Getting knocked down over and over. Questions, help! UPDATED

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mlibertone
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Getting knocked down over and over. Questions, help! UPDATED

Postby mlibertone » Wed Dec 19, 2012 9:21 pm

My dad has been being treated by the VA hospital. We recently did a benifit to raise money to pay for health insurance for him bc before this point, he had none. We did it!! Yay! This week dad got accepted by an insurance company so we are now able to find him another place to go other than the VA. We were very pleased. We still are. Today he went online to look up his CEA from his last blood draw 2 weeks ago. It has gone up about 25 points. Ok....I'm freaking out, he's freaking out. I'm scared his cancer is growing again or his meds aren't working. We also found out today after a year and a half of fighting this that his cancer is the mutant type. We are just learning this! I know nothing about mutant. I do know that after the Folfiri plus avastin, our only other hope is the big R, which I also know nothing about. Am I right?? Is there anything else? Can they try other combos? I know I might be premature in my thoughts and what not but, we all know how it goes. We all know how fast things go sometimes. I am just trying to keep on top of things. I am the only person in my family wo researches or tries to find out any and all information I can to help my dad. So, any help or advice would be greatly appreciated here. We did call his current Onc after we looked at the CEA. She said that the jump isn't that big, that she has seen bigger. It doesn't help me to feel better bc I know the last time my dad's CEA rose, his cancer was growing and his meds were no longer working. Anyway, we requested that she recheck his CEA and if it is still on the rise, we have requested at CT scan to find out what is going on. It just seems like we can't catch a break. I just want something to work. I'm scared and I'm sorry for babbling or going on and on. Thank you for any help in advanced. Love to all!

UPDATE IN LAST POST

Michelle
Last edited by mlibertone on Wed Dec 26, 2012 9:12 pm, edited 1 time in total.
Michelle, Daughter of Mark
Dad DX: 7/25/11 Kras mutant
Stage IV RC mets to liver
10 rounds of Xelox 8/11-5/12
Xeliri 6/12/12 added Avastin
3/13 radiation, hip met
4/12/13-hospice
My beautiful angel 9/16/13 @ 3:23pm
I love you daddy! I'll see you again!

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Kathryn in MN
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Re: Getting knocked down over and over. Questions, help!

Postby Kathryn in MN » Wed Dec 19, 2012 9:30 pm

There is some research that shows if a patient is KRAS mutant and it is codon 13, Erbitux may still be of benefit. If it is codon 12, probably not. So Erbitux may still be a possibility. Regorafenib and Zaltrap are two other drugs that he hasn't tried yet that could be tried if it is determined that the current combo is not working.

Any one number of CEA means nothing. What matters is a trend over time, and past history too. If his CEA was 4, and now it is 29, and you recheck in 2 weeks and it is 49, then I would be concerned. But if his CEA was 500, and now it is 525, and in two weeks it is 545 that wouldn't mean as much... The approach to wait and recheck CEA, and then scan if it rises significantly again is the best one. All you can do is wait and follow that protocol, and hope for the best.
CRC AUG09 Age 47
Sig Res T4a N2a Mx, KRAS mut codon13
Mets bones & nodes
FOLFOX, FOLFIRI, Avastin, Radiation
Irinotecan, Zaltrap & STAR RFA
APR13 pleurisy & ascites - more chemo & draining
http://www.caringbridge.org/visit/kathrynblume

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mlibertone
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Facebook Username: Michelle Libertone-Cook

Re: Getting knocked down over and over. Questions, help!

Postby mlibertone » Thu Dec 20, 2012 12:22 am

Thank you for this information Kathryn. I'm going to have to find out about the Kras Mutant. I'm not sure which his is. I was the one who came up with the plan to retest CEA and then if there is more of a rise to do a CT. I just don't want my dad to continue doing things that aren't really helpful and are making him feel even worse. I also want to make sure that we are trying everything we can, if he wants to and he says he does. We had a bit of a talk today. A hard talk but, things that have to be said and discussed. This is so hard. I love my dad so much. I hate seeing him go through this. I hate seeing him slip away and there's nothing I can do. Then to see him struggle and cry bc he feels guilty and upset about ruining a Christmas or us wasting money buying him things bc he may not be here to enjoy them. It's hard seeing him struggle with the thought that eventually he will have to leave us behind and he doesn't want to. He's worried about all he will miss. I don't know where else to put this. I love my dad. He's my best friend.
Michelle, Daughter of Mark
Dad DX: 7/25/11 Kras mutant
Stage IV RC mets to liver
10 rounds of Xelox 8/11-5/12
Xeliri 6/12/12 added Avastin
3/13 radiation, hip met
4/12/13-hospice
My beautiful angel 9/16/13 @ 3:23pm
I love you daddy! I'll see you again!

