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anyone with lung mets

carrieh
0 Recommendations

i am 34 with 4 nodules in the lung . 3 have gotten bigger from 1-2 mm the other doubled in size to 1.5 cm. this was while i was on chemo!!!! carboplatin and avastin. the dr is changing it to abraxine.. its been a week since he wanted me to have the chemo but my platelets r still low from the carboplatin!! i am nervous about tumors-nodules growing during this "break" but dr said nothing i can do but wait for platelets to go up,,,, dr is optimistic about full remission.. yet noone on here seems to have those kinds of stories.. i would REALLY APPRECIATE ANY RESPONSES TO THS AT ALL!!! THANKS SOO MUCH
CARRIE

Explore topics in this discussion:

Cancer Taxol Surgery Avastin Blisters Breast cancer Taxotere Chemotherapy Carboplatin

26 replies

jacee

Sorry to hear about your mets. I was on Abraxane and Avastin for about 9 months. I have a malignant pleural effusion with some nodules in my lung. It has also metastisized to my liver. While I was on Abraxane, it worked. Shrunk lung and liver mets. Kept the effusion stable. The only reason I went off it was because of the side effects, neuropathy in hands and feet. I'm now on Xeloda. Won't know how it's working til scans in Sept. Hang in there. My oncologist told me there are still other drugs to try. Don't give up hope. There is a big possibility that they'll shrink. I think you onc is being a little too optimistic and misleading. Even though we all hope for a full remission, it is far and few between. Regardless, it will come back at some point. If treatment can get it under control or at least stable, take that as a blessing. It is doable. Take care.
Jacee

Enola

I also have it in my lungs and am currently on taxotere and Avastin and the last scan showed they had shrunk but due to major blisters on my hands from the taxotere I may have to switch. I was first diagnosed in 1996 with mets in 2004, I was on hormonal therapy until May when I had to start chemo again due to the spots in my lungs growing. It does get discouraging. I think this is what we call trying to manage the disease and I think we will always be on something just moving from one to another.

tinad

Keep hanging on because I too was diagnosed in 2005 with mets to bones and lungs. Was on Navelbine, then finally a combination of Taxotere and Xeloda, which shrunk some lesions/nodules in lungs (bones never changed). Dr. stopped chemos for 3 mos. in 2006, felt great, but lesions/nodules returned larger in lungs, so was given Gemzar, then Abraxane, with failure, so was put back on Taxotere and Xeloda combo and have been on that since Sept. 2006. I am starting to get worn out from this "duo" but what other choice do I have, my situation is being controlled. But I do tire, get depressed, cry, and feel very fatigued first 10 days, then get Neulasta to bring up white count. It all stinks, but we have no choice right now if we want to still live. Ask you dr. about the combo of Taxotere and Xeloda. Keep me informed.
Tina

carrieh

i cant believe hoping for a remission or even NED or medically stable is so unrealistic.. i have heard of a women with stage 4 in remission for 20 yrs!!! Noone has heard of this.l dont want to live the rest of my life on chemo without any breaks!!! doesnt anyone have any stories like these?? please!

rooni

Honey there is always hope for NED!!!!! Dont let anyone get your hopes down when it comes to that. There are stories out there. I pray for my own and will not let anyone tell me different. This disease is so ugly and statistics suck but everyone responds differnt. Keep your chin up!!

carrieh

Jacee-
while i do appreciate your input i cant understand why my oncologist would have ANY reason to be "Too optimistic" or "misleading"!! What would the motivation be behind that?? He said that he would always be blunt with me and that as a dr he "OWES ME THE TRUTH " at all times.. if i cant trust him?? what should i do.. he, in my opinion has my life in his hands..

LMR

"Remission" is an interesting word. To some of us it may mean stopping the progression and keeping things stable. To others it might mean NED. To Doctors it might take on yet another nuance. While we all strive for NED and yes, it does exist and there are 20 year survivors out there, it is not the norm or easily achieved. I don't think your doctor was trying to mislead you or mis-represent the situation. I think he was trying to give you hope and keep you positive.

