Miracles happen! No residual signs of metastatic disease!

[abitjaded]

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"

[Colleens_Husband]

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

[Ruth]

YEAH!

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

Hugs ~ Ruth

[lexigirl]

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

[hutchibk]

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.

[fullofbeans]

Great, simply great I am really happy for you!

[abitjaded]

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

[ElaineM]

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.

[dhealey]

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

[Faith in Him]

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

Tonya

[Mary Jo]

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

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

MJ

[Jean]

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

Big Happy Hugs,

Jean

[karen z]

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

[Bill]

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

[Joan M]

Carla,

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

Joan

[abitjaded]

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

[harrie]

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

[lizm100]

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

[abitjaded]

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

[harrie]

Is it not time to find a different oncologist?

[pattyz]

Carla,

I was two yrs, 6 mos. out from Stage IIIb, Invasive with two tumors and Inflammatory when I was dx'd with mets.

First, mediastinal nodes, spot on lung and pelvis. Then two months later, brain mets, 1.5cm and 6mm.

Have remained NED in body since end of '02. Brain mets recurrance twice. First time: 14 in number. Second (and currently): 6-8 in number. Three of these current lesions are at 1cm in size, including one on my pons/brainstem.

These current brain mets have been responding, off and on, to Xeloda/Temodar for just short of three years. We added Tykerb last Oct. but had a bit of progression early spring anyway.

I have not been on Herceptin since tx with Navelbine worked so well back in '02.

I am er+ pr- but have refused the hormonals since bad experience with Tamoxifen early on.

so...... things might have been different if I had done something 'preventative'. But, for many it has made NO difference. To me, it is a personal choice and 'comfort level'.

My goal is quality of life, period. This is easy for me being an old fart.

Very best wishes to you,
pattyz

[Sherryg683]

It will be 2-1/2 years in July for me. I have been NED for a little over 2 of those years, I had 2 small lung mets. Feeling like my old self but have to go back for scans in July. I'm getting nervous again...Good luck to you and congrats...sherryg683

[Sherryg683]

To address the second part of your post, I was on weekly Herceptin for the first 2 years, dropping back to every 3 weeks after that. I take tons of turmeric (curcumin), grape sead, and green tea daily..sherryg683

[Sheila]

Carla
You give us hope...and I love your spunk...but your onc. sounds like they need an attitude adjustment....I say use the attitude that makes you feel good...and you have found yours!!!!!

[abitjaded]

Oh PattyZ, thank you, thank you. I figure it will be back, but I hope. You are hope.

Yes, Maryanne. Got up this morning wondering how stupid am I to put up with this. She is by far the most knowledgeable one where I get treated. Did not like her the first time and asked for a consult. The one I wanted to see delivered her first baby the day after we consulted. She said she would just be constantly deferring to her anyway, as she had much less experience with BC. So stuck with the crab for a while. Then one of the four other docs retired without notice and it was impossible to see anyone else. Just an all around lousy situation. They have not yet hired a replacement.

But Monday, come h--- or high water I'm going to change. During my appointment the other doctor I wanted tapped softly on the door and said she needed some input on another matter ASAP. She winged into her as she does to me. Figure she's got to be sympathetic and will work me in.

Carla

[Kim in CA]

Carla,

Congratulations on your clear scans! As you can see from my signature I am 3 years post brain met and still NED. I take lots of supplements, exercise regularly, eat lots of chocolate and drink wine, margaritas, and beer!

I don't know what is working for me, but I'm afraid to change anything.

One thing that I will mention is that I was originally diagnosed as ER-. When I went to UCSF to consult about my liver mets in 2002, the specialist there said that looking at my original path reports, I was actually less than 10% + for ER , but she thought it would be worth putting me on Femara anyway. I have been on Femara and Herceptin ever since.

So just something else for you to consider, cause you just never know. Kim

[NanaKaren]

Carla, Oh how can we not respond to that type of treatment from your oncologist. I am with Harrie, time to look for a new one. It is SO important to have a really good rapport with our physicians.
As far as never hearing about this web site, my oncologist will sometimes say to me,"what does your web site think". She also recommends it to other Her2 patients.
I for one would certainly love to hear that you have found a new oncologist that you trust and respect. Karen

[abitjaded]

Thanks all.

Her nurse is supposed to call me today. Time to move on.

Carla

[abitjaded]

Hey all,

I have a single brain met that refuses to clean up after two craniotomies.

I am now on my second week of lapatinib monotherapy. I seem to be a rarity in the journals and am looking for anyone who is in a similar boat.

Carla

[Rich66]

She kept my favorite chemo nurse in the room the whole time as "witness"

Did the onc actually refer to why the nurse was there? Does the nurse agree with the onc? Sure seems like the onc is forgetting why she was hired and who she works for.
Is the upcoming consult at another facility and something she hasn't recommended?

[Believe51]

Carla, I moved your post regarding your brain met question for all to see. Took it upon myself so that you could get the response you are looking for. Hope it helps. Sending prayers and love to you, today and always!! Keep the faith.>>Believe51

[Emmay]

Hi Carla,
Do read through my sister's history to see the therapies that have worked for her for varying lengths of time. She has been getting infusions of CPT-11(aka Irinotecan) plus Avastin plus Herceptin every 3 weeks since May'08, and the experimental combo has been working remarkably well, so well that she will be dropping the CPT-11 chemo to see how she does without it, since she has been stable for a good while.

I hope you are doing well, and don't need to journey through many therapies, but wanted you to know there are many options to try if you need them.

Emmay

[WomanofSteel]

Glad your scan was clear. Hope it stays that way forevermore!

[Emmay]

Carla,
If you just have one stubborn met left, and it's not too big, I'd urge you to look for Cyberknife or Gamma Knife focalized radiation therapy. It's easy, virtually painless, and the mets that my sister had cyberknifed have not recurred.
Emmay