Mets to lungs - Page 3

TheresaM · 07-14-2007, 10:51 PM

ummm, i was shocked at someone's post that lung mets seem easy to get rid of? huh? i think some of us cancer patients live in different worlds than others! like those that say breast cancer is a"chronic disease" - chronic for a small handful of very unique and lucky stage IVs. of course for all who never have to deal with mets, life is an entirely diferent world anyway.

I wanted to say Kate that a respected oncologist/researcher i know who specializes in bc mets told me xeloda seems to be a good chemo for lungs. indeed tykerb/xeloda was the only thing that ever worked for me, but I'm extremely recalcitrant and it only worked for 7 weeks. but i know others who've gotten at least a year out of the combo. personally i found it very easy to tolerate, and i'd had many many chemo combos before that.

just another suggestion for you, you have many many options, hang in there, one day at a time!

Theresa

Kavy · 07-15-2007, 02:08 AM

Kate,
I am deeply sorry for your news. I can imagine what you are feeling right now, because I have been there. Just hang in there, and try not to think too much of what is happenig to you right now, I know itt is hard, but try to keep busy doing whatever you like most, it helps a lot.
I was also diagnosed with Stage IIIC, and in less than a year I became Stage IV with lung and liver mets. And I felt what you are feeling right now, but I can assure you that things do get better. In fact, today I had a big party to celebrate my son's 6th birthday, everything organized by me,a nd I did not even remembered for one single moment I have Stage IV breast cancer.
I am er/pr-, hers2+, and I have been on nalvabine/herceptin for a year now, and my small liver mets are all gone, and all my small lung mets (both lungs) are almost gone, 1 just have a less than 1 cm met that they could hardly see on this scan, and a stable lymph node. So herceptin/nalvabine has been very good for me. And Nalvabine is a very easy drug, no premedications, no hair loss, no nausea, just a little bit the day of treatment, and some neuropathy. It is very doable.
I hope and pray that you find the right treatment for you very fast. When you do, things will go back to "almost" normal again. If you have any questions, PM me, I would like to help you through these terrifying moments. Hang in there.
Hugs, and prayers,
KarlaV.

doh2pa · 07-15-2007, 07:16 AM

Hi Kate,

I'm am so sorry that you get to be a member of the stage IV club, but I know you know that lots of women on this sight live full lives with this, as I like to think of it, chronic disease state. Anyway, I've been stage IV for almost two years, with liver mets first and lung mets added to the mix in May. My quality of life has been very good. I work, travel and have fun with my family and friends. I hug my kids a lot (and they're teenage boys and hate that!) and love and appreciate my husband every day. I will not let this disease take my living from me!

On the battle front, after only 6 weeks on Xeloda/Tykerb my lung mets are GONE and my small liver mets are GONE and my larger liver mets are all much smaller. There is hope out there! Please keep us posted on what you and your onc decide.

You will be in my thoughts and prayers.
Donna

michka · 07-15-2007, 08:28 AM

Hi Kate, I saw your post yesterday and wanted to write but couldn't I was so mad. Why does this happen to such a nice person who has been supporting everybody on this forum?!!??! Your onc. seems to do right so see what he recommends. Fight all the way up the hill once more! I know it is easier to say than to do, but please give us news. You will be in my mind and heart every single day.
Michka.

Shell · 07-15-2007, 10:51 AM

Kate-

I am so sorry to hear of your progression. My mets was first to lungs, and my onc chose xeloda, and I chose the clinial trial if xeloda with tykerb, and that kicked things back quite a bit for some time.

But everyone is differerent, and the navalbine and taxanes are also an option. Like Lolly mentioned, I would definitely keep the herceptin...

Please keep us posted, and you are in our thoughts and prayers...

Kind regards,

Ceesun · 07-15-2007, 11:21 AM

Kate, Hello sorry to hear of this development. I was diagnosed with 1 lung met, probably a 2nd one,too,though we did not know for sure. that was about 13 months ago from a ct scan. I was on herceptin, late edition, 20 months done with chemo. Anyway, I am now in a clinical trial with herceptin and navelbine and xeloda and am in remission. Hang in there, friend, I do understand your disappointment. Ceesun

Adriana Mangus · 07-15-2007, 12:24 PM

Marcia:

Why did you get retested? I just got the results in May 2007. I'm BRCA1,2 Neg. Why the need to get retested again..???Thanks for your response..P.S. I do not want to believe there could be a mistake with this test?

Adriana Mangus · 07-15-2007, 12:33 PM

Dear Kate:

Ever since my recurrence in 2003 -mets to rt lung - everything seems under control with the above combo..I had a ct chest scan back in Feb.07 which showed the tumor was growing back,- less than 1cm- and went back to the same combination. Amazingly is working all over again...

No side effects for me, this drug is called vasicante? though, which can cause to some people extreme burns on the skin for it tends to go outside the vein, hence the burns on the skin. Maybe a port will do it.??

