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

[Vicky]

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!

[chrisy]

Measurement error. LVEF 64%. Toldja so!

[Sheila]

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!!!!

[chrisy]

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

[schoolteacher]

Chrisy, you are amazing.

Amelia

[Ceesun]

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

[Laurel]

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!!!!!!

[Joan M]

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

[Debbie L.]

Thanks for reporting in, both Chris and Sheila. I've been waiting and wondering about both of you.

Yay on the LVEF Chrisy, may the next tumor scans clarify the good news in the same way. So sorry you have to be in waiting mode, again, however.

Sheila, keep us posted on heart med and scan results.

Good vibes to all, but especially to you two this morning.

Debbie Laxague

[NEDenise]

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

[sarah]

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

[ElaineM]

Chrisy. Good job on the LVF !!

[jml]

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

[Soccermom]

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

[Mary Anne in TX]

Smiles and hugs, Chris. ma

[fullofbeans]

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..

[rhondalea]

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.

[chrisy]

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!

[chrisy]

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

At least I'm out of ECHO purgatory!

[ElaineM]

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