NEW POOPY UPDATE to NEW update on chrisy...scanxiety replay on the horizon
 

UPDATED INFO ON REPLY #38. DEBBIE L YOU ARE RIGHT, I SHOULD HAVE POSTED A NEW THREAD!



Many many thanks for all the positive thoughts and good wishes. I read and reread all the posts and PM's and they really helped calm me down. Thank you, my friends!

I know a lot of people have been waiting to hear good news from the scan last week; and in honor of the recent Facebook IPO, I'll just say:

chrisy is in a relationship with a stupid tumor...and it's complicated!

Complication #1: The Pet/CT results were interesting, and confusing. On the CT side, the single lesion in my liver was increased in size - or maybe only slightly depending on who was measuring it. The increase in size was not enough to meet the RECIST criteria proving progression. The PET part showed greatly increased metabolic activity with SUV nearly doubling in the lesion and a couple of nodes.

The "it's complicated" part is interpreting the results. Are these changes reflecting a) progression, b) resolution of having bled into the tumor and surrounding tissue during the biopsy or c) possible necrosis and/or "flare" caused by death of the cancer?

So, the scan indicates that the new drug ISN'T working, or that it IS working. Sheesh!

Complication #2 - the ECHO, which showed my LVEF dropping a significant % although still in the normal range. However, a different tech did it and in the report conclusions it says the change is likely due to difference in technique. I think the new LVEF number is bogus and that things haven't really changed significantly.

I love to have multiple high profile clinicians and researchers exchanging emails all night and having meetings all morning about me because, after all, I AM the center of the universe (hah!).

In the end, the recommendation was to do one more cycle of treatment, redo scans in another few weeks and then hopefully the picture will be more clear. Should this not be the drug/dose for me, a couple of plan B's are under consideration.

The most important "good" news is that things aren't going wild all over the place; still the same dumb tumor only (maybe) bigger and pissed off. And my oncologist feels we will be able to find something to shrink it then zap it with RFA. All of this helped me regain hope (believe it or not) and also got me pissed off and into full #$%^ cancer mode!

So stay tuned, sorry but we need another 3-4 weeks of those good vibes!!!!!

Re: NEW update on chrisy...scanxiety replay on the horizon
 

Good, good, good vibrations from your friend on the East Coast. I am hoping for pissed off and dying. Oh yeah.

Re: NEW update on chrisy...scanxiety replay on the horizon
 

Well, Chrisy, I don't think the tumor has long. Knowing you, your team and history, you'll come up with the right plan of action. Glad this is behind you, and you can move ahead in that glorious pissy mode that always gets the job done. Thinking of you always,
Karen

Re: NEW update on chrisy...scanxiety replay on the horizon
 

Well, since it is unclear if the new drug is working or not, let's all get on the IS Train!!!! Same with the ECHO. We will go with the difference in techniques until told otherwise. I recently had a big old increase in tumor markers only to find out they were using a different measurement.
Keep the faith.

Re: NEW update on chrisy...scanxiety replay on the horizon
 

You have them.
k

Re: NEW update on chrisy...scanxiety replay on the horizon
 

Wow !! Things can get pretty confusing at times.
I agree with your doc about doing one more treatment and then trying to do the same scan. Perhaps your doc can get a different radiologist and a different technician to work with you the next time you do these tests. Unfortunately the ability of the radiologists and technicians and the condition of the machines do play a part in the diagnosis and in the results. After all these machines are operated by human beings who have the same ups and downs of life that we have. Maybe the radiologist who read the films was having a stressful day. Machines have their own issues and sometimes don't work so well. Maybe your body was doing stuff they never saw before. Our bodies are individuals after all !!
In any case hang in there and keep going as you have always done. The next scan date will be here before you know it.
Take good care of yourself and enjoy life as you wait for the next scan.

Re: NEW update on chrisy...scanxiety replay on the horizon
 

I agree with your doctor. I was the first HER2 member to receive TDM-1, but it was delayed several months from around Feb. to Sept. The trial had closed and I needed to wait for another to open. I couldn't have any treatment during those months. The bone mets were growing in my hip, and I was in significant pain. So, Christy, the reason I did not qualify for the first trial was because the machine was malfunctioning and gave an incorrect muga score that was too low. I also had that to worry about until I learned the truth several months later.

