update and question

[Joy]

Hi all, I got test results today and all in all it is okay. It sounds like things are stable (yes, I know that is good). No new liver mets, possible slight increase in a liver tumor, but the doc said that the CT prodedure was lacking a phase that would have given a better picture. Bone scan may show a little bone progression, but bone scans aren't terribly conclusive. She also mentioned a small lung spot which my sister said (she keeps the reports to keep me from reading them all the time) that sometimes that spot is there and sometimes it is not. Really my lungs haven't changed in 7 years so who knows really what is going on. Nodes in the chest are good.

We are going to do a PET/CT in 6 weeks. In the meantime I have asked that markers are not drawn as I just can't ride the marker rollercoaster anymore. She was cool with that and I told her if she really wanted them to draw them and I will just have to resist requesting the results. I guess it is my new year resolution.

So for now I stay on the navelbine, which is so easy for me. I mentioned avastin and gave her the study from San Antonio of that with herceptin. And we also discussed some radiologic options for the liver mets.

Which leads me to my question. Thanks to "fullofbeans" I got a lot of information from a site she recommended. I'll have to look up the link again, but it really helped me a lot. One procedure that I'd not heard of that seems to have some really great results is called Laser Interstitial Thermotherapy (LITT). I'm not sure, based on, my research if it is being done much in the US or not. Does anyone know?

Thank you again for all of your support. I'm trying to look at this as positive. I just don't think it is possible to become NED after you move into the heavily pre-treated category, huh?

p.s. WAY TO GO CHRISTINE!!!

[chrisy]

Hi Joy,


Glad to hear your good news. Take it as such! I haven't heard of the LITT but will be interested to hear more as I had liver mets and you just never know when those little buggers will pop up - so I want to be ready just in case.

What you also never know: "I just don't think it is possible to become NED after you move into the heavily pre-treated category, huh?" It could happen, I will keep holding this thought for you.

Hugs
Chris

[karen raines hunt]

Dear Joy,

So happy to hear things are stable.

Karen

[rinaina]

Way to go Joy. Keep bringing us good news!

[Shell]

Joy-

Stable is good, although, like you, it took me a while to accept that.... Keep us posted if you start the herceptin/avasting with the navelbine - that's what I'm on now, and I'll have scans probably towards the end of february...

Kind regards,

[Andi]

Joy - I'm glad to hear things are stable. I, too, would be interested in hearing if you add avastin to your navelbine, herceptin regimine, since I am currently on navelbine and herceptin. Keep your wonderful positive attitude!

[tousled1]

Joy,

Great news! Stable is better than progression. I agree with you about the tumor markers -- too many things can affect the results. When I was diagnosed with Stage III my tumor marker was 15.3 - well within the normal limit. Have you considered the Bayer Serum HER2 test? That's the only one I do now and I have it done every 3 months.

[juanita]

So glad to hear your good news. I hope things contuinue in your favor.

[Adriana Mangus]

Hi Joy: Stable is good, very good. I'm on xeloda due to tumor growing again -rt lung- and was on navelbine about three years ago. I'll take stable over progression any time! for as long as possible, maybe twenty years :)

[MJo]

Dear Joy - I am glad your bones are stable. As you suggested in your other post, I am giving a cheer for arthritis. My CT scan found something on my right lung that the doc called "pulmonary pimple." They are going to watch it to see if it grows. I trust not. A woman in my support group with bone mets said her CT scan found a cyst on her kidney. It's not doing anything, so doc isn't worried. I never had a CT scan before. It found all kinds of little quirks in my body -- a tiny gallstone, a pulmonary pimple. How can I possibly worry about them all!! Not likely. Hugs and blessings. MJO

[fullofbeans]

Great news!!! I am delighted for you

Pressure is off and you can take time to think.

Love
Karina

[kimber]

Joy - Great news! Stable is very very good news. Of course I along with everyone else is praying for NED!

p.s. I was heart sick for your sister. She sounds like a wonderful foster mom. I in time may decide to do the same thing. Just think she gets to love those pups and send them into the world to their forever homes. How cool is that.

Now, you need to clear your mind and enjoy the weekend! love - kim

[kk1]

Hi Joy;

in regard to tthe LITT question, I had an e-mail dialogue with the Dr. Mack in Germany last year and no it is not currently done in the united states but he said the RFA was an equivalent procedure and gave similar results. He sent me the names of people in the US he reccommended for RFA in the US.

Monday I am going for a liver resection which after much research and several second opionions seem to be the way to go when it is an option. After 3 different consults each of them said that RFA,cyberknife, LITT, or other abaltive techniques are only done if the tumor is not resectable. I am scared to to death about the surgery but figure it is my best hope for a really long remission now that they have reappeared again.

kk1

[Jean]

Joy,

So happy for you! Wishing you continued good reports.

Jean

[lindaw]

Dear Joy

i also think that stable is good.Anything that buys time for something else to become available is good - especially if the quality of life is good whilst on it.It is good news.

love
Lindaw

[Vanessa]

Great news!!

[Lolly]

Dear Joy, that is good news! I hope you continue to remain stable, and yes, it's an "attitude adjustment" for sure, but one which brings much peace of mind. I'm hoping for stable myself, of course NED is something I'd love to see but stable would be just fine. I recently read a comment somewhere, can't remember where (ha!) but the comment was that it's now possible to remain in a stable disease state for many years, even with a cancer diagnosis, and have excellent QOL, as the rest of the body remains basically healthy. That seems to be what quite a few of us HER2 gals are experiencing, and in fact I got a big laugh from my onc once by saying "so I'm really pretty healthy except for this darn cancer"!. Keep up the good work, and BTW, I also have a lung "nodule" which comes and goes on scans, nothing changes except that sometimes "it" shows up and sometimes not. My onc is not worried, so I'm assuming it's possibly a bit of inflammation around a cyst, and cysts are pretty common, so try not to worry!

<3 Lolly

[Joy]

Your post made me feel a lot better!!!