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CEA ACCURATE CANCER DID GROW

sheri22
Posts: 278
Joined: Jan 2009

Well DR visit wasnt good my cancer did grow from 7 centimeters to 11.5 centemeters. so I have to go to cleveland this Tues. my DR cant do anymore cause I have the mutant genes.
at least dr here is aggressive and they got me into cleveland a lot quicker then I was supposed to get in. I am dealing with it ok its a rollercoaster ride thats for sure as everyone here has been thru. What I really would like to here is any stage IV with mutant genes what options they gave you mine did met to lung but that spot is stable thanks for any imput

Sheri22

chicoturner's picture
chicoturner
Posts: 285
Joined: Apr 2009

Hi Sheri, sorry to hear that your tumor did grow. I was dx in 3/08, had surgery but still had mets to the lungs. They are not big, but several are there. I went on Oxy and did 12 treatments and the scans showed the spots gone. After a 3 mo. break the scans showed them all back in full force. I then went on irinoteacan and avastin for just over 1 year. They shrank a little, but are still there. After starting to have side affects that were risky my onc. stopped treatment. I to was tested and have mutant genes. With limited meds already used he sent me to UCSF as they can do trials. I just started trials this week. They do not expect to cure me, but the hope is keep me stable, keep tumors small until something else is available that might work. I feel really good and am thankful that my doc sent me to UCSF while I was still healthy. UCSF has been really encouraging and nice to work with once you get in. Getting in was tedious, but worth it. Yes, it all seems like a huge rollercoaster ride and it is the one you just want to be over sometimes. But, then, the next day it changes and I know I can beat this!! So can you! Hang in there. Let me know what is happening. Jean

sheri22
Posts: 278
Joined: Jan 2009

I kind of think that I might be put on trials, or maybe surgry I know I am really lucky to get into cleveland this soon good luck on trials let me know how they go

Sheri22

Paula G.'s picture
Paula G.
Posts: 596
Joined: Apr 2009

Sorry about the growth,Sherri. My husband has the Kras mutated gene also. He has cancer it in his liver and both lungs and his right adrenal gland.Last CT in March showed him to be stable. His CEA has gone up a little every three weeks. He will have his next CT on Thursday and see the Onc on Friday. I really don't have any input for you other than it sounds like your doc sending you elsewhere is a good thing. Sounds like you will be on a trial?
Keep us posted. Good luck, Paula

AnneCan
Posts: 3693
Joined: Oct 2009

Hi Sheri,

I am sorry to hear the tumour grew. I am glad your doctor is getting you where you need to be quickly. Good luck with the next step.

Sundanceh's picture
Sundanceh
Posts: 4297
Joined: Jun 2009

Wow, Sherri

It's growing at a good clip there - that's a big tumor. No experience with the gene mutation, but it sounds good to go to the "head of the list" at the Cleveland clinic.

I've heard folks speak of this place favorable, so I'm glad you will be getting some opinions there on what to do.

I hate this for you - know you are thrown for a loop right now with this news, so I can't diminish the shock value of this - will keep you in thoughts and sending hugs your way.

Please post back what you find out, as we will all be concerned to hear what they have to say. I'm sorry for what you are having to deal with and just stay as positive as can be for your appointments.

-Craig

lisa42's picture
lisa42
Posts: 3663
Joined: Jul 2008

Hi Sheri,

I'm sorry to hear you had bad news, but sounds like you will be able to get in where they can find more options. I'm also stage IV and have the mutated kras gene also. I'm done with the regular FDA approved treatments for colorectal, so I now must do either clinical trials or something more experimental/investigational. Right now I'm on something that's considered investigational for colorectal cancer. It's gemzar and xeloda (plus my onc also has me on Avastin again along with it). Gemzar (gemcitabine) is typically used for pancreatic cancer & i think kidney cancer. Dr. Lenz at USC/Norris Cancer Center recommended that I take Gemzar and Xeloda. I went there looking for a clinical trial after my regular onc didn't really know what else to do for me. There was a clinical trial I had hoped to get in but it was full with a waiting list. I didn't qualify for any others due to genetic testing. The Gemzar/Xeloda was a fight with the insurance- they denied it twice in a row because it isn't on the approved list for colorectal. After the 2nd denial, I went to the California Dept. of Managed Care and submitted a letter and supporting evidence from the phase II clinical trial on gemzar/xeloda at USC. I really didn't think it would help & my husband and I had just started paying cash for my treatments (we paid for 3 treatments), when I got a call from my health insurance (Health Net), saying they had received a copy of what I submitted to the State Dept of Managed Care and they were informing me they'd reversed their decision and will now cover the Gemzar and Xeloda for me, as well as they would reimburse me for the 3 treatments I paid for out of pocket. I was so amazed and pleased! I want everyone to know to not give up if insurance denies you- this decision by Health Net may set some precedent for other people, and maybe even for other insurance companies. My letter focused heavily on the fact that there were no other options left for me & by denying me, they were basically contributing to my death. It did apparently get their attention!
Let me know if you want any more specific information about any of that, if you should need it. Best wishes to you in finding a treatment or clinical trial!

Lisa

tootsie1's picture
tootsie1
Posts: 5006
Joined: Feb 2008

Hi, Sheri.

I'm sure you are feeling rather low at this point, but I do hope and pray the doctors in Cleveland will have some wonderful ideas for how to manage this for you.

*hugs*
Gail

Kathryn_in_MN's picture
Kathryn_in_MN
Posts: 1258
Joined: Sep 2009

I'm so sorry to hear your tumor has grown. I'm very glad they got you into Cleveland so fast. I hope they can do surgery and remove that tumor, and find chemo that works for you to kill anything remaining.

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