Mets to Lung and Bones, Agh!

kalyla

Hello Ladies,  I'm so sad to have to post in the mets forum. I was hoping this day would never arrive, but alas, with 22 positive nodes I knew deep down that it was just a matter of time before I'd have a reoccurance. I just imagined that it would be a very managable bone mets and not this nasty, horrible mets to lungs too. It's hard to breath and I cough often.

On Christmas Eve, I had a trifecta of proceedures; the surgeon drained 47 oz's of fluid from outside the right lung, (yuck, that was horrible because they only gave me a local anesthetic and when the drain tube was inserted it felt like there was an alien inside of me), they'll boipsy the fliud, biopsies of 2 sites under the left, mastectomy side, and installed another medi-port.

I'll see the oncologist on Monday to go over the boipsy results and tell me about which chemo I'll be getting, etc. etc. What questions should I ask? What I really want to know is how long do I have to live? I've heard the prognosis for lung mets is bleak and I don't want to die gasping for air. I'm already doing that now and its not fun! The plural drain was hopefully going to restore my breathing to normal, but it hasn't; it's helped somewhat, but not alot. I am afraid the chemo will be super strong and completely wipe me out and I'll be sick to my stomach, unable to work or drive, etc. All these fears are driving me crazy. 

Please someone help!  Does anyone have experience with lung mets who can guide me throught the next few months? Thanks.

hollyann

Kalyla, I don't have experience with lung mets, but there are a few ladies here who do..........Just wanted to send you a message of strength and courage..........And a hug too.........Good luck to you, sweet sister......

kalyla

Thanks hollyann, I'm going to need all the help I can get. My oncologist appt was rescheduled till tomorrow because they did not get the biopsy lab results back yet. All I want it to breath easier, but I'm not sure if, when and how that will happen.

chainsawz

I have lung mets, but don't have any symptoms right now.  I know it is a scary time, but you can fight this!   You are far away from dying, so try to put that out of your mind (easier said than done, I know!).  The fluid is probably what is causing you the discomfort and shortness of breath. I hope your biopsy results are benign, but if they aren't please know that there are many of us here to support you on the stage IV forum.  If you post lung mets questions - those with that condition will help to answer any questions.  Best to you!! 

kalyla

I had my first chemo today, Taxotere. The doc said 1x per week for 3 weeks, then 1 week off, then 3 weeks on, etc. He'll add Avastin in a month or so after the port insision heals. Supposedly, if Taxotere works the way they hope, I'll be able to feel some relief from my coughing and shortness of breath issues by next week. I'll keep my fingers crossed, also, keeping my legs crossed is also a good idea, because all this coughing is leading to some embarrassing pee spray moments while I'm in the middle of a coughing jag, yuck. I've taken to wearing a panty liner to catch it, double yuck.

palaminoridesagain

Kayla:  Well I'm sorry you have to be here.  Being pretty new stage 4 myself I can clearly remember how I felt when first diagnosed.  I have mets to my left femur and the pleura of my right lung.  It keeps filling up with fluid and needs to be drained.  Sounds like the procedure you just had.  Also had a new port put in about 3 weeks ago.

It all happens so quickly and the stress involved with it all is overwhelming.  My biggest issue was shortness of breath.  I have had my lung drained twice but at least I was given IV Dilauded during the procedure.  Anyways all my doctors told me one I started IV chemo I would see improvement as the chemo works.  I have had 4 rounds of abraxane and caroplatin - the side effects of the chemo don't see bad at all because I have a much better quality of life.  The shortness of breath and coughing is getting better.  My PCP also gave me a couple of inhalers that have worked wonders with the coughing and wheezing.  Wonder if an inhaler would work with you.

I have read that taxotere with avastin works great.  I just finished my 4th chemo today.  Yep on New Years Eve - making my own statement about this whole thing,.  It is strange being back in the chemo room, but I am at a new cancer center and at least the rooms are private.  Anyways hang in their my friend, keep working with the doctors to help you with the shortness of breath and coughing.  At first I was so scared because everything I checked on the internet.  Once I stopped and realized what I was doing to myself I stopped.  Somehow I regained my sanity and I am pretty postive now, but I sure know what you are going through.  Good luck to you my friend.

nnn 

Judiiiii

Kalyla, Just wanted to let you know that shortness of breath due to lung mets was what made me go to the ER over 8 years ago.  I also had mets to liver and bones.  I had the same procedure as you and my first chemo was Taxotere and Adriamycin.  While the story is different for my liver and bones, the lung mets never returned in 8 years.  There is hope.  Best to you in the New Year!     Judi

kalyla

Oh,  thank you all for your kind words. I take great encouragement from you ladies who have gone down this road before me. The stuff I read on the internet about lung mets sounded like I'd need to start making funeral plans soon, I'm soooo relieved to hear from people who's symtoms were helped by treatment.

