Now...plan C?

[chixter]

Katies recent meeting with her oncologist did not go as we hoped. The tumor genetic studies from MSK and Foundation One reveal 6 genomic mutations of this neuroendocrine carcinoma that is on the outside of her ascending colon. All are resistant to most chemotherapies. Three are very rare and few if any studies are available on treatment options. Dr. V at MSK concurs with our ONC that trying Stivarga may slow progression or even stabilize it. Folfiri appears to be ineffective as was the FOLFOX. Her liver while functioning now is about 60% tumors. I spoke over the phone with her ONC today and asked his candid opinion of risk/reward of the Stivarga vs refusing any further chemo treatments. He believes liver failure is likely within a month without it or if it is ineffective. We can't predict efficacy until its tried. 5 months ago to the day, I went as her wingman to purchase her first new car bought solely by her. I proudly watched as she negotiated a good deal and signed the papers for her car. Yesterday I am watching her sign an advanced medical directive declining life supporting efforts. I don’t know how I will be able to get through this.

I've read through the Stivarga thread on this board. Sounds like nasty sh*t. I'm worried about it's liver toxicity. Also diarrhea seems to be very common as well as brutally sore feet. Numerous runs to the bathroom on painfully sore feet sounds awful.

I'm hoping for a little family sit down this evening Wifey & I, Kate and her boyfriend. The choice to continue this route is hers. Her QOL is in the tank now as it is....I'd hate to see it worsen for little or no benefit. I don't want anyone to think I'm giving up hope. I'm still looking...most CT's she is disqualified for one reason or another, I have consulted with teams at Sloan, Mt. Sinai, Fox Chase as well as her very good local guy. The song remains the same.

[Cj51]

Chixter, I'm so sorry the news wasn't better for Katie. I have nothing to offer but prayers, my heart breaks for you.

It sounds like you have raised a strong, intelligent, independent young woman. I can hear the pride in your posts, and it's well deserved. In the face of dire circumstances, she's keeping her head and making hard decisions. it must have been torture for you to watch her sign that document. I'm sure she will think it through and do what she feels is right for her. She's lucky to have you by her side. If she decides to go forward with treatment, you have my prayers that it works swiftly to stablize her.

My prayers are with you and your family.

Cj

[ANDRETEXAS]

Chixter:

I am so sorry to hear this news. Prayers from Austin in hoping something can be found to help Katie. I know if there is a way, you and her doctors will find it. Never give up !! Andre

[Laurettas]

Chixter, I am so sorry to hear this news. Wow. I have a question about using Stirvaga. It is used for colon cancer and GIST. What your daughter has is obviously not either one of those so why would it be recommended? Shouldn't she be treated with something designed for neuroendocrine tumors?

[gfpiv]

I really wish you guys would get a good break for a change. You've done absolutely everything you can, it's just that her decent options seem almost nonexistent. I don't blame you for being a bit wary about Stivarga, I've heard similar things...i.e. that it almost never results in radical remission, and the side effects can be onerous. Then again, Katie may want to give it a go to say she tried everything they offered her...and quit after 1 tx if it didn't go well.

I'm not sure if she would qualify at this point, but any discussion about sir-spheres?

Best wishes,
Chip

[Delinda]

Chixter, I have no words to comfort you after this staggering news. Praying they find something to push back & works against this so she is at least more comfortable. I love the photo of Katie in your signature. She is so beautiful, strong, smart, and surrounded by loving support - I have to believe there is help for her somewhere. I will be praying more than ever for her and the family. Hugs, love, and light to you. XXOXO, Delinda

[Val*pal]

Chixter, I am so sorry about the recent findings. It is unbearably sad to think that such a lovely young woman has to go through this. As a parent, I know it must be wrenching for you and your wife as well. Though it's important to never give up hope, I know that acceptance can bring a peace of sorts. You are wise to question the effects that Stivarga may have since QOL is very important, though it's also very tempting to see if it works. I'm sure you will all make the best decision.

[janderson]

I am so sorry about this latest news. What an unimaginable spot your are in. I am sorry for your daughter and your whole family.

[pukalania]

Chixter so sorry to hear the news..i'm sure you guys as a family will take the right decision..what a sweet young lady you have! sending hugs

[Jack&KatiesMommy]

Chixster:
Katie is a beautiful girl and I cannot imagine what you are going through. I often thank God for giving this to me and not ot one of my children. My heart and soul are with you. I will be prayingto God that He guides her to make the right decision and that He is with her and you.

xxx
Cynthia

[juliej]

Chixter, this just sucks and there is no glossing it over. Anyone who gets cancer at a young age was dealt a shitty hand of cards, but one that is chemo-resistant? There are no words for the anger/sadness I feel about this happening to your beautiful daughter. I wish you clarity in figuring out what is best for her and your family. And as much peace as is possible with those decisions.

Hugs to you,
Julie

[Voxx66]

Are there any trials you can look into? If not then you probably have to try Stivarga if she wants to keep fighting. I'm incredibly saddened by this whole situation and I find I am running out of words.

[JoyceV]

My heart is breaking for your beautiful young daughter, you, your wife and entire family. I cannot imagine going through this with my child. I don't know what else to say but my thoughts and prayers are with you.

Joyce

[lauragb]

I have no words for the unfairness of this situation. I am just so sad for all of you. I hope you can find some way to give Katie some peace and improve her quality of life.

My thoughts are with you.
Laura

[tnt23]

I was so sad to read your post. Your family is covered in love and prayers. I continue to pray for that miracle for your beautiful Katie.