Calling Patty Z

[hutchibk]

HI Patty - I am hoping to pick your brain a little more about Temodar and your treatment combination chronology with Xeloda, Temodar and Tykerb, and what you are currently doing.

It seems I am having new activity and slight increase in my brain lesions... after 18 wonderful months on Tykerb/Xeloda. My doc and I have spoken a little by phone, and we will go over possible pharma approach changes next week. I will see my Rads onc on Monday for the radiation plan... (see below from my "Oops, progression" post yesterday).

>>>"My MRI yesterday seemed to show slight increase in 3 of the known spots, and maybe one very small new one. This time it appears to be real, but with the confusing, un-trustworthy and mistake-ridden/poorly written report 2 months ago by the scan radiologist, I will know the REAL story on Monday when I see my Radiation Oncologist and go over the scans with him. We are talking about doing LINEAR ACCELERATOR (LINAC i.e. Cyberknife) Fractionated Stereotactic Radiotherapy on the individual spots. (5 fractions on each one)..."

Let me know what your thoughts are, as you are my brain mets mentor!

[StephN]

Hi Brenda -
Progression is ALWAYS a bummer. Sorry!

Can you take some Gamma Knife or other radiosurgery for those persistent brain lesions?? I know you were looking at the "whack-a-mole" route before and seems you did not do tha"

P.S. Hope you stay high and dry when IKE comes your way.

[hutchibk]

I think we are supposed to get some much needed rain, thank goodness, but it will come with some 50 mph winds. I plan to keep the blinds closed on Saturday, make some pasta, hunker down, (pray that the electricity stays on and we don't get tornados) and finally DO MY TAXES!

[pattyz]

Hey Brenda,

Ok...

Spring 2005 I had a progression showing 8-10 new brain mets, but no symptoms and all were fairly small.

Mri's every 2 months, watching/waiting.

Number of lesions lowered from the 10 down to eight, as others seen earlier were remnants from earlier rads tx's.

Aug. 2005 - 'we' decided to start my Xeloda/Temodar based on the increase in size and the info I brought to my onc re: the combo of Xeloda/Temodar specific to bcbmets.

The very next day, I became dizzy 24/7! Good timing... And that dizziness seemed to lessen after only a weeks time on tx. And in fact it did. Dissapeared totally after first round.

MRi at 2 months (two rounds) showed: 50% shrinkage to most lesions.

MRi at 4 mos. (four rounds) showed: (again!) near 50% shrinkage.

My dosage/schedule of Xeloda/Temodar was 'designed' for me by my onc. To start:

Xeloda @2000mg tot. per day x 14 days.
Temodar @250mg per day x 7 days. (the first wk of Xeloda)

Repeat in two weeks. Giving me the Temodar just one week out of four. ('premed' of Zofran for barfing/nausea just for the Temodar).

Over the course of these past 3 yrs. we have tweeked the dosage and schedule a number of times. Sometimes dropping the Temodar for a few months. Dosage of Xeloda down to just 1000mg tot. a day.

However, I did have progressions and stable periods. So, perhaps the 20/20 visions says I should have stayed the original course...

It now appears that I have just 6 brain mets... but no reader actually specifies, damn it. Some say 6-8 and leave it at that.

With my last progression and 3/4 of the lesions being just over 1cm, including the pons/brainstem, we started a 'new' schedule.

Xeloda back @2000mg tot. day x 7 on/7 off.
Temodar back @250mg tot. day x 7 on/21 days off.

We added the Tykerb last fall... but I still had this latest progression. Yet, I take it, full dose, every night on top of the X/T.

Mri after first 'new' schedule showed: Stable, no change, no new. No edema nor mass effect. I'm ok with that, but sure would like a bit of shrinkage along with it!

Next Mri is Thurs. the 18th. See onc for results the following week. I can let you know what the report says then if you want...

The 16 brain mets I had treated with Linear accelerator/SRS w/headframe (10 lesions) and CyberKnife, no headframe YEA!(6 lesions), totally resolved and have not returned these last four years.

