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

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!!!!

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

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

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

Re: Waiting on PET Scan results
 

I agree with Sheila and Tricia- call (and never worry about calling....and calling again).

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

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

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.

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.

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

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.

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

Re: Waiting on PET Scan results
 

and with Steph (!)- our messages crossed in cyberspace.
k

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

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