 |
07-07-2010, 08:59 AM
|
#1
|
|
Senior Member
Join Date: Dec 2006
Posts: 415
|
Waiting on PET Scan results
So I just had my PET scan yesterday -
How long do you guys wait to get your results?
I typically send my onc's PA an email saying "just had my PET scan today...can you please keep an eye out for any preliminary info and let me know?" And she's typically amenable and will call me with the report within a day or two and initial ideas about a plan, which we are able to discuss in detail when I see them in the office a few days later.
Just wondering how you guys manage the wait...?
I've now completed 5 cycles of Ixempra and in recent the past three weeks sandwiched in Novalis for a small brain met and Chemoembo with adriamyacin to target a spot in my liver.In retrospect, I think it may have been too much, really pushing my body to the limit because the last couple of weeks and the cumulative effect of all this treatment was really really hard. Scary, sick, weak.
I even asked my doc if I could skip the last round of Ixempra because I didn't think I could make it through another week of feeling so crappy. I sucked it up and did it, but had a really awful week.
I pray pray pray that it has all been worth it, even though I know that we're going to have to re-treat the liver with more adria or RFA.
I've lost the capacity to even believe and hope that NED may be close by...I just pray that the disease load is less, and manageable. And that I can take a break, a nice long break from Ixempra.
I won't be eligible to enroll in a TDM1 expanded access program until August 3 - 60 days after the Novalis. So in the meantime, I hoping for a break from Ixempra, maybe go for another round of chemoembo or RFA for my liver and give my body a chance to bounce back, heal and gain some weight.
Keep the Faith~
Jessica
|
|
|
|
07-07-2010, 12:01 PM
|
#2
|
|
Senior Member
Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
|
Re: Waiting on PET Scan results
Jessica...you are such a trooper and a fighter....there are so many of us waiting for the TDM-1...and hoping it will be our next golden egg....you are one tough girl after all you have been through...I admire your courage and determination....stay strong...you have the upper hand....and call the Dr and ask for the results...in our world, waiting is NOT an option!!!!
__________________
"Be kinder than necessary, for everyone you meet is fighting some kind of battle."
Hugs & Blessings
Sheila
Diagnosed at age 49.99999 2/21/2002 via Mammography (Calcifications)
Core Biopsy 2/22/02
L. Mastectomy 2/25/2002
Stage 1, 0.7cm IDC, Node Neg from 19 nodes Her2+++ ER PR Neg
6/2003 Reconstruction W/ Tissue Expander, Silicone Implant
9/2003 Stage IV with Mets to Supraclavicular nodes
9/2003 Began Herceptin every 3 weeks
3/2006 Xeloda 2500mg/Herceptin for recurrence to neck nodes
3/2007 Added back the Xeloda with Herceptin for continued mets to nodes
5/2007 Taken Off Xeloda, no longer working
6/14/07 Taxol/Herceptin/Avastin
3/26 - 5/28/08 Taxol Holiday Whopeeeeeeeee
5/29 2008 Back on Taxol w Herceptin q 2 weeks
4/2009 Progression on Taxol & Paralyzed L Vocal Cord from Nodes Pressing on Nerve
5/2009 Begin Rx with Navelbine/Herceptin
11/09 Progression on Navelbine
Fought for and started Tykerb/Herceptin...nodes are melting!!!!!
2/2010 Back to Avastin/Herceptin
5/2010 Switched to Metronomic Chemo with Herceptin...Cytoxan and Methotrexate
Pericardial Window Surgery to Drain Pericardial Effusion
7/2010 Back to walking a mile a day...YEAH!!!!
9/2010 Nodes are back with a vengence in neck
Qualified for TDM-1 EAP
10/6/10 Begin my miracle drug, TDM-1
Mixed response, shrinking internal nodes, progression skin mets after 3 treatments
12/6/10 Started Halaven (Eribulen) /Herceptin excellent results in 2 treatments
2/2011 I CELEBRATE my 9 YEAR MARK!!!!!!!!!!!!!
7/5/11 begin Gemzar /Herceptin for node progression
2/8/2012 Gemzar stopped, Continue Herceptin
2/20/2012 Begin Tomo Radiation to Neck Nodes
2/21/2012 I CELEBRATE 10 YEARS
5/12/2012 BeganTaxotere/ Herceptin is my next miracle for new node progression
6/28/12 Stopped Taxotere due to pregression, Started Perjeta/Herceptin
|
|
|
|
|
07-07-2010, 12:57 PM
|
#3
|
|
Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
|
Re: Waiting on PET Scan results
Jessica, I'd agree with Sheila as there's no reason to wait and wonder when he probably has the results to hand. I only had one pet/ct some months ago for suspected mets and expected to be waiting a few days, but was surprised to get a call that same day with results.
