Miracles happen! No residual signs of metastatic disease!
 

Dear all,

Got good news Friday, PET of brain is clean. MRI of body shows nothing else!

Anyone else clear after initial mastec, axiallary pos, two years out and one WBRT treated brain met?

What treatment? Any preventative treatment if you are clean after a met?

Carla

Dx July 2006 right breast Age 52
Found by self, always cystic, did not resolve after two rip roaring heavy peri-menopausal periods, 4-06, 5-06 after no periods for 4 mos
Invasive ductal grade III, high grade 3.2 cm ultrasound bx, pos lymph
PR- ER- Her2Neu+ grade 3, IHC3+, FISH 4.3
Mastectomy Aug 2006,
Axillary node dissection 3 of 9 lymph pos, invasive to fatty tissue
Radiation mastectomy site+ 30tx, 9-06 38 Gy?
4 cycles AC 3 wks apart start 9-11-06
4 cycles Paclitaxel 3 wks apart finish 2-11-07
Herceptin start during tax, 52 weekly doses total 12-4-06 start finish 11-27-07
MUGAs normal, but not one single CAT or MRI at any time during dx or tx
Hemmorohoidectomy, ER 4-07, no relief, anal fissure surgery 5-07
Mammo 7-2007 on left suspicious, 6 films over two weeks
Stereo bx, finally cleared weeks later, micro Ca
One yr follow-up 4-2008, missed due to ER visit, ha!
4-9-08 found wandering halls at work
Lots of weird stuff a month or so, blamed gabapentin for periph neuropathy, and stress started a month or so before brain symptoms
ER 4-9-08, admitted ICU
One week ICU massive steroids
Tumor on surface of right parietal, frontal lobe, 1cm? tumor, 4x5x6 cyst
Her2Neu+, IHC>3, FISH 10 yikes
Neurosurgeon got tumor 4-14-08! Little scraping, slight left ataxia left only!
Started WBRT on 4-28-08, 10tx of 3Gy for total of 30
PET 5-19 clean!, MRI 5-28 clean!, Neurosurg follow-up 5-28
Then wait and see, meet with Oncologist 5-30 to “See if I responded to radiation"

Carla:

Congratulations on the all-clear. I'm not sure about medical prevention, there are a lot of real smart women on this site who will help you with that, but I sure will say prayers for you to keep you clear of cancer.

Lee

YEAH!

Congratulations...I don't have experience with this but it is wonderful news to share!

Hugs ~ Ruth

Such terrific news!! Thank you for sharing. I am so happy that you are doing well. Prayers for continued good health!

Hugs and Prayers,
Lexi

yeah Carla - good going girl. Watch the research on whether Tykerb helps protect the brain from future brain mets... I think Dr. Eric Winer @ Dana Farber in Boston is testing that.

Great, simply great I am really happy for you!

Hey Bren Hutch,

I've been reading everything. Cannot wait to see when the phase II (49 women) of the Tykerb-Xeloda is finally made official at ASCO this weekend.

Are they Stage IIIing? At Dana Farber? Maybe they will finally FDA approve Tykerb for Her2 brain mets? Do you have a link?

I wish I could find a study to just do Tykerb and Herceptin.

But gotta fail too much for that to happen.

How are you????

Carla

Miracles happen !!
 

Hi,
A very big congratulations to you !! Job well done !!
Maybe your doc can refer you to someone who can help you with preventive treatment. In the meantime take very good care of yourself. You also deserve a little celebration.

Great news Carla. Go out and celebrate. Buy something really outrageous!

That's is wonderful news. Thanking God for your miracle.

Tonya

How wonderful for you. You must be giddy with joy!!!

Sending up prayers of thanks.................

MJ

Carla,
Congratultions - loved hearing your wonderful news.
Yes, Miracles do happen and I am glad one has happened for you.

Big Happy Hugs,

Jean

Carla,
What wonderful news! I am so happy for you.
karen z

Oh, Glory be to God, Carla! Our prayers have been answered once again.

Carla,

Congratulations on your diagnosis. Whatevery you're doing, keep on doing it!

Joan

Thank you all for celebrating for me. Saw the Neurosurgeon today. Showed me the MRI. He is thinking some cyberknife to really kill the evidence. Here goes. But after all this, seems like just the thing to REALLY stop worrying.

I'm going to the garden store and buying my plants. (I'm a hard core gardener , but my garden is a mess from the last few years.) Normally I have that all done by now. But now I can dig! I can rake! I can drive! Yahoo! And decrease the stupid steroids!!!!

Carla

RIGHT ON CARLA!!! Fantastic news!!!
Your gardening sounds like the perfect plan....cultivate, plant, and grow your nice beautiful garden....enjoy...

Carla-

congratulations...wonderful news...love to hear it..puts a smile on my face just before the weekend too ;+)

Yes, plant that garden, we just started ours last week. Eating from your garden is the healthiest way to go.

Take care,
Liz

Rant, rant, rant
 

Thank you all.

Going for a consult Monday at University Hospital in Denver to get a second opinion about Cyberknifing the area, too, mentioned by the Neurosugeon who took out the tumor. Hopefully NOT.

Saw my Oncologist today. Reamed me out for not just taking the good news and just enjoying my boys "in this time period while I'll be in the best shape (before I crash)". Dislikes that I research the disease so much. Says it is my way of denying that I have a bad cancer. Says I'm depressed. Yo, get that. No hair, dilantin reaction that can be fatal. All care described as palliative. Depressed? Who, me? Days in and out of ICU. Bald as Bozo again. Sweating in wigs and compression sleeves. I should be happy as a pig in slop, right????

Tried to explain to her my research is what I have done all my life as a biologist. Researched melanoma, researched bean fungus, researched calcium in spit, researched catecholamine receptors, researched pee in gallon jugs (record 12 gal from one patient that had to be combined to test one teaspoon ((5 ml to you science types)), researched my Doctor best friend's genetic link to abnormal clotting, even researched my husband's clone for a gene he studies in frogs. It is WHAT I DO. Figure I'm entitled to research my own disease.

Told her my research made it quite clear even to stupid me that there was no point in doing any chemo, etc. right now. To save the arsenal when (not if, I get it) I crash again.

Basically said I was a pain in the butt and took too much of everyone's time and energy. Yeesh, she makes me crazy. My husband was livid afterwards. We ranted all the way home. He said he could not believe the things she said. Couldn't understand why I did not ream her back. She kept my favorite chemo nurse in the room the whole time as "witness". Made my cry once again as I assured her of all the things I AM doing with DH and kids.

Gee, just need a little PEACE.

Gonna make a Strawberry rhubarb pie for a friend who fed us all through the WBRT.

Then wait for shade to plant some more this evening. Purple Wave petunias, lime green Marguerite vines, and a new experiment, Croton, in Colorado no less. Forget the pink.

Thanks for listening. Please don't respond. I just needed to vent.

(By the way, she talked about all their other Her2 patients and how she knew all about trials, drugs etc., but never heard of this site.)

Carla

Is it not time to find a different oncologist?