I feel that all will be well with you again soon, and you will reach NED!!!
Best,
Barbara

Re: NEW update on chrisy...scanxiety replay on the horizon
 

I vote for FLARE - cells taking it where it counts!

As Barbara and Elaine remind us, machines and new techs are factors in inaccurate results.

Can they give you another MUGA, or do you have to wait?

Re: NEW update on chrisy...scanxiety replay on the horizon
 

I just got a message that they are going to redo the ECHO tomorrow....gotta hurry up and go workout!

Re: NEW update on chrisy...scanxiety replay on the horizon
 

Go get'em Chrisy! Glad you are in major pissed off mode!

Sending good vibrations from the Great White North to you -

xoxo
all the best
caya

Re: NEW update on chrisy...scanxiety replay on the horizon
 

Go workout!! That always puts me in the conquering mood! Bring it, and you'll be ready. Positive thoughts and positive vibes headed your way. Janet

Re: NEW update on chrisy...scanxiety replay on the horizon
 

Chrissy,

Well, whether you meant to crack me up or not, you did! That was funny stuff and I love that you and your tumor are temperamental and pissed off! I am hopeful that things are happening to that tumor and it is dying a slow, but certain death.

As for your echo, I had several weird echo episodes depending it seemed on who was doing them. I am believing yours will be fine tomorrow.

And you ARE the center of our universe..... ;)

Re: NEW update on chrisy...scanxiety replay on the horizon
 

Yay Chrisy,

So glad you are feeling ready to fight...that's the spirit! Glad you will have another heart function test---hope this one is better. Your onc sounds very encouraging, and on top of things. Praying for great results from your repeat scans.

Re: NEW update on chrisy...scanxiety replay on the horizon
 

Vibes on the move!

Re: NEW update on chrisy...scanxiety replay on the horizon
 

Chrisy,
Your energy alone should scare that tumor - Let alone you are pissed off!!! As usually you will go get em.
Sending you strong vibes.

Warmly,
jean

Re: NEW update on chrisy...scanxiety replay on the horizon
 

Chrisy,
I am glad that the pesky tumor is going to get hit with another round of the new drug combo. Wouldn't want to toss out a potentially winning combination due to technical and human limitations of scanning processes.

But then...easy for me to say...the hurry up...no wait....hmmm??? mode certainly is stressful.

I am glad that those fancy pants Drs understand that you are the center of the universe. You will have to give us a class on how your coached them on this fact.

Here's to another powerful cocktail...cheers....Lori

Re: NEW update on chrisy...scanxiety replay on the horizon
 

An endless supply of good vibes coming your way. Your resilience, as always, is inspirational and amazing!

Re: NEW update on chrisy...scanxiety replay on the horizon
 

Well, Chris, you always have been a trail blazer! I'm believin' for the best possible outcome! Wish you could work out for me! ma

Re: NEW update on chrisy...scanxiety replay on the horizon
 

Re: NEW update on chrisy...scanxiety replay on the horizon
 

Lol pink!

But tumors don't deserve names, I think,

Re: NEW update on chrisy...scanxiety replay on the horizon
 

I marvel at how I catch myself laughing my way through all of these posts- yet am completely cognizant of the fact we're not taking anything lightly. But I seriously am taking some lessons from you in the indomitable spirit category! Sending you loads of positive vibes!

Re: NEW update on chrisy...scanxiety replay on the horizon
 

Measurement error. LVEF 64%. Toldja so!

Re: NEW update on chrisy...scanxiety replay on the horizon
 

OK, its official...I have LVEF Envy...my last reading was 36%.....for a moment, i thought they were quoting my bust size, or my waist size....
Guess that is what I get for 9 straight years of herceptin!!! Keep hoping it will improve with the heart meds....going off Herceptin is NOT an option for me..

Now, back to your STUPID TUMOR!!! I will call it NERD...cuz it is Really(R) in the way of NED, the other guy you long for....

Sending positive vibes, prayers and fairy dust that the next scan will show stellar results!

I find out my scan reports and fate tomorrow!!!!

Re: NEW update on chrisy...scanxiety replay on the horizon
 

Sheila, I stand corrected! That is a good name for a tumor!