I'll be keeping you in my thoughts for good results  x
__________________
Tricia
Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
|
|
|
|
|
07-07-2010, 09:01 PM
|
#4
|
|
Senior Member
Join Date: Feb 2006
Posts: 1,014
|
Re: Waiting on PET Scan results
I just had my PET done today. I am not patient at all with waiting and my oncologist knows this. He usually calls me within 2 days to let me know the results. If not, I call them. I see my Oncologist on Friday and expect him to have the results then. I have seen some patients wait a week or more for results which is not right. The place that does the scans told me the doctors usually get the results in 24 hours...sherry
__________________
Sherry
Diagnosed: December , 2005 at age 44
13+ positive lymph nodes
Stage IV , Her2+, 2 small mets to lungsChemo Started: Jan, 2006
4 months Taxotere, Xeloda, Hercepin
NED since April 2006!!
36 Rads to follow with weekly Herceptin indefinately
8 years NED now
Scans every year
Life is not about avoiding the thunderstorms, it's about learning to dance in the rain!
|
|
|
|
|
07-08-2010, 04:58 AM
|
#5
|
|
Senior Member
Join Date: Sep 2005
Location: MN
Posts: 731
|
Re: Waiting on PET Scan results
Jessica -
I had a pet scan Tues. I see the onc. today(Thurs) and will get the results. I always schedule my scan and follow up dr app't. about 2 days apart so I know I won't have to wait any longer to get the report.
I am hoping your results have good news after all you've been through these last months. You've really hit the cancer hard with lots of big guns. I agree your body - and soul -- really deserves a little chemo break and I hope you can get that now --- even skipping one cycle of ixempra would be helpful - then like you say maybe the t-dm1 could be an option to start. Hoping to hear your results soon -- you are in my thoughts. Pam
__________________
Pam
6/01 IBC er+ her2+stage IIIb; mastecomy
7/01 AC, taxol; radiation
2/02 tamoxifen
9/02 stage IV bone mets femara
1/03 taxotere/herceptin/aredia
6/03 herceptin, aredia & faslodex
1/04 navelbine, herceptin, aredia
2/05 herceptin/aredia
7/05 xeloda/herceptin/aredia
3/07 xeloda/tykerb/aredia
5/08 taxol/avastin/aredia
2/09 gemzar/herceptin/zometa
7/09 Taxol/Carbo/Herceptin, zometa
10/09 navelbine/herceptin & zometa
2/10 herceptin & tykerb & zometa
4/10 add xeloda &aromasin
10/10 dx with dermatomyiositis triggered by cancer
11/10 restart herceptin, tykerb, zometa
12/10 surgery-place rod in R femur to stabilize bone
1/11 radiation to R femur - 20 tx
2/11 2nd surgery - rod in Left femur
2/11 tx eribulen -- suspended dx brain mets
3/11 brain mets wbr 20 tx
4/11 halaven; discontine 8/11 not working
8/11 radiation to left femur 20 tx'
8-9/11 rad to lower spine
9/11 abraxane/herceptin/zometa
9/12 xeloda/herceptin/zometa
12/12 ablation of liver
|
|
|
|
|
07-08-2010, 06:28 AM
|
#6
|
|
Senior Member
Join Date: Apr 2008
Posts: 1,477
|
Re: Waiting on PET Scan results
I agree with Sheila and Tricia- call (and never worry about calling....and calling again).
|
|
|
|
|
07-08-2010, 07:59 AM
|
#7
|
|
Senior Member
Join Date: Jan 2010
Posts: 170
|
Re: Waiting on PET Scan results
I just want to add that my onc personally calls me either the day of the scan or the next day. I never have to call them to get results. My onc. is a cancer survivor and knows how scary the wait can be. Call and keep calling for your sanity.
I also agree that you need to let your body rest. I hope and pray for all of us that T-DM1 is available soon and is another wonder drug.
Rest and watch a good movie.
