Oops - sounds like progression...
 

Well, my onc has always said "... if it's my nurse's voice when you answer the phone you know it's good news, and if it's my voice, then you know we have something serious to talk about..."

So that is how today started. It was his voice. Yikes.

First, my CA15.3 went up a little in the last month. It continues to be a very reliable indicator for me.

And, 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 have already talked about doing LINAC STRS on the individual spots.

I will have a PET/CT next week to look extra-cranially (just trying to talk like a doctor...) at the rest of my body. I know, that's redundant, but it makes me feel smarter.

If there is no body involvement, I will treat with radiation and stay on Tykerb/Xeloda for the time being. If there is any body progression, we will add Herceptin to my Tykerb/Xeloda.

Hey ho - here we go...

Brenda,

Gosh, I am so sorry to hear about that. You are my hero girl. You took a chance on Tykerb/Xeloda and what a great long run you had with it! I know you will handle this setback (and it is only that, you know) with the same fighting spirit you always have. Keep us posted!

Donna

Real sorry to hear about this, but I am sure you will tackle it head on. LOL Will say an extra prayer for you.

What are LINAC STRS? I am proud of you for taking the news in stride while formulating a plan. I'm impressed by your calm posting but glad to feel a calm energy from you. Sending extra hugs today!
Flori

Hutchi girl` Time to get the boxing gloves tightened? I am sorry theres been a change...but judging by your posts I know you will knock these beasties to their kneees yet again!!!

Big hugs,
marcia

Yeah,
What are LINAC STRS?

You definitely sound like a doctor, or maybe an uber-researcher or properllerhead. It's frustrating, I know, when the "results" of these tests are not clear.

But I am very impressed - you have your next attack plan ready to go already! Good for you. Saddle up, girl.

Sorry to hear there may be problems....you've been my hero on the T/X combo. I hope whatever happens it means successful treatment and more NED for you.

Oops - sounds like progression
 

I am sorry to hear it. However, you are strong and I know you and your docs will figure out what to do to get rid of whatever may be causing a problem.

What about also discussing or researching Temodar? it is another oral chemo that passes the blood - brain barrier and is used for brain cancer?

Just thinking out loud here. I'm thinking about you Brenda and I know this will get resolved pronto.

LINAC is a linear accelerator (Cyberknife, which is just a brand name). It basically accomplishes the same thing as a Gamma, however my head will be snapped into place on the table with a custom formed face/head mask instead of with a halo and screws. My Rads onc doesn't do Gamma, but he does send patients to a Gamma doc here in town if the tumors indicate it is necessary. He makes the determination based on the MRI and does not have any problem sending patients where they need to go. Not a competitive or ego driven guy. He is truly Patch Adams. He is a dear wise and old soul who is deeply worried and concerned for every patient in his care. He deems that FSTRT is what my case calls for... (STRS stands for Sterotactic Radiosurgery) FSTRT is Fractionated Sterotactic Radiotherapy. Here's some info to help define it for everyone...
The linear accelerator based radiosurgery machines are prevalent throughout the world. One benefit of this technology is its ability to easily treat large tumor volumes (over 3.5 cm) by treating over several sessions. When treating over time, it is called fractionated stereotactic radiotherapy and not stereotactic radiosurgery (which is a one-session treatment). The machines are made by multiple manufacturers with common brand names: Novalis Tx®, CyberKnife®, and others. The Novalis Tx® is the most common machine available. Linear accelerator based machines are not dedicated to treatments only within the brain. They can be used throughout the body, as well as the head and neck.

This is one of the most informative links I have ever found about all the different radiation beam techniques for brain tumors:http://www.irsa.org/radiosurgery.html

Ja Becky - we have talked about Temodar in the past and I am planning to talk about it again next week...

I will let you all know as we proceed. The good news is that we follow me so closely that these changes are still very early and I have absolutely no physical indications from them. We are really on top of this and that is why I LOVE my doc so much. He truly is my hero. And so are all of you!!

Brenda,

I wanted to let you know that I am thinking about you and wish you well. Please keep us posted once you speak with your Radiologist Oncologist. It sounds like your plan is solid and I hope it does the trick quickly.

...and you do sound like a doctor, by the way... so smart and so informed. I guess that we have to be.

Carolyn

It is good to hear that you have such a good and trusted team in place. And have the radiation onc up your sleeve for a consult on Monday. Keep us posted. And keep the faith.

Brenda - from what I was told at the time - and I was NOT in a very receptive state of mind - more like a panic freak zone - anyhow - I was told that gamma was able to focus radiation in a tighter area without damaging surrounding tissue - brain cells. The halo was screwed on to insure positioning would not change a millimeter. They told me that they could treat more than one spot if needed. I saw Dr Ray Chu in Keith Black's office - you remember my 14 year old brain surgeon-

Here's the link:
http://www.cedars-sinai.edu/9633.html

..."The Gamma Knife is accurate to the sub-millimeter level and is one of the most technically precise radiation instruments available. The shape and dose of the radiation is optimized to hit only the target, without damaging surrounding healthy tissue. Furthermore, treatment is performed in one session and patients can usually return home shortly after treatment."

A multidisciplinary team of Cedars-Sinai specialists, including neurosurgeons, radiation oncologists, medical oncologists and physicists collaborate to optimize the patient's treatment. Each case is reviewed by the Gamma Knife Review Board to ensure an optimal treatment plan.

Man, with an attitude like yours that cancer better get it's walking papers and move on out - AND FAST. http://her2support.org/vbulletin/images/icons/icon7.gif Love that positive attitude girlfriend. Know that we are all in your corner and prayer and love are surrounding you in a major way.

