I just hate this part of the whole thing....
 

telling everyone.....


but since I was taken off of the TDM1 trial I now have 6 tumors back in my liver and just found out today that I have 4 tumors in my brain. the brain tumors are new to me so that came as quite a shock. I saw my onc to day to view the MRI scans. The biggest one is 15mm.

I have been on Herceptin for about 2 months but clearly for me Herceptin does not work by itself. We added Tykerb which I have taken for the last 5 days. He is going to add Temador to that and see how that works before we consider any radiation/Cyberknife. But I think I am going to speak to someone in my area that does cyber to get his opinion. My onc wants to give this a try for at least 4-6 weeks to see hoe it does in hopes of not having to radiate.

The report mentions areas with edema and I failed to ask my onc about that and I have heard that mentioned several times on this board for those of you who have had brain mets. Just what does that mean. I know what edema is in your body, not sure if used the same in brain mets.

I pray this will work for me and hold me for a while longer since they both cross the brain barrier, but my cancer seems to be becoming more aggresive and "smarter" each time.

I know several of you have had good success with the Cyberknife. What do you all think.?

I mention this board to everyone and just how much information we gather from each other, not to mention the support.

Thank you all for always being there for me...

take care all

Re: I just hate this part of the whole thing....
 

Irene,

Sorry to hear about your progression. I can't offer any advice, but I'm sure many will chime in with suggestions.

I am sending lots of prayers and big hugs from Canada.

all the best
caya

Re: I just hate this part of the whole thing....
 

Hello Irene,
I just read your post and wanted to reach out to you. I remember when you began the trial but do not remember when or why you had to stop the TDM trial.

I am sorry to hear that you had progression and will pray that the new treatment will stamp those tumors down for the count.

Keeping you in my prayers.
Jean

Re: I just hate this part of the whole thing....
 

Jeesh. Sorry to hear the news but I know you will keep that fighting spirit. I didn't realize you were off the tdm1. There are so many trials and options, you will find one to work.

I know that edema means swelling, even with brain mets. I had good luck with the gamma knife, but only had one met in Feb 2008. I know that many have used the cyber and also the gamma knife.

Irene, while waiting for the Tykerb/Temedor to do it's trick, why not get all the research done on cyber/gamma knife? I know that is what I would do, just because I like a plan a, b & sometimes c. The old knowledge is power thing.

Sending hugs and prayers, Flori

Re: I just hate this part of the whole thing....
 

Irene, That is just awful news...the last thing you needed to hear after being pulled off the TDM1 trial. I think that is a good idea to go discuss cyber knife...seems many hear have had good results with it. At least you will have a plan & direction to go if the Tykerb doesn't do that job...but I will be pulling for you that it does! (Didn't Brenda have good luck with Tykerb on brain mets?)

I will be keeping you in my thoughts & prayers that the Tykerb & Temedor combo does the job and quickly!

Sending a big hug your way!

Chelee

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Irene
I am so sad reading your post....wondering if there is anyway you could try the Tykerb, Temodar and then somehow get back on the T-DM1 which worked so well for you....this damn cancer is so smart and tricky, we need to be one step ahead of it all the time....stay strong Irene, you have jumped so many hurdles already, you are a track star....you will overcome this setback...you are a strong woman, and you dont take no for an answer....surrounding you with love and prayers that things will turn around quickly on the new regime.

Re: I just hate this part of the whole thing....
 

Irene,

I am so sorry that you got this news. I know that you will overcome this too. It sounds like you are getting your plan in place. Please know that you are in my thoughts and prayers.

Love, Hope, Peace, Carolyn

Re: I just hate this part of the whole thing....
 

Irene, I just wanted to cry hearing your news, but instead I'm so darn mad I could spit! You've done all the right things and then had to get off TDM1 cause of low whatevers and it just makes me so mad. But you're a warrior superstar and have a great team to work with and I think they'll find just the right awful mix that will torture those rotten new tumors.
I think you're wonderful and am praying and believing for ya! ma

Re: I just hate this part of the whole thing....
 

Hello Irene. I don't have any experience or knowledge enough to suggest anything for you, but wanted you to know that I am thinking of you and hoping that between the chemo agents your oncologist is considering and the Cyberknife or Gammaknife, you will soon have a regimen that is working. Hugs and prayers.

