Topic: mets to lung

Jan 6, 2012 01:10PM alesta29 wrote:

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 

Jan 6, 2012 04:03PM usafmom wrote:

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"

Kimber

Jan 6, 2012 05:41PM Fitztwins wrote:

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!

Jan 6, 2012 06:42PM chele wrote:

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!

Jan 6, 2012 10:18PM Helmie wrote:

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,
Helmie 

Jan 6, 2012 10:27PM chrissyb wrote:

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

Jan 7, 2012 12:13AM chainsawz wrote:

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!!!!!

Jan 7, 2012 03:05PM Leah_S wrote:

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

Jan 7, 2012 10:45PM Bestbird wrote:

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.

Jan 8, 2012 12:48PM Cathy2 wrote:

Lung metser here too! I'm on Taxol and it's doing the trick! Good luck with the Halaven and welcome to the boards.

Jan 11, 2012 12:27AM simba wrote:

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.

Jan 11, 2012 12:43PM sarahlou1967 wrote:

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 

Apr 18, 2013 09:42PM SonnyB wrote:

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!

Apr 19, 2013 01:50AM GatorGal wrote:

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

Apr 23, 2013 04:58PM - edited Jul 30, 2013 01:54PM by sarahlou1967

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 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