Love & Peace,

Mary Jo

Sorry to hear the news, hucklebuck. Thanks for keeping us posted on what's happening with you. I know you guys will do your best and knock out those mets. You have a great onc. and that is a major plus. You keep on rollin', girl.

Brenda,

Just wanted to offer my thoughts and good wishes as well. I too am always impressed by you and hope that your step away from NED turns out to be very short.

Eric

Sending love your way for a quick return to NED.

Tonya

Brenda,

I'm sending good vibes your way that the treatment will reverse the tide. I firmly agree that catching the problem earlier is better.

Joan

Brenda,

Just want to add my support and let you know I'm keeping you in my thoughts and prayers.

Brenda,

You are another amazing warrior we are so fortunate to have on this board. So glad this was caught early and you are already working out a plan.

Brenda, no one encourages us more and calls us to task more than YOU! You have a great doc, but he has a great patient! Wishing you a speedy healing. ma

Brenda I am so sorry to hear of this development for you, but I know being the warrior you are you will kick those mets to the curb.all the bestcaya

Brenda,

Adding my support, too. You are in my prayers.

Karen

Brenda,
Lets just get those buggers outta there when they are still small and wipe them out!!
We are all behind you all the way!~
Sending you all my postive thoughts and prayers....
Maryanne

Oh Brenda !

I am thinking about you and hope all the nasties are cleared away soon.

You have that amazing brain of yours well trained to look in the right places for results.

xo
Maria

Brenda
I would say those spots don't stand a chance, knowing you.....give 'em the what for! Sending thoughts and prayers that this will be taken care of pronto and you'll be the 1/2 beer Brenda that we all know and love SOON!!!!!!

Wow Brenda
 

I'm sorry to hear of this latest development. What I admire about you is that you don't react with doom and gloom, but you react with a very logical approach. I'm sure most people reading your posts will agree with me. What a good example of courage. Be well.

Brenda,
Many of us have had 'set-back' news, and most of us did not handle it with your grace. Your information, and how you handle each situation sets a standard for the rest of us. I jokingly said to my primary nurse, that I would put my house up for sale in order to pay for Tykerb. My onc. called later that evening and said "please do not sell your house, so that you can pay for Tykerb south of the border". I assured him that I was only kidding around with his nurse. Anyway, I re-directed my energies in having fun, fund raising and running around in circles trying to get goverment officials respond in a positive way to approve Tykerb. I have run the circle twice, being the 'bucket' in pass the bucket. We now have a Federal election in October and I will be the 'big wheel' and try going around in circles again.
Best wishes to you in your journey,
Hugs,
Diana.

Brenda, I am hoping this little setback will be taken care of asap. Ceesun

Brenda, Just wanted to let you know I am thinking of you. You seem so positive and strong. I know you will stay on top of this. Take Care. Sally

Brenda
My thoughts are with you and I know you and your
Dr. will choose the right treatment for you. I admire
your spunk. Remember we can't control the wind, but
we can adjust our sail, as we all know. Best of luck and
healing thoughts
patb

Brenda,
I just want to say that among ALL the reasons I admire you and you are my hero, being able to say "OOPS' regarding news of progression has to be way up there! I usually have used stronger words...but I think I like your approach. After all, since this little bump in the road doesn't stand a chance against THE HUTCHIBK, all it deserves is an "oops"

Knock 'em dead, hutchi.

Thanks all - I don't have enough reserves to get down or worry about it... being a mets patient, we just know that at some point we will probably have to move to the next back-burner plan. The saving grace is to have identified a back-burner plan ahead of time and to stay well monitored so that there are no big surprises... this is small and manageable and not unexpected. Not preferred either. LOL. I have a nice list started of back-up plans on deck if we need to adjust, and thanks to all here who are paving that way for us all!

Pat- you know I love that saying, and that is my credo. We can't control the winds but we can adjust our sails - that pretty much should be the credo for all mets patients.

Will let you all know more as I know more.

Hi,

So glad you posted while I was thinking about you. I think your doctor was choosing LINAC over Gamma Knife because the mets are quite small in size after they had shrunk.

Because it involves with our brain, doctors always take a 'wait and see' approach. My 'residue' brain tumors never worried the neurosurgeon until they suddenly started to double their sizes. They were about 2 cm each in diameter, and the GammaKnife RS has been effective in keeping them in check. (still there about the same size, just not growing anymore)

I can't add anything to the information these amazing women have given you. So I will send all the very best and hopes for quick response to treatment.

YEAH!!! So we looked at all of the scans today going back 9 months, and these spots are nothing new. They are the same spots that we have known about all along. The Tykerb and Xeloda knocked them completely back for the last 18 months, but now they are waking up a little, so we will whack-a-mole them with STRT (same thing as Cyberknife). The really good news seems to be that since we see absolutely nothing new, it seems that the Tykerb/Xeloda is continuing to protect my brain from any new interlopers. Looks like it is just a matter of whacking these things back. I will start my rads on Weds - and will go for a 20 minute appt for 5 days straight and that is it. The spots range in size from three spots that range in size from 4mm-10mm to two very lightly enhanced 1.5mm spots that he wants to just go ahead an take care of since I will already be on the table. I can't wait to get started!

Got a PET/CT today, too, so hope to have negative results from that in a day or two.

YES Brenda!! Kinda reminds me of whacking those weeds out of the garden. I am so happy for your news.
Will keep those positive thoughts going your way for the PET/CT results.
Maryanne

PS...did you do ok through the hurricane?