8 weeks, 8 new spots in Brain = 15 rounds WBR

[jml]

Just got home from my follow up Brain MRI and meeting with Rad Onc.
My last Brain MRI was on 11/18/11 - at that time we
were discussing a 2mm spot close to the area in my L lobe where there was a 4 mm spot that was successfully treated with Novalis'd in 6/10.
At that time, we decided to watch & wait the re-scan in 8 weeks.
That brings us to today.
Today we find 8 new spots - a 2cm spot in my brain stem, a 2cm spot in my R temporal lobe, and other very tiny spots.
Now we're talking about 15 rounds of WBR.
I have the planning session on Friday.
Incidentally, I may have to stop the metronomic Cytoxan/Methotrexate for the 3 weeks of WBR.
The Rad Onc suggests that I not wait to start the WBR, but in the mean time, in the absense of systemic chemo, what happens to the disease in my body?
It's too much.I'm exhausted from crying and not even sure why I should go ahead with this treatment, other than I'm too afraid to stop.

Trying to 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.
Suggested tx – WBR x 15 rounds

[StephN]

Oh my, dear Jessica -

You have done so well in keeping your brain trouble free all these years!

You know I feel for you and understand all the emotions. It puts a lot of doubt into a person once our brains are attacked, but there is much that can be done.
It is not in your nature to give in - but you are allowed some time to process what is next. We all need that when facing more mets.

Too much going on to hit the spots, so I understand why WBR. Will they treat the 2 larger places singly afterwards? Or not that far down the road yet.

Best thoughts for the brave person we all know and love to take this like the champ you are. {{{{HUGS}}}}

[Paty]

Jessica,

I am so sorry to hear what you are going through. I do not know what to say but, I will be praying for you. I send you a hug my dear and hope we can soon have different news.

[JennyB]

Jessica,

I hope you get some improvement soon I will be praying for you.

Jenny xx

[ElaineM]

I am so sorry. Hugs !!!!!!!
I think would ask my oncologist if I could at least continue the Herceptin even if needed to take a break from the other drugs during the radiation if I were in your situation. Perhaps the radiation oncologist and the medical oncologist could work together to figure out something together to help you cover the rest of your body during the radiation.
Take good care of yourself, keep putting one foot in front of the other and try to stay positive.
I have my fingers crossed for your success.

[sassy]

Jessica,

I wish I could reach through here and hug you hard. I'm so sorry you are having to deal with this---but I know you will deal! One step at a time like you have always done. Cry, Rant and Rave and then step up for battle.

Got you in my heart.

[chrisy]

Jessica, certainly not the news you were hoping for - I know you must be feeling discouraged and scared. And as you say, trying to keep the faith. You are a strong woman.

I agree, if you can stay on herceptin (or maybe herceptin/tykerb?) that may offer some protection vs a total chemo break.

In the meantime, know that we are keeping faith FOR you and that you are wrapped in loving prayers.

Chris

[alicem]

Jessica,

Agree with all that is written above. As usual, wise advice from wonderful ladies. I'm sending you . . .

{{{{{HUGS}}}}}

from Deep in the HEART of Texas.

~Alice

[mmoons]

Jessica-

You are so strong and so brave! Getting that news is crushing. It is too much. I am sure you are exhausted. But please keep your eye on the prize....NED again. You will get there, Jessica. You will. This desease is no match for your stamina and your will and your courage.

Like everyone else here, if I could send a hug through these words I would...I am. Please feel all the loving, healing, supporting thoughts and prayers coming your way.

Maureen

[hutchibk]

Jessica, it's hard for me to add anything that these ladies haven't already suggested! I do like Chrisy's idea of Tykerb/Herceptin, which I think by your signature you haven't tried yet... maybe ask the rads onc and the med onc how slow they are all growing... and if you are to scan monthly while on it, maybe it would make the punctates (smallest of spots) go away as the Tykerb/Xeloda did me. (I got 18 months from Ty/Xel and another 20 months from Ty/Herc. It's different for everyone, I know, but it's a great thought.)

It sent my punctates away completely and allowed me to do the 'whack a mole' method of targeted radiation to the remaining 6 small lesions.

Just food for thought. Blessings, prayers and love for you as you decide how to move forward.

[Rich66]

Radiation (enhances CSC?, needs Akt inhibition,w/endocrine,w/honokiol,w/curcumin,w/Zol,w/loratadine,w/glycolysis inhib,w/various chemo, w/cox2 inhib)
http://her2support.org/vbulletin/showthread.php?p=222127#post222127?fmetronomic


Brain mets (treatments, diagnostic issues, prevention, mechanisms, blood brain barrier BBB, delivery, intranasal)

http://her2support.org/vbulletin/showthread.php?t=42084

[KsGal]

((hugs)) Im so sorry that this has happened. I will certainly keep you in my prayers, and send you lots of positive energy.

[jml]

Thank you everyone for your support, hugs, love and suggestions.

