mets to lung
hello. i got scan rusults yesterday. looks like abraxane is not working, since cancer is spreading. i am going on navelbine now. any words of encouragement? thanks. i am new to the boards, happy to find you all
barb
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Hi Barb,
I don't have lung mets, but someone who does will be along soon. I am sorry that Abraxane didn't work but we often have to move on to find something that does. Stage IV is a tough place to be but there is lots of hope and new things being tried.
Caryn0 -
Hi Barb
Welcome and sorry you have found yourself here. I have lung mets (along with liver and spine). My first chemo was FEC x3 (I had liver progression) followed by Docetaxel x3 which I finished in November. Am now on Tamoxifen and have my first scan (gulp!) on Monday with the results the following Monday.
Good luck with the Navelbine. I'm sure there will be a Navy gal along soon with some words of wisdom. It might help to post a bit about your BC i.e. ER/PR HER2 status along with any other treatment you have had.
As to etiquette, I think we're pretty chilled here. On the board I'm on in the UK, I get moderated for cussing! Jeez - here I am, an adult woman with cancer and I get told off for venting with a couple of swear words!!!
The only thing I have come across which seems to be a no-no is lower stage folk asking higher stage folk how to avoid turning into a higher stage person. It's usually done with the best of intentions but does tend to get people's backs up - understandably, I think.
Laurie x
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laurie. good luck with the scan on monday. i will be praying for great results for you. barb
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Bhd1
Hi sorry you had to find us under these circumstances. You and I have some similarities in our DX. I too have lung mets, bicep,aorta nodes, axillary nodes, and recently a small brain met. I'm currently on FEC x4. Then I move on to taxol and herceptin with radiation possible.
Every one here is very nice it will help a lot to have some place to vent. Like Laurie said there isn't to much etiquette except I think be respectful of differences of opinions. We all follow our hearts and what is right for one person may not be right for another.
Good luck on the new chemo and let's hope it kicks the crap out of the "C"
Kimber0 -
Hi Barb, Sorry that you progressed, but keep the faith. You and I have the same Dx (ER/PR - and HER2+) and I was diagnosed with lung mets about a year ago. After one false start (TDM1) we got me onto xeloda and tykerb, and things have been just peachy so far - not NED (no evidence of disease) but definately big shrinkage and no further spread so far. Hope that you and your oncologist find the right combo to kick the cancer to the curb. And don't worry, hon, I have noticed that our respect and concern for one another makes the etiquette a non-issue - the love is there, and that makes it easy - SUE
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Nsvelbine was developed for lung mets, a good choice. My lung mets are very fickle, but seem to respond to treatment , I hope yours do too!!
Best of luck!0 -
No advice on lung mets or navelbine but wanted to welcome you.
Your etiquette was a little off.... Kidding!
I hope you respond beautifully to Navelbine and send those little buggers running.
Hugs!
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Sorry you had to join us. No lung mets but I am on Navelbine. Side effects are nil so far except for my immune system. But every chemo I have been on has done that so I don't hold it against it!
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I am also ER/PR- and HER2+ with lung mets. I just finished navelbine (it stopped working) a couple of weeks ago. It worked well for about 5-6 months. Now I am onto something new. Even though the navelbine didn't get me to NED, it did keep the cancer contained to the lungs. I'm sorry you have to join us here is stage IV land. If I can answer any questions about navelbine or lung mets, I'd love to help. I also had surgery on my lung to get tumors for chemosensitivity testing so I could make a somewhat educated treatment choice.
Deena0 -
Hi Barb, I'm another lung mets sister. However, I'm ER/PR+, Her2-. I was on navelbine only for 4 treatments, 3 weeks on, 1 week off, and then I only got one more treatment, because I had developed a subdural hematoma. Nobody knows why. As I got my first navelbine they gave me aloxi as a pre-med anti-nausea. I had a terrible head ache for 2 days after that. The next week I got zofran, and everything was fine. However, just a day before my scheduled 2nd treatment of the 2nd cycle the head ache was back, my onc cancelled the chemo, and sent me to have a brain MRI done right away, where they discovered the subdural hematoma. I had brain surgery on Dec 5th. My onc did not put me back on the navelbine, because I still show progression, but no brain mets. Yesterday I started a new chemo, Alimta. Hope this one will work. It is actually a lung cancer drug, but back in May last year we had sent a tissue sample to Caris Life Science in TX. Amongst a bunch of other recommendations they think that Alimta might be beneficial.
I hope the Navelbine will work for you for a very long time. For the short time I was on this drug, I did not notice any SEs (other then the head aches, which I don't attribute to Navelbine anyway).
sending you lots of hugs,
Helmie0 -
thank you all for the responses. i am feeling good on day 2 of navelbine. fitztwins, i did not know it was developed for lung mets. thanks for sharing. barb
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Hi Barb, no lung mets here but I did want to welcome you to the biggest supportive family in the world!
Hope the Navelbine works well for you and puts those cancer cells out of business!
