Starting WBR tomorrow...nervous & scared
 

Hi My Friends~
So I start the 1st of my 15 cycles of WBR to zap these 8 lesions on my brain - 1 of them on my brainstem.
I'm nervous and scared.
I was just fine earlier today...I was resolute, confident and having a great day, enjoying lunch with friends, an unbelievably beautiful sunny day here in Atlanta.
Then I realized that I don't really know how this WBR stuff works...they made a mask for me on Friday, but I didn't ask many questions about the actual radiation, just asked about side effects, cognitive deficits, fatigue, etc.
And now after reading posts from folks on another site, I'm scared.
Not scared of the 15 rounds, but of how bad the fatigue may be, how long the fatigue will last, how much assistance will I need as I recuperate?
What if it doesn't work? What about the disease in the rest of my body...?
Oh I can feel the snowball bearing down on me and hate this feeling.
I believe that knowledge is power, and I so need to hear your wisdom my friends.

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. Suggested tx – WBR x 15 rounds
1/25/12 – Start WBR

Re: Starting WBR tomorrow...nervous & scared
 

Jessica,
I am not an expert in WBR, but as you know, I do have experience with feeling strong, confident and at peace one moment...immediately prior to completely melting down. One year I thought it would be a fabulous idea to give up fear for Lent.. Of course, that backfired badly and all I could think of was the fear! I wish I cold give you a big hug right now.
One thing I always try to remember at times like this is to BREATHE. Repeat. Repeat again....

As i think it was Karen's dad would say, "you're gonna be good". And so you are.

I'll be thinking of you tomorrow

Much love, my friend

Re: Starting WBR tomorrow...nervous & scared
 

I agree with Chrisy. Breathe !!!!!!!!
I know nothing about radiation, but I would say to make sure you get your concerns addressed and your questions answered before you start the actual radiation. Tomorrow might be a good time to do that.
Take very good care of yourself during the radiation.
Pamper yourself whenever you can.
You deserve it !!!
Keeping my fingers crossed for your and a hug goes out to you from me.

Re: Starting WBR tomorrow...nervous & scared
 

Well, your first mistake was reading on other boards!!
Seriously, I can imagine the anxiety you must be feeling right now, the anticipation. Usually that is worse than the actual event.
The first day of any new thing is full of uncertainty. I remember that the cancer center psychologist told me that as soon as my first treatment started it would feel "like a balloon had been pricked and all the anxiety poured out" Once the ball is rolling, it was better.
Reading your signature, you have been through ALOT. And you DID get through it all. You are an amazing person. You did it one day at a time. One proceedure at a time. And you will do it again. We will be in the room with you. Keep the faith

Re: Starting WBR tomorrow...nervous & scared
 

Jessica,
Just put your life in God hands an he will do. Love you dear and send you a big and strong hug. I will be prayingfor you first thing tomorrow morning.

Re: Starting WBR tomorrow...nervous & scared
 

Those suckahs are going to start dying tomorrow. Hold that thought.

Re: Starting WBR tomorrow...nervous & scared
 

Gods blessings Steph, I also will be hoping and praying that all will go well for you.Your Friend,Nancy

Re: Starting WBR tomorrow...nervous & scared
 

Hi Jessica!

U are a Hero as well! I would be nervous as
well - totally realistic concern. I know WBR
has worked for many - holding on tight
to that thought for you.

Hugs,

Kim

Re: Starting WBR tomorrow...nervous & scared
 

I hope everything went well today. Sending prayers and positive energy...

Re: Starting WBR tomorrow...nervous & scared
 

Jessica, always close your eyes BEFORE they put the mask on and just visualise those pesky brain lesions being zapped to dust by the radiation. You will get through the fatigue, it takes a while before you feel tired. So for the first week you might feel 'normal'. Everyone is different and reacts differently. I wish you well.

Re: Starting WBR tomorrow...nervous & scared
 

Jessica,I wish it was already over but think each time of the "stupid mets" being blasted. I hope you will not feel too tired. Hugs, hugs, hugs. Michka

Re: Starting WBR tomorrow...nervous & scared
 

Jessica, from me too hugs hugs hugs hugs. No life is not fair and living in fear and sometimes pain is so hard you have been a trooper here I have nothing butr admiration for you. All you can try to do I think is to let go of the fear what ever will happen will happen whether you are in fear or not. Yes you will be radiated and its really horrible but others have been ok through it and I hope you will be one of them, in some stupid ways there is nothing else to do. The fear is telling you to avoid more treatments and WBR is scarry but all you can do is visualise these tumours going, we love you and pray/send good vibes to you.