Deirdre
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Joined: Mon Sep 06, 2010 7:10 am
Location: Ireland

Re: Getting knocked down over and over. Questions, help!

Postby Deirdre » Thu Dec 20, 2012 9:06 am

Have no advice just wanted to say hope you do catch that break
Daughter of loving dad, dx Stage IIIC Mar 10
Resect Apr 10. 1 lymph nodes positive
Heart history has ruled out treatments
NED to date!

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mlibertone
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Re: Getting knocked down over and over. Questions, help!

Postby mlibertone » Thu Dec 20, 2012 11:27 am

Thank you Deirdre! I just talked to him. He said he couldn't sleep last night. :( He's worried. He went and got his blood drawn this morning for the new CEA reading. He's feeling down and disappointed. The last scan from just about 2 months ago showed that he was stable and that the meds were working enough to stop growth but not shrink what was already there. His CEA was dropping and we were happy. Now this and right before Christmas. I want answers and unfortunately, we probably won't have any for a few weeks. I hate this and I hate how it takes over our whole life. :(
Michelle, Daughter of Mark
Dad DX: 7/25/11 Kras mutant
Stage IV RC mets to liver
10 rounds of Xelox 8/11-5/12
Xeliri 6/12/12 added Avastin
3/13 radiation, hip met
4/12/13-hospice
My beautiful angel 9/16/13 @ 3:23pm
I love you daddy! I'll see you again!

annalexandria
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Joined: Wed Sep 28, 2011 11:46 am
Location: Seattle, WA

Re: Getting knocked down over and over. Questions, help!

Postby annalexandria » Thu Dec 20, 2012 3:27 pm

Not much in the way of advice here, as my doc doesn't use CEA for me, but I certainly have seen other folks on these boards who have had changes in CEA that turned out to not be related to cancer. In fact, in some cases, a sudden "flare" in CEA is associated with the death of cancer cells, and better prognosis, so I'm going to keep hoping that this will turn out to be true for your dad. I'm really sorry he's having to go through this, but I'm glad he's got you to support him and listen to his fears. Speaking as a mom myself, I think you are a really wonderful daughter. I'm sure your dad feels very lucky to have you. Hugs to both of you~Ann Alexandria
Mom, librarian
Dx age 43, Sept. '09, Stage IV Carcinosarcoma of the colon
5 surgeries, 2009-2011:
colon/sm. bowel res., node removal, peritoneum, hysterectomy
FOLFOX/Avastin Feb.'10-Aug '10
Carbo-Taxol Dec. '10-Feb. 2011
NED since Dec. 2011.

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mlibertone
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Facebook Username: Michelle Libertone-Cook

Re: Getting knocked down over and over. Questions, help!

Postby mlibertone » Fri Dec 21, 2012 4:33 pm

Alexandria, Thank you so much for the encouragement. I can only hope that the rise is due to cancer cells being killed off. I'm more than happy to be here with my dad helping him through. Him and my mom live with my husband and I and our two children in a duplex house that hubs and I own. We each basically live on one of the sides of the house but, we're always together. There's a doorway leading from our side to theirs. I love it this way and now I'm happy to have it this way. I will have no regrets in the end and I'm thankful to have lots of time with my dad daily. I'm very blessed. :)
Michelle, Daughter of Mark
Dad DX: 7/25/11 Kras mutant
Stage IV RC mets to liver
10 rounds of Xelox 8/11-5/12
Xeliri 6/12/12 added Avastin
3/13 radiation, hip met
4/12/13-hospice
My beautiful angel 9/16/13 @ 3:23pm
I love you daddy! I'll see you again!

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mlibertone
Posts: 261
Joined: Wed Nov 02, 2011 12:56 pm
Facebook Username: Michelle Libertone-Cook

Re: Getting knocked down over and over. Questions, help!