I had progression in my lung mets last year. I tried Xeloda for 3 months with continued progression. I went on Gemzar for 3 months with more progression and then finally Abraxane. The Abraxane has not only stopped the progression but according to my last scan has created 'near complete' resolution. And yet the Abraxane continues indefinitely because both my Oncologist and I suspect that withdrawing the chemo will bring back the nodules with a vengeance. We would all love to be in complete remission but we seem to change our expectations with every scan. Where NED was once my goal, now stable sounds pretty good!

carrieh

stable might sound good but it still means ongoing chemo... that interferes , or can interfere with quality of life. both my parents died from cancer and right from the start i let my oncologist know that i wanted him to be 'STRAIGHT WITH ME" -not give me false hope and keep me positive.. he shoots from the belt. I have 3 two mm nodules in lung and 1 that is 1.5 cm i dont think its unreasonable to expect remisssion my lymph nodes were clear and thank god its nowhere else.. why would he want to keep me positive with hope of remission ? He knows of the many disappointments i have had in my life.. He knows i dont want to get my hopes up for unrealistic outcomes,, i think if he even had A DOUBT he would of told me I HAVE TO TRUST THAT>> i dont understand why i shouldnt . again what would be his motivation for trying to keep me optimistic with hope, i told him straightforward that i need to know the whold truth before i decide to take another chemo ride again.. and he said he had NO DOUBT about this!!
why does this sound so unreal to everyone. has other oncologists said they were optimistic promising remission only not to get it.. i want to go back to my life!!! please respond to this

LMR

Carrieh,
Your sentiments aren't only yours. Every one of us would like to go back to our lives. The legacy of cancer, let alone advanced cancer, is not an easy one to live with. I'm delighted for you that your doctor feels confident he can get you into compete remission and I hope with all my heart that he is right. He obviously knows your situation better than any of us. I think the people who have responded to you were trying to say that it isn't an easy task. It does happen and we will all cheer when you write in and tell us that you are NED. We'll probably all ask for your Doctor's name!

BubbyM

Hi,
I also has lung mets from BC and have been on quite a few protocols.I also have nodules in both lungs and they were large. I am now on cisplatin and gemcitabine and my nodules are shrinking from 20- 50%. I can only take 2 weeks on, one off because blood counts get low.
I was on avastin and taxol and it was working, but then it reversed itself and grew back.
My Dr. is very positive about my combo.

SuThorn

Hi-

I don't believe that wanting or expecting remission is so unrealistic. I am 36 and was diagnosed with Stage IV last September with numerous mets to my liver. I was on Taxol and Carbo for 10 months and am currently NED! I have had two clean PET scans and will get another scan in September. My PET scan report read compete response to treatment and my Oncologist has used the word remission. She has certainly never promised it will always stay this way, but she hasn't said that it wouldn't either. Hang in there and I pray that this new treatment works well for you and you get to NED.

carrieh

thank u so much Su Thorn.. i really appreciate your response.. i want to believe my dr so much and i know the people on these posts mean well but it can be depressing.. i also choose to believe that the people out there.. the MANY people out there in remission are out LIVING THERE LIVES rather than typing on here!! wish me luck hoping my cts are ok for my second treatment tomorrow..its abraxine.. side efffects nausea and exhaustion.. i can take it all as long as i know there is a light at the end of the tunnel
xoxo

fleur325

Hey, Carrie. I am also 34, and with 4 nodules. Mine have grown once, but otherwise been stable or shrunk. I started on Xeloda and Avastin, and that showed results, and have since been on maintenance Avastin. My nodules are all a just a few millimeters.

I am ER+/PR-/HER2-

Good luck!

Bluebird

By Bluebird
Posted Aug. 19 4:14 pm
I have just been diagnosed with lung mets.I lost my husband in May 2008 he died of cancer.I was diagnosed with breast cancer and bone mets in 2004.I was in remission till this year.The cancer came back in my other breast and in my lungs.My doctor will tell me tomorrow what kind of treatments he will give me.He had put me on arimidex since Jan.2005.They have never done chemo or radition he told me there is a lot he can do for me.I pray that is true.