Love n hugs. Chrissy
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I have lung mets and have learned so much just from reading these posts! Barb, thanks for starting this threat. I didn't know navelbine was developed for lung mets either! Yeah! Something else in the arsenal for the future! I'm NED now and taking gemzar as a maintenance chemo but it is so good to know there are other options. I hadn't heard about alimta either. Welcome, Barb! When I first found bc.org I was in awe of the friendships that were forged. I did a lot of lurking, then a post here and there, and it seemed like in no time I was part of a very large, supportive family. Hugs your way! Glenna
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I've had lung mets since the get-go and I've been on navelbine weekly since April of this year :> cyber hugs to you....navelbine can be nice to us and nasty to mets!!!!!
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Hi and welcome to the boards! I have not had either of those drugs but I am a lung metster.I am glad you found us, lots of great people and much needed support and advice here. I hope the new tx works for you!
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Bhd1, I don't have any advice or experience with lung mets or Navelbine but I want to welcome you to our little corner of the world.
I hope your treatment is successful and gives you minimum SEs.
Leah
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Hi Bhd1 -- I have lung mets too, as well as skin and nodal involvement. Welcome to these boards, but sorry you had to join us. You'll find this site a great source of support -- don't know what I would do without it!! Good luck on Navelbine. I'm keeping my fingers crossed that it kicks the beast to the curb!
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Sorry about your joining us, but glad you found this forum! I have lung mets, am ER+/PR+, and am on Femara (an aromatase inhibitor) that appears to be helping. If you are postmenopausal and ER+, an aromatase Inhibitor (AI) might be of help.
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Another lung mets sister here. Doing Halaven which seems to be working at least I'm stable. Sorry you're here, but glad you found us!
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Lung metser here too! I'm on Taxol and it's doing the trick! Good luck with the Halaven and welcome to the boards.
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My bride has lung mets. Currently she is on Taxotere but I am going to be asking about halaven and navalbine today when we go in for her appointment. She has had fluid in her lungs and a terrible time breathing the last few weeks.I'm hoping one of the others will be a bit kinder to her.
Hope you have good success on the navalbine.
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My first mets was to my lungs in 2008. I had a new lung biopsy sent to Caris and found the cancer had changed from Her2- to Her2+. My first treatment was with the usual carboplatin, taxol, and herceptin protocol (6 treatments). The carboplatin really seemed to clean up my lungs well. In 2010 I had mets to my liver. I had Sirspheres for this, which 2 years later, in combination with various chemos, has kept the liver tumor to half the size it originally was.
I'm on Navelbine now with herceptin. It really knocks my platelets and white blood cells down. I give myself neupogen shots for the first 10 days after treatment. I've had to be hospitalized several times for neutropenia. But I think that was before they finally decided I needed the neupogen. I think for me it is just the problem that I've been on so many chemotherapies that my bone marrow has just about had it. Navelbine is suppose to be given in small doses once a week (according to my onc). But since my platelet levels drop so low, he has to give me Navelbine once every two weeks. so, according to him, I am getting only half the dose. But on the first 3 months of being on Navelbine, my scan showed improvement. I'm due for another scan first part of Feb.
Other than my blood counts I've noticed constipation the first week after treatment. I also am really prone to nausea and vomiting. I told them I would need Emend as a pre treatment nausea drug. They told me the emetic profile of Navelbine was not high. I told them that in the past the only thing that has worked for me is Emend. It is expensive so they talked me into trying the first treatment without the Emend. A few days later I ended up in the hospital for 9 days throwing up my guts and loosing blood from intestinal bleeding. Now they always give me Emend and IV Kytril prior to treatment, and a kytril patch to wear on my skin the first 7 days after treatment. Do you think my insurance company would have preferred to pay for a dose of Emend or a 9 day hospitalization? lol Of course fatigue is always a problem for days 3-10 especially after the steroids they give you before treatment wear off.
Hope this helps. Since you are getting Navelbine first, you will likely glide through with very few problems. Prayers and hugs, Sherrie.
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Welcome to the board! We have no etiquette here, we love running amonk!!!! Just kidding, please post when ever you have a concern, just want to vent, rant because we are here for you always. I did Abraxane for just under 8 months and had progression so was changed to Gemzar which got me stable. I have no hx of lung mets only liver/bone. I did Taxol too but was severely allergic to it. Good luck with your tmts and hope it kicks your cancer mets to kingdom come. Hugs Dawn
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Hello Barb,
Welcome to our unfortunate club of lung mets, I have mets to both lungs and after neo-adjuvant chemo x5 taxotere x1 FEC prior to surgery the mets have shrunk to tiny and stable which is really good news, I don't have any symptoms at all but everytime I get a cough I always think the worst but its turned out to be just a cough!! I did ask about cyber knife but was told I have to many for that treatment which is a shame cause I think its very effective for lung mets. I had a mx with lymph clearance back in September and am now doing radiotherapy as well as tamoxifen/herceptin combo which seems to be keeping all at bay.
Hope that the navelbine works for you I'm sure it will, we are all different some works some don't it's just a case of trying until you find what works for you, keep us posted anytime you want a chat please feel free to pm (private message) me.