Postby mlibertone » Wed Dec 26, 2012 9:10 pm

Just wanted to post a quick UPDATE. Dad's Onc called Christmas Eve and let us know that the new blood draw showed dads CEA went down 10 points. I'm very happy with this. Was ecstatic to hear Christmas Eve. What a blessing and a relief. So, we didn't have to spend our whole holiday worrying and wondering if the meds weren't working or if we were going to have to figure out something new. Just wanted to share.
Michelle, Daughter of Mark
Dad DX: 7/25/11 Kras mutant
Stage IV RC mets to liver
10 rounds of Xelox 8/11-5/12
Xeliri 6/12/12 added Avastin
3/13 radiation, hip met
4/12/13-hospice
My beautiful angel 9/16/13 @ 3:23pm
I love you daddy! I'll see you again!

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Rob in PA
Posts: 1978
Joined: Wed Dec 09, 2009 9:16 pm
Location: Pennsylvania

Re: Getting knocked down over and over. Questions, help! UPD

Postby Rob in PA » Wed Dec 26, 2012 10:28 pm

Awesome. Nice present!
dx 11/07 crc IIIb @ 39
Xelox/Rad/ temp colostomy
LAR/J-pouch/ temp ileo
Folfox-8
Failed reversal
2/09 liver mets; liver resect/ileo reversal
Folfiri/Avastin - 12
2/11 5 lung mets
Folfiri/Avastin 2011
SBRT 3/12
Lung met 5/13/ said NO to more chemo
SBRT 8/13
2 lung mets 5/14, VATS 8/14, NED

michelle c
Posts: 1876
Joined: Wed Dec 02, 2009 3:58 am

Re: Getting knocked down over and over. Questions, help! UPD

Postby michelle c » Wed Dec 26, 2012 10:45 pm

Wonderful news! I think that was very nice and thoughtful of your dad's onc to phone on Christmas Eve! Awesome!
25 May 09 Dx with CC (sigmoid colon) 2 days after my 44th b'day
CEA prior to surgery 4.7
3 Jun 09 LAR - Stage III 3/10 lymph nodes
6 Jul - 10 Dec 09 12 cycles FOLFIRI
Genetic testing - inconclusive for Lynch
Jul 12 port removed & hernia repair

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mlibertone
Posts: 261
Joined: Wed Nov 02, 2011 12:56 pm
Facebook Username: Michelle Libertone-Cook

Re: Getting knocked down over and over. Questions, help! UPD

Postby mlibertone » Thu Dec 27, 2012 11:19 am

Thanks! It was honestly the best gift ever, even as small as it was, best ever. It saved us all being worried over the holiday until dads next treatment. We really love the Onc and as we move on bc of the new health insurance, my dad still wants to see if the new Onc we go to will consult with the this one. Not sure how this will all work. It's hard bc we do love the people at the VA. They are awesome. We just want other opinions and such. I'm sure you all understand.
Michelle, Daughter of Mark
Dad DX: 7/25/11 Kras mutant
Stage IV RC mets to liver
10 rounds of Xelox 8/11-5/12
Xeliri 6/12/12 added Avastin
3/13 radiation, hip met
4/12/13-hospice
My beautiful angel 9/16/13 @ 3:23pm
I love you daddy! I'll see you again!

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magda12
Posts: 69
Joined: Wed Nov 21, 2012 8:18 pm

Re: Getting knocked down over and over. Questions, help! UPD

Postby magda12 » Fri Dec 28, 2012 1:47 pm

Hi Michelle,

Teared up when you talked about your dad... I can completely relate. I love my dad so much, and can't imagine not having him around, telling me silly jokes, making me special Buffalo wings. I am also the only one looking up stuff and treatment options, etc. Take comfort in the fact that we are blessed to spend time with them and that we're doing all we can.. as you said, at the end of the day, we'll have no regrets. :) Also, your avatar pic is one of my goals... I want so badly for my dad to still be around when I get married and to meet his grandchildren!

Anyways, very happy for you and hope everything keeps looking up!!

Hugs and Best Wishes,
Magda
Loving only child of my awesome papi
Dx CC 10/12 adeno., stage TIIIB
Poorly differentiated, SRC
11/12 Colon resection surgery
12/12 Started FOLFOX (6 months)
6/13 Finished 12 txs of FOLFOX!
6/13: CT Scan - spot by surgery incision
7/3/13: PET - Nada! :D


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