Just breathe...PET tomorrow, Brain MRI Thursday

[jml]

HI Friends~
I sit here almost breathless with anxiety and if I weren't so exhausted from last night's redeye from LA to Atl, I'm sure I wouldn't get a wink of sleep tonight.
I've been so fixated on my Brain MRI on Thursday that I totally forgot that I have a PET tomorrow.When they called to confirm the appointment I almost started to cry from sheer anxiety.
This will be my 1st PET scan since starting qd oral Methotrexate/qd oral Cytoxan + Herceptin last January. Yes-January - 6 months ago! Who ever heard of a 10 yr Stage IV patient on active treatment waiting 6 months for a re-staging scan?
The delay was actually by design - because I have/had run out of treatment options after progressing on Halaven/Herceptin last December, we made our last ditch effort to try my current combo to get the disease, which showed up in my R lung & R supraclav & colon, back under control, which fortuntely it has. (The supraclav node melted away and I can't feel the pinching feeling in my R lung anymore and my colon is practically normal again, so we agreed to just continue with the status quo, unless I felt symptoms of progression).
We have been hoping this combo would keep me stable until Pertuzumab was approved, so why bother scanning, because if we found something we had no treatment options to turn to.
But now that Pertuzumab has come to market, in spite of how difficult it might be to get to it, it's time to scan.
And I'm so fearful I can feel my eyes tearing up.
I'm not ready for another challenge if the scans show something's up. This year has already been so challenging for my family, what with running out of treatment options, all the brain stuff-though I'm thankfully currently NED in the Head, my sweet father passing and my sister's major cycling accident which resulted in a 3 day ICU stay with a severe concussion and broken cheek bone. I feel so emotionally fragile and I'm just not used to feeling this way.
So I will follow Emilie's graceful lead, remember Footprints and find the courage to ask the Lord to carry me, because this burden feels too heavy right now for me to bear. And I will trust that I have everything I need to get through this next hurdle, whatever lies in ahead.


Keeping the Faith~

Jessica
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
2/10/12 – Oral Cytoxan WORKING! Melted supraclav node & undetectable by US!
2/14/12 – FINISH 15 rounds WBR
6/12/12- Continuing on oral Methotrexate BID & Cytoxan qpm, but on chemo break
for 3rd week due to low counts.

[KDR]

Jessica, you know I'm with you. You're gonna be good. Karen

[adelay]

Sending lots of hugs and prayers your way...

[Jackie07]

Jessica,

Our footprints are also around you...

Indeed an amazing 10 years! You've now just reached the age when I was first diagnosed in 2003. Let's plan to chat about this 10 years from now...

[NEDenise]

Jessica,
I'm praying the Lord will carry you gently, close to his heart, until you get all your results...and the anxiety passes.
Take a deep breath...and really feel him carrying you.
hugs
Denise

['lizbeth]

Jessica,

I hope you get wonderful news from your scan tomorrow. I know the feeling fragile part, and I have gone through nothing compared to you!

Breathe! May you get some restful sleep and feel stronger for the challenge you face this week.

Scans, ugh! I'll be waiting to hear your results.

[michka]

Jessica, I am thinking of you. I am keeping my fingers crossed until I read your results. You really deserve good news. Hugs. Michka

[sarah]

Jessica we're all hoping to hear good news from you tomorrow.
big hug and love
sarah

[chrisy]

Jessica,
Thinking of you and wrapping you in extra prayers this week. As Karen said, you're gonna be good.

You forgot to mention the insurance snafu...
I have an idea - at the end of the month lets put 2012 behind us and move on. It's been a tough year. We can reset and call the new half-year 2012.5.

Much love,
Chris

[yanyan]

Dear Jessica, I am sending you prayers for a good scan result!

[Rolepaul]

Can you get compassionate care Pertuzumab? How about pairing Herceptin and Navelbine? There are still anumber of treatment options even if your phycians do not think so. Rage against the darkness. Never give up. Hate to Lose. In the pharm business we say mentally being positive is worth two doses of our best treatment.

[ElaineM]

I certainly have my fingers crossed for good Pet/CT and MRI reports.
You have more options than you think you have.
Pertuzamab was approved the beginning of June. It can be used off label for other uses than it was intended.
It is most often used as a first line therapy with Herceptin or TDM1, but I heard some doctors are using it for second as third line therapies.
Also Tykerb can be used with other drugs like Abraxane, Taxol, Navelbine and Iexmpra. It does not always have to be used with Xeloda or Herceptin.
My doctor in Hong Kong recently told me he has been having alot of success recently with Tykerb and Taxol or Abraxane.
Sometimes combining drugs in different combinations allows better synergy than in combinations they were originally approved for.
If your doctor seems to think your options are limited it may be time to consider a second opinion.
All the best to you. Take good care of yourself and get a little more sleep. You earned it.

[Kellennea]

Sending prayers and keeping my fingers crossed for you!

[KDR]

I love Chrisy's idea! Tense times indeed! As many of the posters in this thread know, I've had my dark days this week, too...just when I should be celebrating NED from mid-face down, I'm told I need a brain MRI...Jessica has been there for me in a big way and I'm there for her...and all

Love
Karen

[StephN]

JEssica -
I have been thinking of you and sending good thoughts to shut down scanxiety. If you feel that much better now, I think the cancer is receding.

You may feel like the lead in a Perils of Pauline movie these days, but remember that someone always comes along to save her from the train or whatever.

Go celebrate after the scan!

[Sheila]

Sending positive thoughts Jessica that your scans will show stable with no new surprises...I agree with Chris, it has been a year I am ready get over and put behind all of us! Will be thinking of You tomorrow! Had mine today....and now the wait!

['lizbeth]

Jessica,

I hope the scan went smoothly today. I don't know if you got the news right away, but am waiting to here how it went.

Thinking of you

[Pray]

I'm hoping and praying very hard that you come back here with good news!

[sassy]

Prayers and more.

[Redwolf8812]

Prayers going up, Jessica. He's got your back!