I Don't Quite Glow In The Dark Yet...

[chrisy]

So, they need to do ANOTHER test where radioactive material is injected into my body for the benefit of some high tech camera!

As I shared with you last week, I got a "bad" CT report, showing progression to my liver and possibly my spine. I went to my regular onc yesterdayand I finally actually saw the report (then drove up to UCSF to see my other onc!), and it was pretty crazy and a busy day.

On Tuesday I had a bone scan to clarify the issue with the spine and that showed (TA DA) NO metastasis to the bone. Just a little degenerative change in a completely different area of the spine. So now I'm a degenerate.

But it gets even better (or just crazier). Another comment on the report was "the left lobe of the liver appears to be absent". Excuse me?! It was there when I went in! So now, it is I rather than the "lesion" that is suspicious.

The plan if the bone scan was negative was to get further testing on the liver spot. My UCSF onc concurred with this, and now I have a PET/CT scheduled for next Tuesday. I hope Tuesday is my lucky day again and the PET/CT shows that my left lobe is present and the cancer is gone, instead of the other way around. I won't get results of that until the following week.

In the meantime, I'm sort of dancing between my wonderful local onc and my UCSF rockstar onc, all waiting to figure out what really is going on so we can move forward accordingly.

Right now, the plan is IF the scan is negative (although that is a very outside possibility), stay the course and continue on Herceptin. Which would be a good thing.

IF the scan shows recurrence in the liver, I will likely go into a PhaseII trial of Tykerb/Avastin, which Dr. Rugo at USCF believes would be a good opportunity for me. So also a good thing under the circumstances.

Anyway, I continue in limbo. It reminded me of Tom's mom and others who have had false positives and other crazy things. I can say one thing, I don't think I want to go back to the imaging center of the bodysnatchers any more!

In the meantime, since I've never had a PET/CT before, I think I'll go back and read all about how to do that right.

Much love to all,
Happy Easter

[Becky]

Happy Easter to you too Chrisy. I am getting a good feeling about the Night of the Missing Liver Snatchers. I'll stay tuned.


Love to you

[Mary Jo]

Wow Chrissy, I'd say you had a crazy day BUT it sounded very encouraging. Sounds as if things are better than you first thought?

I've had 2 PET/CT scans and they are a piece of cake. They gave me valium before them so you relax as there is a lot of waiting and the test takes a while SO I was flying higher than a kite and felt like I didn't have a care in the world. For someone who never takes ANY meds (unless it's chemo and trust me I fought that also BUT the onc. won) I rather enjoyed the feeling. I thought of asking if I could take any of those "happy pills" home. KIDDING!

I'll pray for nothing but SUPER DUPER results.

Happy Easter to you also,

Mary Jo

[Mary Anne in TX]

Oh Chrisy, you're just wonderful! Let's see, how do we pray for this one? Happy Easter and happy glowing! mary anne

[lexigirl]

Chrisy, I'd say things are definitely looking up! It's awesome that you have the two oncs to share opinions. I am so happy that there is no bone mets! Yesss!! Perhaps no new liver activity, double yess!!!

I hope you have a wonderful Easter.

Hugs,
Lexi

[Chelee]

Chrisy, Things are sounding better all the time. In my first post to you about this I said its probably a degenerative changes going on. I have some in my back. In time..we all get some. With age we all start slowly falling apart. lol I hope the PET/CT gives you all the answers you need once and for all. I say you get the ALL CLEAR. :)

Keeping you in my thoughts and prayers. Hang in there!

Chelee

[chrisy]

When I saw your post on the other thread about the degneration in the spine, it reminded me that on a prior CT they had mentioned this - and at that moment I actually refused to claim that what was showing up on this CT was anything worse than that!

Thanks for the encouragement - you were right!

[Donna]

Hi Chrisy,

So far this week you have copped to being a Santa Cruzian on the cusp of new age thought and a suspicious degenerate! And here all this time I have admired you so! You really make me laugh and your posts are always great reads.

Maybe the Easter Bunny will bring you back your liver absolutely clear - maybe he was out cleaning it up for you and that's why it didn't show up and it's all brand spanking new now.

Seriously, I wish you the best and I am sending you positive thoughts and prayers - covering all bases :-)

Best to You Crisy!

Donna

[IRENE FROM TAMPA]

You are too funny Chris -

I laughed when I read your post about the missing liver lobe. Dont you just love those radiologist reports. In my last scan I lost a tumor which I really dont know to this date if its still there or GONE....since I could not get a good report from this radiologist..... I SWITCHED IMAGING CENTERS to say the least.

Good luck to you on Tuesday. We will both need luck that day as that is the day I get my results from my 3 months scans since last time.

HAVE A VERY HAPPY EASTER

[Chelee]

Chrisy, This is one time I am very happy I was right about something. I had the same thing turn up in my back a few years ago...so it was on my mind...and I do know how *common* it is for all of us as we age. I figured your odds of degenrative chances were pretty good. I am so thrilled for you. (Sorry about your back though.) I will continue to keep you in my thoughts and prayers for your up-coming scans.

Sending all positive thoughts, energy, and much good news to come your way.

Chelee

[Joy]

CHRISY I just had to laugh ( and thank you for the laugh by the way). I am hoping and manifesting for you that the PET/CT debunks any other nonsense and that things are beautiful in there. And that you are all there, you degenerate you! I thank you also for reminding us that even though imaging studies are the gold standard of follow-up for us stage IV-ers they don't always show what is real. It felt like the right thing to read on a day of rebirth, new thoughts and reminders of the victorious spirit.

love and good wishes to you!

[Esther]

I'll be interested in hearing your update on this. I have visions of one of those urban legends where you wake up and you were an organ donor without your consent, ha!

Strange thing to hear, probably just a blip in the interpretation. Hope your scans continue to show clear.

[Kim in CA]

Dear Chrissy,


UCSF is where I had the left lobe of my liver resected. Maybe it was my CT report they were reading!!! :)

Seriously, just hope your next scan is clear. I sure know what you mean about having to do more radioactive cocktails! The CT/PET scan just felt like having a regular CT, no big Whoop...

Nice to hear you are seeing someone as sharp as Dr. Rugo!

Keeping my fingers crossed for clear scans for you. Kim in CA

PS I've had some of those degenerate changes in my spine give me a scare too.

[caya]

Hi Chrisy,

Wishing you all the best for continued good scan results and back to the NED dance ASAP.

All the best
Caya