UPDATE...PET CT today - ball of confusion!

[chrisy]

UPDATE..ah short lived hope there! Twasn't tumor flare...not too surprised but a bit annoyed they didn't hold tx today so I could move on to the next (Gemzar/carbo). Oh well that gives me two weeks to gear up or THAT. Scan shows some little things resolving but some big things growing. Too bad not the other way around.

Bye bye peach fuzz:(

Hi friends! First, indulge my usual plea for good thoughts and prayers today as I have a scan "sometime" which was scheduled yesterday.

Since I started Navelvine Nov 20, it's just been a continued ball of confusion about what is going on. I have pain at the tumor site (which is now most of my liver!), skyrocketing ca 19-9 marker and slightly declining CEA, ca 29.29. The 19.9 is a weird pancreatic mArker which has always been the only one that ever came close to working for me. When they palpate my liver, they can't really feel much change,,,, nor was there much change on an ultrasound they did last week when my total bilirubin went up to 1.6 (usually itis around 1.0). So they can't tell if it is progression or tumor flare.

She has kept me on Navelbine in the context of there are only a couple of chemo options left, and I've been burning through them pretty fast so they want to be sure. So I'm bummed, sad, feeling like I'm running out of hope as well as options.

But I got this running through my head on Sunday, to the tune of "ball of confusion". Dating myself once again!

Markers goin up
Markers going down
Why? Who knows! But it makes me wanna frown
Run run run but you still can't hide

Oops - progression there!
Or is it tumor flare?
Hope so, cuz now I have a little bit of hair
Fuzz. Buzz. Cuz it's so soft up there

End of line? Not so fine. Graduations, obligations, in my prime, need more time
Options? Chemo? Radiation? Make me leave the reservation?
People all over the world are shouting KILL THE BEAST!...
Or shut it down at least...

Oh, and cancer sucks...

Still breathing for now...

Chris

[StephN]

Gosh - you dated ME with that song. There was a time in my life pre-cancer that I had that song in my head.

Navelbine is known to be good against liver mets, so I think it is wise to wait for less "confusion."

Is there any way to get another biopsy to see if you have changed hormone status? I think you had one a while back, but one never knows with this sneaking snake of a disease.

There is a "letter number" drug in small trials that I think is a Dr. Slamon brain child. It was being referred to as 009 if I rightly recall. Heading to my PT now so no time to check on it.

FLARE, FLARE, FLARE.

[KsGal]

Applause! Applause! Love the tune..Im saying go with the actual physical evidence. They don't see much change, they don't feel much change. Those numbers can always change so much so fast. I have a whole head full of tumors and my "most accurate" marker is at 17.
It's a flare. Its gonna be all good news. This is a new year...it's gonna be our year, all of us. Im sending lots of prayers and positive energy. Big hugs.

[Joan M]

Chrisy,

I love your spirit. You're my kind of girl. I often tell people, i guess my number isn't up yet.

Perhaps a biopsy would tell more. I would agree that Navelbine is known to kick liver met butts.

Joan

[caya]

Chrisy I am sending lots of prayers, hugs and love from the great white north.

You are a Warrior Woman, and I am hoping the Navelbine will kick your liver mets to the curb!

all the best
caya

[Laurel]

I don't know, Chrissy-girl, I just have a good feeling and a lot of hope on this one.

[KDR]

Chrisy,
I'd rely on most on the CEA. And in a few weeks, maybe you can do T-DM1 with Perjeta. Have you given some thought to Kim (Mamacze's) contact for profiling?

Let's see what the scan says. Remember, a strong bond with spirit is essential to our healing. Please remain positive.

You're gonna be good.

Love
Karen

[NEDenise]

Praying, praying, praying!
Fingers and toes crossed!
Sending love and positive energy your way!
Denise

[yanyan]

Hi Christi I hope it's nothing serious! Could it be the medication you are taking that caused burlirubin to go up? Mine is 1.8 but onco didn't say anything about it. I know tykerb does cause it to go up. Sending u positive vibes!!

[Bunty]

Chrisy, I believe your spirit will keep you going for a long time yet. Keep strong, and I hope the confusion abates very soon, and you are on track physically and mentally again!
Best wishes
Marie

[cheery]

Chrisy

You've been a source of inspiration for me since I came on board and I've been following your posts quietly encouraged by your perseverance.

Navelbine was my first chemo for liver met at diagnosis and it gave me 4 years of NED. When the liver met came back recently, we did Navelbine again and it kept my liver met stable. But this 2nd round of Navelbine gave me lots of shooting pains in the hip and liver area. I didn't experience any pain whatsoever on my 1st round of Navelbine at diagnosis. I'd seen 2 oncologists to say that Navelbine is known to cause pain at tumour sites. So why the difference in pain experiences for both rounds? No one could explain..