I'll be sure to watch for your updates... I use YOU as an example of yet another way to tx brain mets successfully!

wishing for the best outcome, and good people to see you through,
hugs,
patty

p.s.
I need to use a timer when I'm on my chemos. AS: 30mins b4 taking the Temodar I take Zofran. Then, the Temodar on empty stomach. 60mins later, eat fruit cup as: Xeloda WITH food.... oh boy.....

[LAURIE]

Brenda, you cougar I know you can fight this. I think about you all the time, and the time we spent at LIVESTRONG. So sorry to hear about the progression. Rock this out!!!

Much love

Laurie

[hutchibk]

Yo Patty - you rock. I will print and take it to my doc. I am excited about the STRT - can't wait to kill these little suckers.

So - nausea (and vomiting) seems to be a foregone conclusion with Temodar. Do you also lose your hair?

[hutchibk]

Thanks Laurie!! I think about you and Marie all the time too. We had a great time with you and your folks!

[pattyz]

:)

Brenda,

I've been 'able' to do this, in part, because I've remained NED in the bod since the Navelbine/Herceptin worked so well the last few months of '02.

And no, no hair loss from the Temodar. The one time I forgot the Zofran, I was indeed up in the night barfing.... My dose was 8mg of the Z. But, I've been able to use 4mg with the same success for most of these three yrs. Would the barfing still happen??? I don't know and don't want to take the chance!!

The only noticable S/E has been pechecia (sp?) on legs late in the week on the Tem. But, my counts always rebound just fine and quickly.

I don't 'know' anyone else taking it, so have no other comparisons.

You know, maybe what I had in the way of rads with the CK was 'fractionated'. I had the 6 mets tx'd with two sessions, two days apart. The CK Center had just opened, so they were short on 'experienced' help... but no one used the term "fractionated" at any time. huh. Leaves me wondering now!


Anyway.... It sounds like you have a great team. In all ways. I believe you'll do and be just fine with your decisions and tx's.

hugs to you xoxoxo
patty

p.s. I'm pasting one of Emmay's posts simply for more info:

Full history on Emmay's sister's brain mets tx's
Marie,

My sister has had WBR and then multiple CyberKnife treatments (a brand of Gamma Knife, I believe) at Beth Israel Deaconess Medical Center in Boston. The CyberKnife was very effective, then a new 2-3 tiny mets would show up in new location after 2-3 months. Lesson: definitely follow-up MRI should be scheduled every 2-3 months, until there is a consistently long period when no new mets show up -- then perhaps a longer stretch between MRIs.

When she maxxed out on CyberKnife, she shifted to Tykerb+Xeloda. That didn't work for her, so she was started on Temodar+Sorafenib. That worked well for about 9 months, but she lost too much weight from medication side effects. She is now on CPT-11 (a.k.a Irinotecan)+Avastin (along with Herceptin) -- that combo has been very effective for a number of months now, and her doctors are monitoring closely with MRIs.

Emmay - My sister's history:
6/03 Diagnosed Her2+,ER-PR-Breast Cancer, IIb
7/03 Lumpectomy
9/03 Begin chemo: AC+T
2/04 Mastectomy for local recurrence
3/04 Begin Herceptin
5/04 Radiation to mastectomy site
9/04 Recurring Headaches – brain mets diagnosed
10/04 Craniotomy #1 - remove 3 brain mets
11/04 Whole Brain Radiation
2/05 Begin Lapatinib(aka Tykerb) Clinical Trial
5/05 Craniotomy #2 - remove largest brain mets
7/05 Stereotactic Radiation to 2-3 sm brain mets
10/05 - 3/07 CyberKnife Radiation Treatments for small brain mets as they arose.
5/07 Begin Temodar+Sorafenib for brain mets
2/08 Begin Tykerb(Lapatinib)+Xeloda for br. mets
5/08 Biopsy shows new disease and necrosis
5/08 Begin CPT-11(Irinotecan)+Avastin for br.mets
6/08 MRI shows dramatic improvement

[jones7676]

Brenda,

Please don't misunderstand the notes to you following my best wishes that they find just the right treatment for you. I have watched your postings as closely as I can.