Re: Starting WBR tomorrow...nervous & scared
 

Jessica,

My prayers are for you to smack those invaders down permanently! Your fear is only a natural reaction to the UNKNOWN and that really cannot be argued away. The knowledge you now have will allow you to pray against those side effects. In other words, you know what to ask for, so ask away and if you share with us your worst fears we too can pray those symptoms never manifest from your treatment. Tell us what to pray for and we will pray specifically, so for starters I will pray you suffer only mild fatigue or even better, ZERO fatigue! Also, I am asking that in addition to great success this treatment causes ZERO neurological side effects and that you feel well enough to manage your care and affairs independently.

You are one tough cookie, but even the bravest quake at the thought of WBR. I know you are up to the challenge however daunting. Let us know how the mask fitting goes and when you get your first round of zaps.

Sending love and prayers you way.

Re: Starting WBR tomorrow...nervous & scared
 

Hi Jessica
Just wanted to say I regularly sit next to a lady who had WBR 3 years ago and is doing great!

Take care and don't put yourself under pressure to be well before your body has time to heal.
Hugs
Ellie

Re: Starting WBR tomorrow...nervous & scared
 

Re: Starting WBR tomorrow...nervous & scared
 

Thinking and praying for you, Jessica.

Amelia

Re: Starting WBR tomorrow...nervous & scared
 

Jessica-

Praying you feel okay...and visualizing your cancer being pulverized!

Prayer, hugs and healing thoughts coming your way.

Maureen

Re: Starting WBR tomorrow...nervous & scared
 

Thinking of you keeping you in my prayers.

Re: Starting WBR tomorrow...nervous & scared
 

Jessica sending positive vibes to you today and keeping you in my prayers ((((hugs))))

Re: Starting WBR tomorrow...nervous & scared
 

Hi Jessica,

I'm adding my prayers and healing thoughts to the list. Take each day/minute at a time, be gentle to yourself, and act like a Jedi with the force helping the radiation kill those invaders once and from all.

May the force be with you!

Marcia

Re: Starting WBR tomorrow...nervous & scared
 

Jessica,

I am holding you in my prayers and thinking all kinds of positive thoughts for you! You have so many of us walking this with you, I hope you can take strength from feeling our positive energy and vibes coming your way! Sending lots of light and love!

Re: Starting WBR tomorrow...nervous & scared
 

Keeping you in my prayers and sending positive energy your way.

Re: Starting WBR tomorrow...nervous & scared
 

Jessica,

Just saw your posting on the Supplement... thread. I'm glad you'd braved your nervousness and reached out to help others.

I remember being 'nervous and scared' before my craniotomy in 1990. It's a natural reaction and seems to be an unavoidable process. It did get better - especially when the procedure is done.

My 2 cents will be to stay as active as possible. Exercise helps stimulate blood circulation which speeds up healing and help the 'synapses' of the brain cells.

Also to stay as happy as possible. Endorphine in our brain does a lot of wonders...

Sending you good vibes.

Re: Starting WBR tomorrow...nervous & scared
 

Jessica,

Hoping those first zaps were mighty destroyers of bad and illuminators of your strength. You have knowledge and know that it is power tinged fear--but hopefully a fear that spurs your adrenalin and girds your inner strength.

Praying your days are good and your nights are peaceful. Keeping you in my heart.

Re: Starting WBR tomorrow...nervous & scared
 

I hope it went well and you feel good. Chin up, keep going, stay positive, and I like the thought to stay happy from Jackie. You are in my thoughts and prayers.

Re: Starting WBR tomorrow...nervous & scared
 

Thank you everyone for your chorus of voices:)
All your compassion, encouragement & prayers have helped me grab hold of my own confidence and courage to climb on to that table for these first 3 days & know that I only have 12 left to go.
That mask they put on you to hold you're head in place is pretty intimidating - the first day it felt like they were saran wrapping my head to the table! But, with eyes closed & deep breaths (through your nose b/c I can't even seperate my lips) I use your
visual imagery and see those Rads blasting sunlight & healing rays into those dark, lightless areas that I visualize are the mets.
No fatigue yet, but I do think the dexamethasone is making me feel a little buzzy and jittery and which makes a solid, restful night's sleep a challenge. I haven't had
any problems with heartburn or GERD, so I passed on the $200 Rx for Nexium and will just see how I do and maybe opt for something OTC.
Thank you again, everyone. Knowing your prayers surround me have helped in that magical, mystical, faithful way that nothing else can.