Navelbine is very doable with constipation and low WBC. Other than that, my QOL was excellent.

Hope this helps and sending you positive thoughts and prayers.

[chrisy]

Well, so much for the navy beans! I loved that, it was a pretty east chemo but for me it didnt do much against the tumor:(

KDR, both TDM1 and Perjeta failed, although I think the Perjeta actually was working and it was the taxotere that failed. I'd love to think TDM1 might someday be an option for me, but not right now I'm afraid! Hope SOMETHING starts working and kicks this crap to the curb, or at least stops itis it's tracks. I'm overdue!

[Joanne S]

Chrisy, I remember "Ball of Confusion" all too well. and love your version! KILLTHE BEAST! My heart goes out to you. You are in my thoughts and I pray for reduction and great improvement for you. Super cyber hugs, Joanne

[Paula O]

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[Redwolf8812]

Praying, Chrisy

- Penny

[jaykay]

Thinking of you, Chrisy. Love your version of the song, you are a fighter (and very creative ;-))

Janis

[jaykay]

Oh yeah, forgot to mention - cancer sucks

[StephN]

Chris -
It may be a little late for detoxing concentrating on your liver. But, there may be some form of tea you can drink that will help you feel better.

Just thinking in terms of getting your body ready for the next round. (As much as possible ...)

How is the leg doing? Must be healed if you can go back to some hard chemos? Sorry that monkey wrench allowed your liver to let down its guard.

[chrisy]

Paula, Penny - THANK YOU!
Jaykay - never forget CANCER SUCKS:)
Steph - The leg is actually getting much stronger. I'm actually doing a little bit of my famous liver detox program right now, which coincidentally is excellent for the RBC, Hemoglobin and Platelets. I need some more work on the WBC tho. I'm also trying like heck to boost my protein and calorie intake - while staying anti-infammatory. So that leaves out the chocolate cake and potato chip diet approach. All to, as you say, get strong for the next round.

[Mandamoo]

Oh Chrisy - I am sorry navy beans didn't help. Ca you have perjeta with the gem and carbo? Everything I've read is dual blockade better - I suppose access may be an issue. I am so hoping this will work for you. I am having carbo alone with perjeta and herceptin. Hoping not to lose my hair.
I know you have posted your liver detox somewhere before - do you think you could post again? When had my WBC issues I found TCM and accupuncture helpful.
Wishing you reduction!

[chrisy]

Amanda - I have SO much data from running TM's 1-3 times a month, I'm hoping to make a case for perjeta with a different chemo. We went with taxotere because it was "easier" to get approved that way. Access will be a big problem, but I also believe a multiple blockade is part of the key.

Keep the faith, if you can knock it back with a chemo combo, you may yet be able to hold it with a targeted multi blockade. It's tough to get them to get "out of the box" without "proof".

[Mandamoo]

As I am receiving perjeta compassionately we seem to have some flexibility re chemo. My onc wanted to do Abraxane as there is more data about taxanes and none about platinum s with perjeta that she could find but she's happy to try that for me first - we decided carb alone with the H and P to try to limit toxicity. I too hope to. Get some stability and then maybe some targeted maintenance. I so hope you can get the perjeta as well - I'm no Oc but it just makes sense.

[sassy]

Chrissy,

Got you in my thoughts and prayers.

Add some mole' sauce and kick butt!

[karen z]

Chrisy,
It sounds like you have gotten good advice and are doing everything you can to get and stay STRONG !!! That IS the thing to focus on now and you are one very strong and tough gal !!!

[ElaineM]

I hope things get better for you soon. However, I don;t think you are at the end of the line and you won't be anytime soon. There are chemo combos you haven't tried yet and your doc might be willing to re'try old chemos in new or different combos.
Hang in there !!

[Mtngrl]

Chris,

I agree, cancer sucks. I love your spirit and spunk. I love the song but hate the reason you were inspired to write it.

Are you doing mindfulness meditation and/or guided imagery? It couldn't possibly hurt. Envision the chemo as a magic elixir engulfing the cancer cells and allowing fresh, healthy, orderly, perfect new cells to grow in their place.

I hope you can get a "blockade" of chemos with Perjeta. It certainly seems worth a try.

Hang in there! I'm praying for you.

[KsGal]

Im so sorry that the scan news wasn't better. I wish I had better words right now, but my brain is still kind of mushy. Just know I am sending prayers and positive energy your way, and keep getting stronger. There has to be good news right around the bend. ((hugs))

[Debbie L.]

Chris, clever lyrics. I could never keep up with the lyrics in that song -- so fast!

Sucky news, and how frustrating to get such conflicting signals and markers while trying to figure it all out.

Thinking of you, all good thoughts. Please keep us posted.

Debbie Laxague
PS: Thanks for posting an actual update, with its own subject and everything!