Just breathe...PET tomorrow, Brain MRI Thursday
 

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.

Re: Just breathe...PET tomorrow, Brain MRI Thursday
 

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

Re: Just breathe...PET tomorrow, Brain MRI Thursday
 

Sending lots of hugs and prayers your way...

Re: Just breathe...PET tomorrow, Brain MRI Thursday
 

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...

Re: Just breathe...PET tomorrow, Brain MRI Thursday
 

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

Re: Just breathe...PET tomorrow, Brain MRI Thursday
 

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.

Re: Just breathe...PET tomorrow, Brain MRI Thursday
 

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

Re: Just breathe...PET tomorrow, Brain MRI Thursday
 

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

Re: Just breathe...PET tomorrow, Brain MRI Thursday
 

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

Re: Just breathe...PET tomorrow, Brain MRI Thursday
 

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

Re: Just breathe...PET tomorrow, Brain MRI Thursday
 

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.

Re: Just breathe...PET tomorrow, Brain MRI Thursday
 

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.

Re: Just breathe...PET tomorrow, Brain MRI Thursday
 

Sending prayers and keeping my fingers crossed for you!

Re: Just breathe...PET tomorrow, Brain MRI Thursday
 

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

Re: Just breathe...PET tomorrow, Brain MRI Thursday
 

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!

Re: Just breathe...PET tomorrow, Brain MRI Thursday
 

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!

Re: Just breathe...PET tomorrow, Brain MRI Thursday
 

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

Re: Just breathe...PET tomorrow, Brain MRI Thursday
 

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

Re: Just breathe...PET tomorrow, Brain MRI Thursday
 

Prayers and more.

Re: Just breathe...PET tomorrow, Brain MRI Thursday
 

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

Re: Just breathe...PET tomorrow, Brain MRI Thursday
 

No news yet, but thank you everyone for your notes of support, peace and calm. Seems to be working because yesterday went as smoothly as expected. I didn't even have too much GI distress after drinking the contrast. And it helps to know the PET staff so well - after 10 years of seeing them every few months we've shared much about our lives and families and how they've grown and changed over the year. It's definitely a comfort.

Just to clarify a couple of questions/suggestions folks have made here. I have literally used and failed or progressed on every Standard of Care BC therapy combo approved and available-Navelbine,Abraxane, Tykerb= Failed. TDM1, Taxol, Ixempra, plus many,many others, including 3 clinical trials=Progressed.
Yes, we can try other drug combos that are approved for other indications, but they would be off label and we would just be going on a wing & a prayer.
Pertuzumab is not available in a "compassionate use" program as it is already approved & available on the market, in addition the manufacturer of any drug still in clinical trial would have to initiate creating a compassionate use program, which involves a whole lot of FDA regulatory hoops to jump through, as well as an increase in production for the drug to be available to the clinical trials as well as the those accepted to the compassionate use program. This was one of the challenges for the TDM1 EAP - once the compassionate use program opened up they had to ramp up production at great cost, to accomodate the population of folks on the EAP.
The grim reality is that I have been fighting this disease for a DECADE. Actively fighting, actively on drug, with only short breaks from treatment due to logistics or bc my counts needed a break. There are not many of us who survive this disease long enough to "out grow" our treatment options - for that I'm amazed and grateful, but we are faced with a very unique dilemna.
So we wait with baited breath for new treatments & drugs to come to market to help us continue down this path of living with this "chronic" disease.
I hope one day soon we can all look to this disease as those with HIV/AIDS can and do - a disease to live with, carefully, mindfully, but for a long, long time.

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
2/10/12 – 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.
6/15/12 - resumed chemo bc counts rebounded!
6/25/12- back on chemo break due to lazy counts again:(

Re: Just breathe...PET tomorrow, Brain MRI Thursday
 

Jessica...I think you may be one of the other Emory girls...

Hang in there...they'll get you the Pertuzumab if you need to try it! I love that they won't give up. The nurse in the infusion center...and that place CAN make me crazy...said they have miracles every day. No reason one can't be for you!!!

Re: Just breathe...PET tomorrow, Brain MRI Thursday
 

Praying for good scan results!

Exhaaaale...Re: Just breathe...PET tomorrow, Brain MRI Thursday
 

Through a very crackly, static-y, speedy conversation, my Onc just called and said "Everything looks pretty good," which is good enough for me. I'll stop in tomorrow to pick up the full report after my Brain MRI, but whatever we're doing is working, in spite of the chemo breaks.
I did receive an unnerving call earlier from the Onc secretary saying they had scheduled an appointment for me to see my Urologist on Monday because of some findings on the PET scan & that my L kidney is underfunctioning, but she couldn't tell me what was on the rest of the report. So ofcourse my brain started to snowball, so she said she would have someone else call me. Then another secretary called me to say no one was available to talk to me today about my results. Talk about FRUSTRATING. I told her as much and she passed word on to my onc, who then called. Phew!
This will be short lived celebration, until I can get over this next hurdle - Brain MRI @7:30am. Fortunately I see the Rad Onc @9, so we'll have results in real time.
And then, I'm prepared to celebrate!
Thanks for being with me through this frenetic, bumpy ride~

Keeping the Faith~

Jessica

Re: Just breathe...PET tomorrow, Brain MRI Thursday
 

Good luck Jessica....
Dawn

Re: Just breathe...PET tomorrow, Brain MRI Thursday
 

Jessica,
As always keeping the faith with you.

Re: Just breathe...PET tomorrow, Brain MRI Thursday
 

I will send positive vibes your way too. You have been through enough.

Re: Just breathe...PET tomorrow, Brain MRI Thursday
 

Praying that the good news just continues and continues...Sending lots of positive energy.

Re: Just breathe...PET tomorrow, Brain MRI Thursday
 

Half way there on the scans and so far so good - fingers crossed the brain comes back as good xx

Re: Just breathe...PET tomorrow, Brain MRI Thursday
 

Glad you don't have to wait through the weekend. sounds like it's good news with just some sort of minor thing, keeping fingers crossed for you.lots of people thinking positive thoughts for you.
hugs and love
sarah