Re: NEW update on chrisy...scanxiety replay on the horizon
 

Chrisy, you are amazing.

Amelia

Re: NEW update on chrisy...scanxiety replay on the horizon
 

Well, I can think of one....anyway Chrisy...good vibes galore! Ceesun

Re: NEW update on chrisy...scanxiety replay on the horizon
 

Happy news on the echo, Chrissy! Sheila, I am concerned about that 36. When do you have another? I guess I am wondering if yours is legit as so many are errors.

On a happy note, 6 WEEKS UNTIL SPRING!!!!!!

Re: NEW update on chrisy...scanxiety replay on the horizon
 

Chrissy,

Well, I guess it ain't nothing until the ump calls it. And a strike would be the best. We cancer survivors are always dealing with waiting for the next test result.

I had a lot of confusion after having the lung RFA. SUV was hitting the roof due to inflammation initially and then afterward to a fungal ball growing in the cavity. But at first nobody knew exactly what was going on, or whether the tumor was growing back.

I would agree about the LVEF perhaps being bogus. When I restarted Herceptin in 2007 after not taking it since 2004, my first reading was 70% and, for various reasons, I felt that the percentage was incorrect. The second reading 3 months later was 60%, more than 10% lower, and my onc took me off H for 3 months. Ouch!

I would agree with Sheila: stupid tumor. And it's days are numbered.

Joan

Re: NEW update on chrisy...scanxiety replay on the horizon
 

Re: NEW update on chrisy...scanxiety replay on the horizon
 

Chris,
Good vibes headed your way!! As many as you can absorb!
Great LVEF!! Like Sheila, I too have ejection envy! You rock!

Keep fighting, my friend!
Denise

Re: NEW update on chrisy...scanxiety replay on the horizon
 

Hello Chisy,
Had a discussion with a cancer buddy last night that echos etc are too subjective, sort of like judging at the olympics the gymnastics versus track. I hope you get on TDM1, it sounds like the future....for the moment. Can they irradiate the liver tumor?? have read in the newspaper that irradiating the mets can be helpful but don't really know about it.
health and happiness
lvoe sarah

Re: NEW update on chrisy...scanxiety replay on the horizon
 

Chrisy. Good job on the LVF !!

Re: NEW update on chrisy...scanxiety replay on the horizon
 

Chrissy~
Sending big, bright powerful vibes your way for as long as you need them and more!

Keep the Faith!

Jml
Dx-5/17/02 - 33 yo; Stage IV
L IDC w/single liver met
1) Herceptin + Navelbine x 8 weeks - No response; progress to innumerable,immeasureable liver mets
2) ISIS 2504 + Herceptin - 6 mos, partial response
3) Taxol + Herceptin x 13 weeks to NED!
NED for 1 year
9/04 - Single liver lesion recurrence
Taxol + Herceptin - on/off to beat back lesion
12/05 - R Hepatectomy; Liver NED until 2009
3/06- Local recurrence - Left breast, IDC & DCIS, but holding treatment while continue to heal from Hepatectomy.
12/06 - L mastectomy + reconstruction through 8/07
10/07 - Recurrence - supraclav nodes
4) Gemzar + Herceptin - on/off controlling nodes thru
9/08 - 7wks Rads to supraclav nodes
10/08 - Acute Renal Failure - nodes in belly stricturing kidneys. placed permanent ureteral stents
Back on Gemzar + Herceptin, but no longer responding.
5) 05/09 - Tykerb + Xeloda - partial response x 5 mos
6) 10/09 - Xeloda + Herceptin - no response, disease progresses
7) 2/10- Ixempra + Herceptin - partial response x 12 wks.
Discovered single brain lesion x 4mm & liver lesions growing while screening for TDM1 + PI3Kinase study.
6/10 - Novalis to treat brain met - SUCCESSFUL!
8) 6/10 - Chemo-embo w/Adriamyacin to de-bulk liver lesion.
9) 8/10 - Screened & Started TDM1 EAP
Immediate response, disease in belly responds dramatically.
2/11- questionable progression of lung nodules
Discontinue TDM1
10) 3/11 - PI3Kinase + Herceptin - intial good response in 1st 6 weeks but LFT's elevated.
11) 7/11-Discontinue PI3Kinase + Herceptin study;
Disease progression - 2 small lesions in colon – docs have never seen this before in BC
11) 8/11 –Start new combo Halaven+Herceptin
10/14/11 -Completed 3 cycles (9 wks)Halaven+Herceptin...
10/18/11 - Scanxiety time -1st scans since starting this regimen
Good interval response, continue on H+H!
10/25/11 – new 2mm questionable spot in brain? Due to Novalis or new disease?
Re-scan in 8 weeks.
1/3/12- Disease progression; 50%increase size & SUV-R lung, middle lobe 6cm lesion.
R supraclav node multiple, miscellaneous nodes in belly. Colon lesions fired up.
12)Herceptin+ metronomic Cytoxan + Methotrexate.
…on a hope & a prayer. Only chemo I haven’t been on is Taxotere.
Hurry up Pertuzumab & TDM1!
Follow Up Brain Scan on 1/18/12…pleasepleaseplease be okay. I can’t take much more.
1/18/2012- 8 new spots in 8 weeks since last Brain MRI
one 2cm spot in brain stem, one 2cm spot in R temporal lobe.
No symptoms. Thank God!
1/25/12 – Start WBR x 15 rounds
2/14/12 - FINISH 15 rounds WBR:)