It was a long 5 hour visit with the doc yesterday, between getting the mri and seeing his resident then seeing him. They didn't even have a dictated report to share with me, as we went directly to the computer to read the films, so I don't have any exact measurements.
I believe the most urgent information here is that only 8 weeks ago the only thing on my brain scan was a 2mm spot in my L lobe that didn't look exactly like disease, because it appered to be more linear than spherical.That was the reason for the watch & wait x 8 weeks.
These results are a horrifiying shock...when he said "8," I sqeezed my eyes shut so tight.
The most problemeatic thing is how quickly these things have grown, most especially a ~2cm lesion in the center of my brain stem. The brain stem - that controls everything - from motor function, to breathing and heart beating.
And a 2cm lesion in my R tempora lob (above the ear).
While I'm completely asymptomatic, they do see some swelling already and am to start decadron very soon.
Incidentally, they can't do any kind of radio-surgery -novalis, etc- in the brain stem, as it creates too much necrosis, and as we've all scene recently with Brenda, that is a very dangerous situation.

I'm sending an email to my Onc. right now. The RadOnc said he would talk/email her last night, so by now she knows. I do want to talk to her about adding Tykerb back in. Back in 2009, the Tykerb didn't do much to control the disease in my body, but maybe it'll help my brain now?
Thankfully my sister is here from San Fran. She was planning on being here this weekend anyway, so the timing couldn't be more perfect.
I'm scared. All I can imagine is that i'll be putting my brain in a "microwave" for 15 days, and what will I be left with? How sick will I feel during/after? What little hair has started to grow back will certainly be lost again.
And whatever time we do buy for me is for what? To continue to live in fear and sometimes pain from this disease?
I keep saying "I just want it to be over," but truly, I'm not sure what I mean by that.
This is so hard.

Jml

[Delaney]

Jessica,
So sorry to hear your bad news. The worst things I found about the WBR was the hair loss and the fatigue, but i got through it and you will too. Its great your sister is there with you. I really hope the treatment does great things for you.

[Emelie B]

Hi Jessica,
I too, am so sorry for about your news. I know that punch in the gut when they tell you what it is this time. I totally agree with Steph, Brenda and Delany. Those are great sugesstions and we all know you can do this.
Sending prayers to you and your sister for stength and peace in the coming days.
Emelie

[chrisy]

Dear Jessica,

"I keep saying "I just want it to be over," but truly, I'm not sure what I mean by that.
This is so hard."

That does resonate - you've been in this marathon for SO LONG, longer than most and probably longer than even you imagined. I think you don't need to know what you mean by that, especially in the heat of this moment. That feeling is just your reality right now - and you don't know what tomorrow will bring. I saw such a zest for life in you when we met in San Antonio - and I sense this is the "real" Jessica.

For now try to surrender that doubt and fear, and fatigue. Know that there are many who are there to love and support you - including your outstanding medical team.

with hugs and much much love,
Chris

[karen z]

Jessica,
Chris's last post says everything I want to say to you but much more eloquently than I can say right now. I don't know how long your sister will be in Atlanta but I am so glad she is with you. Remember that I am nearby so I hope you will let me help in any way I can as you go through treatment. I will be in touch.
Love,
Karen

[Patb]

KEEP THE FAITH ...My prayers are with you. You have
been through so much and as I read your post, I know
you will keep trying and my thoughts are with you everyday as you go through now even more.
patb

[adelay]

Please know that prayers are heading your way...trust in the Lord, he will help you through this.

[bejuce]

Oh Jessica! What more can I say after all these words? You and CourtneyL going through WBR... Two amazing young women with beautiful lives being struck by this breast cancer monster. I don't know what to add to the above. I'm praying and thinking of you and hoping that you'll have the strength to pull this through and come out of this experience with hope.

I'm also angry that this disease chooses to attack us like this. I believe in the research that is being done but I'm mad that things don't move as fast as we'd like. Sometimes I wanna quit my job and go back to school to study biology and try to do some research myself. I feel so powerless.

I can't imagine how hard this must be for you. Hope that at least by being in this group and hearing our words you get some comfort, peace, and courage to keep fighting. We all believe in you.

Love,

Marcia

[chemteach]

Wow....I'm so sorry for such difficult news. You will develop a plan, and you will fight on, and you will do what is right for you. You have wonderful doctors and these women, all of whom, me included, send thoughts and prayers and energy your way. We all reach out to you. I like your photo with the dog. Think about those times and the times just like that ahead of you. Onward!

[Pray]

Gods blessings to you Jessica! I am also sadden by your awful news! I can't emagine what you must be going through! Every word these women have written so far (I'm sure there will be more!) I feel the need to say every one of them to you. I'm so glad your sister will be with you soon, Isn't family that our strength originates from? Please know that you are in my prayers. Your courage has always held me captive waiting to hear a post or thread from you. Even now with this hard news I can feel the strength in your words. You are Amazing.

[KsGal]

I wish I had words to comfort you, but I know that there are not any words that can make this better. I pray that you continue to show no symptoms, and I pray that these treatments do what they are supposed to do quickly and without pain. Im so sorry for what you are going through, and have been through for so many years. You are such a strong woman, but it is okay to let yourself be weak sometimes. You've carried such a burden for such a long time..((hugs))