Emelie
__________________
Nov. 2006-IDC with Her2 +++
A/C for 3 rounds
Dec. 2006- Herceptin and Taxotere
March 2007-MRM with 8 of 14 lymph node involvement
May 2007-36 Rads
Sept. 2007- Stopped Herceptin
Jan. 2010- CT scan shows enlarged lymph nodes in sternum and lung involvement
Feb. 2010-PET scan shows mets to liver, lung, lymph nodes and bone
Feb. 2010- Started Herceptin/Taxol and Zometa
April 2010-PET scan clear. Herceptin and Zometa
June 2010- Stopped Herceptin continue Zometa and still NED
August 2010-Back on Herceptin and Zometa every 3 weeks
August 13, 2010- Had another port placed
August 24, 2010- PET scan clear. Herceptin and Zometa every three weeks
Nov. 2010-PET scan clear
Feb. 2011-Brain MRI clear
March 2011- PET scan clear
May 2011- PET scan clear
Sept. 2011- PET, Mammo, Bone Scan all clear- Herceptin only
March 2012-Recurrence in lungs and tumor around pota hepatis artery. Added Navelbine to herceptin
April 2012- Entered palliative care
June 5, 2012-Entered hospice care
Planning my memorial
|
|
|
|
|
07-08-2010, 01:01 PM
|
#8
|
|
Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
|
Re: Waiting on PET Scan results
Jessica, I just had my PET Tues. and I usually get a call the following day good or bad. But not this time? My next appt is this coming Mon. the 12th so she may be waiting till then. I might give them a call today...but I'm hoping no news is good news as my onc knows I get mad if she doesn't call me especially if it's bad.
I do know in "most"...not all cases our onc's usually have the results in one day...so there really is no reason to make any of us wait. I hope they get back to you soon so that you can start making your game plan..and hopefully enjoy a break from Ixempra. You have really been hitting "it" hard...you've earned a break and then some! If you hear anything let us know. I will be keeping you in my thoughts for "good" news.
Chelee
__________________
DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes.
Rt. MRM on 1-3-06 -- No Rads due to compromised lungs.
Chemo started 2-7-06 -- TCH - - Finished 6-12-06
Finished yr of wkly herceptin 3-19-07
3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07
9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV.
9-28-09 Loading dose of Herceptin & started Zometa
9-29-09 Power Port Placement
10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head.
11-19-09 RT. Femur surgery - Rod placed
12-7-09 Navelbine added to Herceptin/Zometa.
3-23-10 Ten days of rads to RT femur. Completed.
4-05-10 Quit Navelbine--Herceptin/Zometa alone.
5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy.
Results to FISH was unsuccessful--this happens less then 2% of the time.
7-7-10 Recurrence to RT axilla again. Back to UCLA for options.
|
|
|
|
|
07-08-2010, 05:30 PM
|
#9
|
|
Senior Member
Join Date: Sep 2009
Location: Kensington, CT
Posts: 394
|
Re: Waiting on PET Scan results
I just had a PET scan on Friday afternoon and the Dr. called me Tues. afternoon (it was after Monday being a Holiday for the 4th of July). I would say a few days is reasonable.
__________________
06/08/09 - 55, IDC, IIIA, ER+/PR-/HER+++
Nottingham 6/9 - Grade 2 5.2cm, several nodes
06/23/09 - Neoadjuvant - TCH Herceptin til June
10/07/09 - Finished Chemo
10/27/09 - Mastectomy RB
Path Report: RB No residual tumor pCR,
2 of 15 pos - .5mm largest micromets
12/18/09 - Radiation started (28)
02/05/10 - Finished Radiation
01/11/10 - Started Femara
06/22/10 - Finished Herceptin.. My son's 22nd BD. Hope it's a sign! Hoping for the best.
11/15/10 - Started Walter Reed BC Vaccine trial at
1/04/11 - Sibley Mem. Had to withdraw due to met
01/23/11 - Stage IV - Brain Met 1.6cm 1.7cm
02/03/11 - Gamma Knife (2 fracts to minmize necrosis)
03/01/11 - Gamma Knife
6/11 - Necrosis
7/11 - Necrosis stopped & Tumor progression
8/11 = Now think it's really necrosis
9/11 - Avastin every two weeks -- It's working!! Necrosis is shrinking.
12/11 - Necrosis gone AVASTIN worked.
12/11 - Bone &CT found
Oct '10 - Ran Hartford 1/2 Marathon to Thank Dr. Slamon for Herceptin!
|
|
|
|
|
07-09-2010, 08:34 AM
|
#10
|
|
Senior Member
Join Date: Dec 2006
Posts: 415
|
Scans a little worse...me a lot scared
Hi everyone~
Thanks for your kinds words and encouragement.