Re: NEW update on chrisy...scanxiety replay on the horizon
 

I'm going with the "flare..it's pissed off cause its dying" school of thought!
Hugs and love to you, Chrisy!

Re: NEW update on chrisy...scanxiety replay on the horizon
 

Smiles and hugs, Chris. ma

Re: NEW update on chrisy...scanxiety replay on the horizon
 

Good on you Chrisy the fact that it is hard to interpret is good as you mention it is not going wild at all.. as to naming the b@s*@*!d wellsheila's one is slightly too kind for my liking :) anyway I am please for you lvf and all..

Re: NEW update on chrisy...scanxiety replay on the horizon
 

Boy, I hate these link spammers, but I guess I owe this numbnut thanks because s/h/it (and what an appropriate abbreviation that is!) helped me find this thread again.

Just want to say, Chris, what I would have said when you first posted (if I hadn't been so loopy): I'm glad the low LVEF was in error, and I've got my fingers (and toes and, for better or worse, my brain) crossed for excellent scans in the follow-up.

If all the good thoughts and prayers coming your way have power (and I believe they do), you'll sail right on through this.

Re: NEW update on chrisy...scanxiety replay on the horizon
 

Well....guess I'd better check in - rather than start a new thread, I'll duck in under the radar here.

The tiebreaker CT scan, which they did last week, showed a little bit more growth - and basically confirms that this drug (at this dose at least) is not doing the job for me. Disappointing, but not surprising and of course it's good to know and move on.

The good news is, barring surprises on next week's chest CT (they only looked at the abdomen on this one - aarghh!), we are still talking about a solitary tumor and node in the liver. The bad news is that it's now about golf ball size. I've always been a lousy golfer, but hopefully we can send it packing with a good big wood. Maybe like that one Rodney Dangerfield had in Caddyshack.

The goal is (still) to shrink that sucker then whack it locally with RFA or surgery. So the new shrinkage plan is chemo (gemzar)/herceptin - or taxol/herceptin/AKT inhibitor in yet another trial.

I'm going for the trial (although it wasn't until after I signed the consent that Sheila told me gemzar wasn't hair challenging!) because although I haven't had gemzar, I did well on taxol in 2004. AND I saw some interesting data at SABCS on the AKTi's. I think there have been some molecular changes, so hitting the growth pathways at another place makes sense.

This is still a phase 1 trial, but more mature and dosing at the MTD. I'm just praying I can qualify this time (platelets still bounce around a bit, sometimes a tick below the cutoff) and that finally we can get headed in the Costanza direction.

I wish I rocked the scarf/wig thing as well as some of my friends...time to scare up some new "hair" that doesn't look like a fright wig!

Re: NEW UPDATED NEW update on chrisy...scanxiety replay on the horizon
 

OH, and for the record, ECHO #3 in February (drum roll, please....) 66%

At least I'm out of ECHO purgatory!

Re: NEW UPDATED NEW update on chrisy...scanxiety replay on the horizon
 

Great, great job on the LVF !!!!!!!!!!
Now go scare that cancer out of the universe!!