Ask your onc. I heard this is an effective combo for most patients with similar dx as yours and mine. With just two treatments the marker went down from 67.4 to 36...

Sending you positive vibes and a BIG BEAR HUG. Please keep us posted.

Sherryg683 · 07-15-2007, 01:18 PM

Hi Kate, I emailed you personally but just to reply here in case others need the info. I was on Taxotere, Xeloda and Herceptin for 4 months for two small lung mets. I have been NED for 15 months now. I remain on Herceptin weekly and will do so indefinately. You are in my prayers and if you need anything else, please email me..sherryg

anne2 · 07-15-2007, 03:38 PM

Hi Kate,
I just read your post. I am sorry to hear about your progression. I remember meeting you last year and thought you were wonderful. I am sending courage and prayers for good health. I am sure you will find a combo to get you to NED again.
Hugs,
Anne

chrisy · 07-15-2007, 05:13 PM

Oh Kate, My first reaction was WTF. I hate this!

But, I'm so impressed by your take no prisoners attitude. You are amazing! Your diligence will pay off and you will knock this back, I know it.

Kim in CT responded well with lung mets on Nabelbine/Herceptin..

MJo · 07-15-2007, 05:13 PM

Want to add my best wishes and hope that you will be NED within a few months. This disease s--ks. God bless and EnJOY!!!

Val Pfeiffer · 07-15-2007, 07:23 PM

Kate--
I agree--ask for the Herceptin this week (along with whatever other chemo drugs they will be combining it with--for example, I had Carboplatin and Taxol with my Herceptin). I was one of those people who never had a port--I'm still glad I didn't.

I think that since your sreum test showed your levels to be up that there isn't much question about your lung mets being Her2+ -- and we all know that the sooner that we can get the Herceptin in there, the sooner we can get rid of those mets :-)

Good luck!!!!!!!!

Val

Bev · 07-15-2007, 08:27 PM

So sorry Kate. These things always nake me angry too. I'm keeping the faith you'll find something that works. Keep us posted, Bev

caya · 07-16-2007, 06:04 AM

So sorry to hear about this Kate. But you are a fighter, and will kick this to the curb. Keep us posted.

All the best,
Caya

Believe51 · 07-16-2007, 09:32 AM

I am so sorry again to hear that you have joined the stage IV club, it is a place that I never wanted to see you. I know you will continue to fight like the 'Warrior' you are!! Since I joined the board originally in March of 2007, you have given us all the kind words we needed, the prayers we had to have and insight for the journey ahead. You supplied the inspiration and fearlessness determination we yearned for to go forward with our own fights!!

As you enter down a different path on your journey, I must let you know you shall not walk alone. My husband and I will be aside you in mind...always. Please always beckon on us when you need to vent, cry, scream, or laugh. It would be our pleasure to be able to give back to the gracious Angel that you are to us!! We could never come close to helping you the way you have helped us through, but we are willing to give it a shot!!

I wish I could go down to see you because I would hold you and let you know we shall be here indebited to you for a lifetime. I would hug you and whisper that you will always be secure in our hearts. We cannot treat your illness, but we can surely treat your heart and soul. Until we talk again I send those giant hugs anyway, laced with prayers and positive thoughts for your return to NED!! Hopefully Lovey, we can meet you there!!! Lets Race>>>BRING IT!!!

We Love You A Lifetime and then some!!

I still do and always will still BELIEVE!!!!!!!!

Waiting For A Miracle...and expecting one soon (..and for you too!!!) >>Believe51

PS: I KNOW WE TALKED BUT I WANTED TO KEEP THIS POST ALIVE SO YOU COULD GET MORE FEEDBACK!!!!

saleboat · 07-16-2007, 10:09 AM

Kate,

I'm just so sorry. This disease can be so cruel. I'm wishing you strength and courage in this next leg of your journey. And also a quick resolution to the question 'what do I do next?'

My best,
Jen

Heart Sutra · 07-16-2007, 05:17 PM

Kate,
I just got home from work and Sue told me about your post. That sucks. Of course we're thinking about you and know that if information is of any help in all of this (and it certainly is) than you are one of the best equipped.
What can be said? You were of such great help to us when we first came here, and you continue to be.
We' re thinking of you.
-Kevin

tousled1 · 07-17-2007, 06:13 PM

I want to thank everyone for their wonderful support at this time. You have provided me with a good bit of information that I can use in my discussion with my oncologist on Friday. That is when we will come up with a treatment plan. Thank you again and I will keep you posted.

jones7676 · 07-17-2007, 09:13 PM

I was diagnosed with lung mets in Dec. 05. I was retreated with chemo and there was a small amount of residual activity until Dec. 06 when my bc became very active again. Currently being treated with Xeloda and Tykerb and it seems to be working wonders on my lung as well as my bone mets (per pet/bone scan after 4 treatments). Hang in there! I hope whatever they come up with knocks them out.