I'm feeling sad and defeated today as the scan results weren't what we hoped.
There are a few nodes in my belly and lungs that are showing more activity than the previous scan, BUT the liver looks much better and responded well to the chemoembo I had a month ago.
What scares me the most is that I was initially responding beautifully to the 1st 2 cycles of Ixempra -with many nodes even disappearing. But now, in spite of
3 more cycles, rather than cleaning up the rest of the disease, some of it has managed to fire back up.
I just feel so defeated...how am I going to beat this montser?
The plan now is to take a break from Ixempra, stay on Herceptin, repeat the liver directed therapy with more chemoembo or RFA and wait for August 3rd to get here when I'll be eligible to apply for TDM1.
My doc suggested my next Herceptin dose be q3week dose vs. weekly so that I can have some time to go home to Hawaii and rest...though it sort of feels like I'd be going to say my goodbyes.
I've been feeling so physcially awful from all this treatment and so I truly welcome the break. I look forward to gaining some strength back and not always feeling sick, and know when I feel better, my heart and my attitude will be better too.
Today, I'm just sad.
|
|
|
|
|
07-09-2010, 08:46 AM
|
#11
|
|
Senior Member
Join Date: Sep 2005
Location: MN
Posts: 731
|
Re: Waiting on PET Scan results
Jessica - I am disappointed too for you. I was hoping for a complete response for you. Good news that the liver looks much better and maybe a repeat tx there will knock it all out. I'm sorry that the ixempra didn't do a better job on the other areas. I am glad you are able to to the 3 week herceptin -- it will be so good not to have to enter a dr office for a while. I am doing herceptin every 3 wks now & love not having to in weekly since I'm doing the xeloda/tykerb orally.
Do go to Hawaii, rest, relax, visit family & friends and rejuvenate -- you deserve the R&R more than anyone right now. Please don't dwell on the 'saying goodbye' thoughts. This isn't good-bye to anything ---- this is just a break to get you closer to t-dm1. August 3 is less than a month away!
Hold on to hope and have faith - things can and will improve. Pam
__________________
Pam
6/01 IBC er+ her2+stage IIIb; mastecomy
7/01 AC, taxol; radiation
2/02 tamoxifen
9/02 stage IV bone mets femara
1/03 taxotere/herceptin/aredia
6/03 herceptin, aredia & faslodex
1/04 navelbine, herceptin, aredia
2/05 herceptin/aredia
7/05 xeloda/herceptin/aredia
3/07 xeloda/tykerb/aredia
5/08 taxol/avastin/aredia
2/09 gemzar/herceptin/zometa
7/09 Taxol/Carbo/Herceptin, zometa
10/09 navelbine/herceptin & zometa
2/10 herceptin & tykerb & zometa
4/10 add xeloda &aromasin
10/10 dx with dermatomyiositis triggered by cancer
11/10 restart herceptin, tykerb, zometa
12/10 surgery-place rod in R femur to stabilize bone
1/11 radiation to R femur - 20 tx
2/11 2nd surgery - rod in Left femur
2/11 tx eribulen -- suspended dx brain mets
3/11 brain mets wbr 20 tx
4/11 halaven; discontine 8/11 not working
8/11 radiation to left femur 20 tx'
8-9/11 rad to lower spine
9/11 abraxane/herceptin/zometa
9/12 xeloda/herceptin/zometa
12/12 ablation of liver
|
|
|
|
|
07-09-2010, 10:48 AM
|
#12
|
|
Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
|
Re: Waiting on PET Scan results
Dear Jessica -
Pam had the right words. You are NOT saying goodbyes just yet. This is the Ixempra weary you talking.
In 7 to 10 days you will feel a bounce when you don't have the big I to knock you back. Play off that bounce and take it as it comes.
Remeber you still have some of the I in your system so you are not without some treatment.
Get your paperwork rolling for T-DM1 and then go enjoy the islands.
__________________
"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.
MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
|
|
|
|
|
07-09-2010, 10:50 AM
|
#13
|
|
Senior Member
Join Date: Apr 2008
Posts: 1,477
|
Re: Waiting on PET Scan results
Jessica,
I agree so much with Pam. Take a much needed break, relax, and enjoy the company friends and family. August 3rd IS right around the corner and you want to be strong and rested by then. Take care and know that you can be strong.