I will be watching what you go through and the treatments you opt for very closely. They just informed me yesterday that the brain met that they zapped twice with stereotactic is continuing to grow. Monday I meet with the brain surgeon and will have to begin making decisions. Because I live in Upper Michigan and there is only one medical center, my options up here are quite limited and I will need to travel for treatment (I believe).

Your posting info/answers will be helpful to me as well, so I hope you don't mind me following the answers you get closely.

Stay positive!

Barb

[Mary Anne in TX]

Brenda and Barb, I am pulling for you! You guys are remarkable, capable, and determined, I know! Just want you to know that you also have my prayers and cheers. ma

[hutchibk]

Thanks for all of the info Patty Z - again you rock my world. From what we know (PET/CT on Monday for good measure) - I am still NED in the bod, except for the one very small bone met on the iliac wing. But with Zometa added in back in May - it has remained totally stable as confirmed by MRI 6 weeks ago... and the torso CT 2 months ago showed nothing else. I know that it is so much easier to put the plan together if the activity is either in the torso or the brain, but more complicated if it is in both...

Barb- we're in this together my friend, so we will share info with each other as we go along. Best wishes! We can do this, just keep on keeping on!

MA - thanks for your thoughts. How did you do last night in Rockport? Or did you evac?

[christie]

Dear Brenda,

I am sorry about your progresion, but i am praying that God will show you the right direction and also that he will bless your doc with the right wisdom to give you the right treatment.

You have always been an excellent encouragement for me and i always read all your posting. in fact i wanted to ask you and clear some of my doubts but i know you have enough on your head. so maybe i will ask you later.

I am really praying for you, I know that you will be fine very soon. God bless you

love
christie

[hutchibk]

Christie - thanks! Please ask any questions that you have... if I can answer them I will!

[Mary Anne in TX]

Brenda!
We left and took my mother in law and our granddaughter! We have a 5th wheel in San Antonio. Really helps when I go for treatment and don't want to push to race back home!
The first level (laundry room got wet, but nothing major we don't think) We're really lucky! They'll go home tomorrow and I'll stay one more day and chill a bit! Avoiding storms is tiring!Thanks. Will you be in San Antonio for BC symposium in Dec.?
ma

[Soccermom2006]

Just checking up on Brenda & MArAnne post Ike...good to see you both posting...

Marcia

[hutchibk]

hey Marcia - I'm good. We were supposed to get the west side of Ike as a tropical storm and we got NOTHING! We got some 15-20 mph gusts of wind until about 2 pm, but no rain. And I REALLY needed some rain. Well, my yard did...

MA - I am soooooo glad you got out and are in good shape. My in-laws are in Port Lavaca and they came up to New Braunfels... I don't think PL got much of anything either, but Houston and Galveston sure are a mess.

I will see you at SABCS!

[Soccermom2006]

Dont want to "Hijack" your thread Brenda, but am wondering what happens to all the patients in hospitals in Houstons gigunda medical district during a storm like this,any idea?
Stay safe you got some dragons to slay,lady!
PS I am supposed to be at SABC too, hope to hook up with you both!

Hugs,Marcia

[Esther]

Brenda, just saw your post. Sorry you are facing a new issue to deal with. I also had fractionated rads to my brain stem in April of 07. They said they do that when the location of the lesion is in a delicate area.

It totally zapped that lesion and it has never come back, though i had the treatment done in 5 treatments done every other day and the drive to Cedars-Sinai was a killer.

But hey it worked....Keep us posted on how you do.

[hutchibk]

Thanks Esther! I think the rads will do just fine. I am not too worried about them. I love my rads onc, even though he hasn't had to treat me yet... but I have met with him a few times this last 18 months and he is cool.

Just want to collect all of the info I can about novel pharma plans in case I need a new one.