Keeping the Faith~

Jessica

Re: Starting WBR tomorrow...nervous & scared
 

Glad to hear from you, Jessica.

Amelia

Re: Starting WBR tomorrow...nervous & scared
 

Today starts another round and, by the end of this week it will be nearly over. Twinkle, twinkle little mets - good bye and good riddance.

Yeah - the decadron is the worst, just when you are leveling out, the next dose kicks in. I drank a lot of the Sleepytime tea.

Lots of good vibes being sent for max effect of this treatment!

Re: Starting WBR tomorrow...nervous & scared
 

Jessica, I'm so glad you posted. I do picture you in that strong stance in your picture here and giving your cancer the what fors! What a wonderful women you are! I want to be just like you~

Re: Starting WBR tomorrow...nervous & scared
 

Glad to hear from you Jessica,

I sincerely hope the rest of the treatments go smoothly too

Many hugs

Jenny x

Re: Starting WBR tomorrow...nervous & scared
 

Hey, Jessica, just wondering how you are feeling? Do you have an update on your "zapping?"

Hoping you are doing well and feeling up to letting us know how things are going.

Re: Starting WBR tomorrow...nervous & scared
 

Hi Jessica;
Jumping in to wish you well. Thinking and praying for you. Did I read you signature correctly - 10 years out. The WBR is just a bump in the road for you. You're awesome! Love,
Kris....

Re: Starting WBR tomorrow...nervous & scared
 

Hi Everyone~
Thank you all for being with me through these 15 rounds of WBR.
I finished on Tuesday, Valentine's Day, which was a nice day to celebrate.
And so now the 4 week wait for the follow up MRI begins...

I feel like I tolerated the treatment well - no major fatigue, but I do feel off-kilter from the Decadron. I'm weaning off over the
next 15 days, so I'm sort of waiting to see if as the dose decreases some other side effects will reveal themselves.
I hope not. I'm looking forward to these puffy cheeks to go down and start feeling like myself again.
My hair started falling out at Day 10. It's weird - not like when it falls out from chemo. I just stand in the shower and rub & pluck the hair out of my head. I'm bummed to lose my hair again, just as it was starting to grow back after losing it last August on Halaven.
Losing hair twice in 6mos - that's a new record for me, and a total of 4 times lost now in these 10 years.
At least my eyebrows & eyelashes have come back in and aren't going to fall out.
I'm off to San Francisco and Hawaii for 2 weeks to be with my family and rest and get refocused.
Just want to feel like myself again~

Keeping 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 - CYTOXAN WORKING!
US guided biopsy of supraclav node CAN'T FIND IT!
2/14/12 - FINISH 15 rounds WBR:)

Re: Starting WBR tomorrow...nervous & scared
 

Jessica
So glad the WBR zaps are done....now for the well deserved R & R...what better place than Hawaii.....prayers for a clean MRI when you return....we are in a race...I too have lost my hair 4x in 10 years, Halaven was the last culprit.....but the eyebrows and lashes are a welcomed perk this time!
Stay Strong!!

Re: Starting WBR tomorrow...nervous & scared
 

Jessica,

Glad you are through with the WBR. Hope you get some rest and have a great vacation with your family.

Amelia

Re: Starting WBR tomorrow...nervous & scared
 

Always scariest just before. Zap those suckers!!!
hugs and love
sarah

Re: Starting WBR tomorrow...nervous & scared
 

Hi Jessica,
Yes, well earned R&R - and add another R just for luck!

All my love,
Chris

Re: Starting WBR tomorrow...nervous & scared
 

Will be praying for a good MRI for you. I just finished my ninth WBR zap this morning and have four more to go, finishing on 2/22 for the nine spots they found in my last MRI. I've been tolerating okay, but I am extremely exhausted, and the dexamethasone is driving me bonkers. I'm starving, and my sleep is really messed up. After today's zap, the only way I can describe myself is feeling like my brain is a little scrambled. I'm a little woozy and I'm just so, so, so tired. Hopefully, though, these lesions are being zapped away for all of us who are dealing with it! :-)

Re: Starting WBR tomorrow...nervous & scared
 

Jesica,
So happy to hear from you again. Enjoy the time with your family in the coming weeks. Love you!

Re: Starting WBR tomorrow...nervous & scared
 

It's wonderful to hear from you Jessica. I'm glad you tolerated the WBR okay and thrilled that it is over for you. Have a wonderful time with your family in Hawaii. Safe travels. You continue to be in my prayers.

~Alice