Best,
karen
|
|
|
|
|
07-09-2010, 10:51 AM
|
#14
|
|
Senior Member
Join Date: Apr 2008
Posts: 1,477
|
Re: Waiting on PET Scan results
and with Steph (!)- our messages crossed in cyberspace.
k
|
|
|
|
|
07-09-2010, 12:08 PM
|
#15
|
|
Senior Member
Join Date: Jan 2008
Location: Evergreen, Colorado
Posts: 454
|
Re: Waiting on PET Scan results
Dear Jessica,
I just saw your post regarding this set back. It speaks volumes about what a fantastic person you are, as you responded to my plea for support while you are concerned about your own issues. You amaze me!!!
Getting that liver back in shape is good news, as it will position you well for the TDM-1. Just think, less than one month away. I am glad that you will have some time to refresh and focus energies on gaining access to TDM-1.
Please enjoy your time in Hawaii...the positive energy of family and friends is so healing. Soak up the warmth of their love and use it to revitalize. It is well documented that social interaction has an enormous impact on our well being.
Go and enjoy and know that we are thinking of you while you are gone.
Love...Lori
__________________
2007
Oct - Diagnosed - Stage IV 5 c.m. IDC - Left Side er/pr- Her2+++ Node + 2/14 - Single Liver Met Double Mastectomy Nov - Begin T+H 2008
Feb-Complete 6 cycles- T&H- NED
March - Continue - Herceptin Only
April - Rads for 6 weeks
2009
Continue Herceptin - Continue NED
April - Recurrance- 3 cm. Liver Met
May - Cryosurgery
June - November - Abraxane + Herceptin
Aug - PET/CT - CTC = 0 Back to NED
2010
January - Continue NED
July - Recurrance - 3 cm Liver Met CTC=1
August - Cryosurgery #2
August - November Navelbine
November - Back to NED - End Navelbine
2011
Feb - Recur - 4 cm Liver Met - Same Left Lobe
March Surgery it is -Couldn't get a clean margin
July - Confirmed continued liver involvement
August - Begin Herceptin + Tykerb
October - Mixed results from H+T
Add Abraxane + H + T - Nov - April
2012
January PET Scan - It's working!!
April - Back to NED
July - Recurrance
August - Begin TDM-1 Trial (Taxol + TDM-1)
|
|
|
|
|
07-09-2010, 12:33 PM
|
#16
|
|
Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
|
Re: Waiting on PET Scan results
Jessica,
Sorry your report showed mixed news. But as you know, that's the way this goes - steps forward, steps backward, and sometimes just holding. Take the encouraging news on the liver, and I like the additional steps you are considering there; and keep working on other approaches for the rest of it.
Pam and Steph are right, and I can't say it any better. When you feel crummy it just makes everything harder. Enjoy the trip home, rest and laugh and breathe a lot...
then head back into the battle.
Much love
Chris
__________________
Chris in Scotts Valley
June 2002 extensive hi grade DCIS (pre-cancer-stage 0, clean sentinal node) Mastectomy/implant - no chemo, rads. "cured?"
9/2004 Diag: Stage IV extensive liver mets (!) ER/PR- Her2+++
10/04-3/05 Weekly Taxol/Carboplatin/Herceptin , complete response!
04/05 - 4/07 Herception every 3 wks, Continue NED
04/07 - recurrence to liver - 2 spots, starting tykerb/avastin trial
06/07 8/07 10/07 Scans show stable, continue on Tykerb/Avastin
01/08 Progression in liver
02/08 Begin (TDM1) trial
08/08 NED! It's Working! Continue on TDM1
02/09 Continue NED
02/10 Continue NED. 5/10 9/10 Scans NED 10/10 Scans NED
12/10 Scans not clear....4/11 Scans suggest progression 6/11 progression confirmed in liver
07/11 - 11/11 Herceptin/Xeloda -not working:(
12/11 Begin MM302 Phase I trial - bust:(
03/12 3rd times the charm? AKT trial
5/12 Scan shows reduction! 7/12 More reduction!!!!
8/12 Whoops...progression...trying for Perjeta/Herceptin (plus some more nasty chemo!)
9/12 Start Perjeta/Herceptin, chemo on hold due to infection/wound in leg, added on cycle 2 &3
11/12 Poops! progression in liver, Stop Perjeta/Taxo/Herc
11/12 Navelbine/Herce[ptin - try for a 3 cycles, no go.
2/13 Gemzar/Carbo/Herceptin - no go.
3/13 TACE procedure
|
|
|
|
Posting Rules
|
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts
HTML code is Off
|
|
|
All times are GMT -7. The time now is 02:07 PM.
|
Linear Mode
