA 2019: Feb & Oct lung mets

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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 » Mon Aug 21, 2017 3:47 pm

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

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Cowgirl918
Posts: 319
Joined: Sun Jan 17, 2016 12:55 am
Location: Indiana

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

Postby Cowgirl918 » Mon Aug 21, 2017 7:36 pm

Lots of love coming your way BeanMama! You are one of the bravest women I know. Hope the beach is awesome.
HX Colon Polyps Villious and Tubillovillous
12/29/15 Colonoscopy/Endoscopy - Ascending Colon Mass- Hemicolectomy Scheduled
1/17/2016 Right Hemicolectomy Cancelled
1/25/2016 CT No evidence of other disease
2/12/2016 EMR-ascending colon mass 80% removed
5/29/2016 Compressed lumbar spinal fracture (riding accident)
8/12/2016 EMR #2 ascending colon mass curative
8/13/16 NED
10/18/16 Autoimmune Diseases confirmed

Lee
Posts: 6028
Joined: Sun Apr 16, 2006 4:09 pm

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

Postby Lee » Tue Aug 22, 2017 11:44 am

So very glad to see your post. So sorry to read your personal life is not going well, butt then again maybe it is regard him.

I hope you get your surgery soon, Larry has overstayed himself, give your Bean a big hug from all of us. I know your personal life is very busy at this time, butt don't be stranger around here. Know that many people on this forum care for you.

You are never far from my though and prayers,

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!


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