Sending you love and light
sarahsweety xxx
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This is my first time posting here. on January 21 of this year they found lung mets quite by accident when doing a CT of my liver (liver enzymes were elevated - probably from Femara, but Dr was just checking...I know, for CA) got a couple of pictures of the lower lobes of my lungs. Then they did a full CT of my lungs and found 'too numerous to count breast cancer metastases throughout all lobes of the lungs, with condensation bilaterally at base of lobes and up outer sides. I almost fainted. The oncologist said they are the size of a pin head. She just switched me from Femara to Tamoxifen. 6 weeks later my blood tumour count was down from 80 to 56 and the CT of lungs unchanged. No more testing until beginning of June. Oncologist says I am doing well.
I asked in the beginning why not just hit me with chemo again and she said to wait and see if the Tamoxifen did the trick. I just wanted it bombed out of my body. Now I'm waiting and wondering what is going on. I have never had any breathing issues and my O2 saturation is 98%. Oncologist said I will be dealing with this for the rest of my life and might very well need chemo in the future and the body can only take so much. I found my first rounds of chemo not so bad.
I'm getting more scared with so long to wait to find out how I'm doing.
How do all of you cope with this 'waiting'. I try to be positive but do sink info deep funks. My original BC was discovered March 2010, and my last surgery Oct 2011, so just before finding out about the lung mets, I felt like I was getting back to being me again. And now I'm me with lung mets!
Any suggestions from you wise women?
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justagirl, This is a year old thread that you have posted on. I suggested creating a new thread and copying your post into it to get the answers you are looking for.
I am sorry that you have joined us here but you have found a wonderful group of ladies full of information and support. The first couple of months are the hardest while you are trying to wrap your mind around your new life. Once you are settled into your treatment and increase your knowledge it will be easier to deal with.
When I started Tamoxifen my onc said it could take up to three months to start working and didn't consider scanning before that. During those three months my markers went from th high 60s to the 20s. A year later Tamoxifen is still working for me. I would say with your tumor markers going down you have reason to think positively!
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Justagirl I have found staying in the present is the best way to live with mbc. Don't look back and not too far ahead. One day at a time.
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I think I was on AI's for 2 and 1/2 years before starting on chemo. It's so much easier than chemo and if you can get a couple of years out of it before starting chemo, better for your body. I had several opinions and was told the same thing by everyone. I was able to work and lead a pretty normal life until I started the chemos. I've gone through quite a few of them as well. Better to start with the least invasive and "harmful" treatments and save the chemos for when the AI's become ineffective! Sorry you've had to join us here. Hugs, Glenna
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I saw that this thread wasn't very active but it was the only one that dealt with being just diagnosed with lung mets.
bhd1: yes, I think for me it's to not look back at what I was or could do, but what I can do now and tomorrow.
SonnyB: thanks for the reassurance that my tumor marker going down is a good sign. I thought it was % -wise.
Glenna: I get you. The tamoxifen now for as long as it works. Hopefully I will have many more years ahead of me, and if the tumours increase or enlarge or start giving me problems, then my body will be way past the last chemo so maybe it won't be all so bad.
No, this is one group I didn't really want to join, but I sure am glad I found all of you! I already feel better. Many thanks
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Hi justagirl,
Sorry I'm a bit late jumping in on this thread I'm english and don't come on here that often. I understand your panic over the lung mets I was dx with both a large primary IDC 6.5cm and 2 weeks later mutiple mets to both lungs back in March 2011 to say it was a shock was an understatement it sent me into a year long research bender which has ended up with me taking a concoction of supplements and drinking a pint of organic green veg/wheatgrass juice daily, so far so good, I've had lots of CT scans since and have been taking tamoxifen and having herceptin for the past 2 years the mets on my lungs haven't changed they have stayed the same since a CT scan in June 2011 like yours mine are also tiny and due to the no change one onc I saw told me "it could just be scar tissue on your lungs and not cancer" because they are so tiny they can't biopsy them so I live in a freaky kind of limbo land "is it or isn't it" that is the question that I have banging perpetually around in my head, I say perpetually but actually thats not strictly true as time has gone by and I remain stable and symptom free the big C constant worry is sort of somewhere around the back of my head not on my mind all the time or in my face, I get a bit nervous when I have to go in for scan results but I don't allow myself to worry until I'm in that waiting room.
The only advice I can give you is to look after yourself eat healthy and try to include some gentle exercise, look into complementary treatments to help you feel better about yourself its hard to trust your body when you've lost confidence in it, live for the moment is my moto I try not to plan to far ahead and take each day as it comes, definately try and enjoy and have some laughter in your life. It certainly isn't an easy ride but its one that gets easier with each passing day.
If you want too know what supplements I take or what my diet is I write a blog http://livingwithsbc.blogspot.co.uk/ (as a way of trying to make sense of the mountains of info on the subject) as far as supplements/diet/exercise go I think this is a personal decision and of course you don't have to change anything at all if you don't want to but for me personally by changing things it gave me a feeling of being in control of my body and life again. Take care if you want to ask anything else or just have a chat please private message me.
Sending you all love and lightxxxx
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