Barb A.

Re: I just hate this part of the whole thing....
 

I am adding my prayers that you will see shrinkage down to nothing from this drug cocktail. I also think you are wise to look into gamma/cyber knife. Get rid of those &)?<?&(*)@! tumors any way you can.

Re: I just hate this part of the whole thing....
 

Irene, just wanted to send my good wishes and hugs to you and hope you stay positive :)((((hugs))))

Re: I just hate this part of the whole thing....
 

This is a really a bummer !! Keep fighting and keep putting one foot in front of the other. Try to stay positive.

Re: I just hate this part of the whole thing....
 

Irene,

We hate the part about hearing it, too...but that is why we are all here - to hold each other good news or bad. I'm thinking about you daily anyway waiting to hear...

I suggest you get aggressive on the cyberknife research - and get a recommendation from the neuro-radio-oncologist person quickly.

You're correct, many people have had good and (and long lasting) responses to the targeted radiation but it is more feasible the fewer and smaller lesions you are dealing with. Following up with temodar or another BBB crossing agent would be prudent, but I don't know if I'd want to take a "wait and see" approach. That's just my uneducated opinion - so get a real consultation with someone who knows what they're talking about.

Irene, don't lose heart.

Wrapping you in hugs and prayers, my friend
Chris

Re: I just hate this part of the whole thing....
 

Dearest Irene!

When it rains, it can pour! (((BIG HUG)))

Don't know when you last had a brain MRI or what brought about this one. Did you have any symptoms?

Your oncologist should have a RADIATION oncologist to send you to with this new situation. You need this addition to your team.

I agree with Chrisy that it might be best to go after those brain mets with a radio-therapy and put them to rest. Then you have lowered your overall tumor burden and can work on the others.

Since the largest is 15mm you are well under the max for Gamma Knife, etc. With just 4 tumors to target, this should be extremely workable.

Get tough and don't worry about any seedlings, they can be handled should they appear, which is not the case for all of us. I never had any more come back and will see FIVE years since brain mets in January. Think positive, and remember Brenda's "whack-a-mole" approach. So far, so good for her.

Re: I just hate this part of the whole thing....
 

Irene
So sorry about your news. I know you have received
good advice and I know there are lots of options.
Just to know I am thinking about you and sending
healing thoughts and prayers as you go about your
plans.
patb

Re: I just hate this part of the whole thing....
 

EDEMA question. Forgot to answer that part.

The edema is some inflammation surrounding the tumors and this is the reason they give us the the Decadron (dexamethesone), which is a steroid and will reduce that inflammation.

I was started on Decadron IMMEDIATELY - the same night as my MRI result came in. I had a few pills left from when I had to premed for Taxotere. I had some edema beginning to encroach on my left brain ventracle. (The ventracles act as in the heart and are little pumps to move the cerebral spinal fluid through the brain area.)

Please get in to see a radiation oncologist THIS WEEK, OK? Then make your decision about taking Tykerb or whatever.

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Joan and I both had IMRT ~ here's a video by my rads onc that explains about what he uses for my brain mets... http://www.youtube.com/TimDziuk

Re: I just hate this part of the whole thing....
 

You are such a fighter, I am so sorry to hear this news. I think I would also look into the cyber knife option. It seems to have helped so many here. You are and will be in my prayers...sherry

Re: I just hate this part of the whole thing....
 

Thank you all for your responses.

I have an appt. set up for Monday to have a consult with the Center in Tampa (TAMPA BAY RADIATION ONCOLOGY) that performs cyberknife/Gamma and so on.

I hope to hear some positive news about having the procedure done. I am beginning Temador tomorrow along with the Herceptin and tykerb.

Is there any reason why IF I QUALIFY to have the cyberknife done, that I can not continue with the systemic drugs that you all know of? I know that I will always have to take something systemically and just wondered. I am sure he will have an answer for me on Monday.

thanks again and I will post after I see him Monday.

I am seeing Dr. John Koval. He was a assistant clinical prof. at the University of San diego at one time.

Re: I just hate this part of the whole thing....
 

Irene - I just had IMRT targeted brain mets rads in June (to one spot) while on Herceptin/Tykerb. No problems. The only thing I do not have experience with is Temodar, but the rads onc should be well versed about Temodar, as it has been used well for ions with brain cancers...