Thank you for all the wonderful information I read.Will keep you posted

jaynemynx

I have been diagnosed week before last christmas with numerous lung mets and mets to ribs. Remission in my onco's mind in a mets situation is reduction by 50% he says that is the best we should hope for, I was also diagnosed at the time with fluid in both lungs and partial collapse of my right lung. My right lung has fixed itself, the fluid has totally gone from my left lung only a small amount remains in my right and my lung nodules are stable, id rather a reduction but stable is ok especially with the fluid reduced. I am on xeloda and avastin, i go for my next scans monday week and we all know what the waiting is like, good luck to all of you we know so much about how we feel as only we can
jayne - sydney australia

FStage4

Carrieh, your passion and determination come through so fervently! You've definitely got the spunk you need to play the Stage IV Game. I am triple negative Stage IV and turn 41 tomorrow (yay me!). I have been Stage IV for about seven years now. I have not been off chemotherapy for a significant period of time throughout this. However, there have been some really long stretches of clinical remission. And, it's called clinical remission because after scans, I would be NED. My clinical remissions have lasted 2 years, one lasted nearly 3 years. But, always with chemo.

I'm now on Ixempra and Avastin. I am awaiting scan results I had last Wednesday. I am hope to see that my brain is NED and that the lesion in my lung, pulmonary node, and several supraclavicular nodes are regressing. But I'm not lying when I say I'll be happy to hear stable.

Do I hope to ever hope to see NED again? Absolutely! That's why we all do what we have to do to fight Stage IV.

It sounds like you have a lot of confidence your oncologist. That's great. Just be sure to challenge him and ask LOTS of questions. Don't allow for rushed exams or q&a time. If he's as good as he seems to be, he will certainly take the time for you.

He has no reason not to be honest with you and your expectations. Especially with so many women, like those on this board, who continue to beat the odds every day against this disease. We are uncharted territory. They've never seen people live so long and so well with the disease. Even after multiple drug failures. So, who's to say you can't acheive remission? Why not get to NED? It's your goal -- I say you go for it.

Be well, girlie!

T.

nureet

I too have nodules in lungs. had surgery to remove 2. now on chemo taxol, carbo, herceptin, avastin and tykerb ( very new)
I was orginally diagnosed in 1993 stage II. chemo Adriamcin and CMF for 11 months. local recurrence, surgery and chemo of taxotere and herceptin. tumor markers elevated and more chemo in 2006.
lung mets now etc.
I am hoping for a LONNNNNG remission, NED, anything positive.
had chemo today, very long day, yuk!
it is great to hear all the stories, gives me some hope.

LucyP

the mets in my lungs, not the ones in my bones, marrow, nodes, and brain, seem to have nearly vanished on hormonal treatment with Letrozol. I don't know if they've come back since I've switched to the 2nd line hormonal treatment of Faslodex, but the next PET/CT will give an indication. Hang in there, kiddo! Let your platelet count climb before you do too much more to your body. The treatments available these days are amazing!

Angelvoice

It is so good to hear your stories. I was recently diagnosed with 5 lung nodules.I was stage 1BC and was in remission for almost 3 yrs. Now the cancer is back. I did a PET scan yesterday. I'm nervous about the results. I'm triple negative...are any of you triple negative stage 4 survivors...please share your stories.

ious1Tjed6247

Dear Carrieh,
I hear your voice and...I hear in your voice a fear that is to be expected. That's why you need to come here and re-balance it all out. We are all Stage IV here and have walked the walk and can 'talk the talk'.... I am sure your dr. who knows you best is giving you the story 'straight'. You can receive platelets and I am wondering out of curiosity why he didn't order them. Maybe there is a good reason why not. But question him so you are not 'fearful'. You just sit in a chair in the infusion clinic and get them IV.
Remission to me is "stable" ----meaning there is no activity of progression of the disease.
I would also like to echo that this disease lurks (that's why we call it wresting w/the alligators) and there are so many options treatment wise, so there is 'optimism' in that we have more fuel/technology to fight the fight.
It's not an end to a means.....for me I just try to focus and stay grounded and if I feel crappy and have to ......I chill. So be it. I'm still here and I do believe that the biggest STAT crasher is God & He has a plan and I'm in it! (Thanks Beachbabe for that daily powerful affirmation!)

Our support, encouragement and love will help with your emotional sway. Remember this too. We may have all come over in different boats at one time......but we are all in the same boat now.
Together.....we are united wanting only the best for eachother. (((Hugs)))

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