I'm on 2 inhalers, Flovent; 3 puffs 2x per day, and also a rescue inhaler; Abuterol, to be taken when needed, but only every 4-6 hours. I wish I could take it every 45 minutes... The doc had me on prednesone, but he said to stop it so I could take Dexamethasone 2x per day the day before, of and after chemo. I took the last one for this week with dinner tonight, and now I'm wondering if I should start up the prednosone again tomorrow, or do without it, hmm, I really don't know what I should do. I think the onc said to stop the prednosone. I hope the inhalers will be enough. At least, maybe I'll have a chance to sleep alittle, I feel so wired from all these drugs...

palaminoridesagain

Kayla:  How about inhalers that have prednisone in them?  We finally tried Symbicort and Spririva.  I can also do Atrovent inhalers by nebulizer every 4 hours.  I had to go on the medrol dose pak a few times too. 

I just wanted to share with you, knowing how you are feeling right now - that the fear and the stress made my breathing worse.  When I was surfing the net I read awful things about pleural mets.  According to them I should have been long gone and here I am still working full time.  I had to be in the hospital for 3 days in November - the week of Thanks Giving!  The nurses taught me a trick.  It was so hard to breath and I had a chest tube so I was in pain too.  They would say to me breath through your nose, slowly let it out through your mouth.  It doesn't work all the time, but it works.  Don't give up on the shortness of breath.  Keep your doctors on their toes until they find the right medicines or inhalers that will help you with your symptoms.   Thats the key.  I had decadron today with my chemo and yes I am breathing better and not coughing tonight!

nnn

RobinWendy

Just wanted to chime in that I have been living with mets to the lungs for SIX years.  I have been fortunate to be asymptomatic the entire time... no shortness of breath and no excess fluids.  I hope your chemo regiment puts you where I am... no symptoms.  Do not make your funeral plans.. Let's see how your chemo works out.

PM me or post whenever you need to vent or whatever.

Robin 

Kodapants

Kalyla,I wanted to ask you did you have neoadjuvant chemo prior to surgery and then chemo after? I was diagnosed in 4/07 stage 3, grade 3 ER+, PR+. My right nodes lit up prior to neoadjuvant chemo, but nodes neg after chem. However, after surgery my right breast still had cancer and they found cancer in my left. I feel every day I am waiting for the stage 4 symptoms and diagnosis.

Myrajuc

Hi Kalyla,

I have lung mets.  I started coughing around September/October last year.  In February, I was on oxygen, 24/7.  And in March I was hospitalized for a week.  I was given months to live.

They had to drain my lung every week.  To the point where my pulmonologist wanted to put permanent drains, which I didn't want at all.

Since they told me my future was bleak, I wanted to go home and live the best I can: opting for quality of life.  So I chose Navelbine, the less toxic of chemo.

In barely 2 months, I was off oxygen!!!  That was such a relief.  I had to carry a portable tank with me, good for 2-4 hours, everywhere I went.  And the tubes were all over my house, even used it taking a shower and sleeping.  To the point my nose bled, because it was causing it to dry, and crack.

I was on Navelbine for 6 months.  Minimal side effects.  My hair thinned, but did not completely lose it.  The 4x4 cm tumor on my lung was gone.  And the effusion was also gone.  As I said, I was off oxygen, which was such a relief!!!

I took a break off Navelbine for 3 months, because it was causing low WBC, and had to get Neupogen, which was causing bone aches.  Unfortunately I discovered two lumps on my other breast, and I just recently had another mastectomy.

I can still breathe, no coughing, no oxygen; I think my lungs are really good.

I have an appointment tomorrow to discuss chemo for this new mets to the breast.  I just had a PET last week to see status on the lungs.

By this time you probably started chemo already?  Please post so we can compare?

Thanks. 

swimangel72

Kalyla I'm so sorry you're suffering with the breathing problems and pray the treatments will help really soon! The women here with lung mets sound very knowledgable and supportive........it makes me feel confident that you too will beat the beast back into it's cage quickly!

kalyla

Chemo is tolerable with very mild nausea that I can easily take care of with compazine. I Still have the nagging cough, though, and it is SOOO annoying that I can't relax in a chair or stay in any position without starting to hack, urgh. Hopefully, this will begin to resolve soon, I hope so.

Now I need to make some decisions about my hair. The doc said it will thin, but not fall out completely. And he does not want me to dye it with the regular harsh chemicals. I'd be 75% gray without dye, I don't know what to do so I asked my hairdresser to find out about some less harsh dyes, or even a shampoo, etc so I won't have to wear a wig forever... Or, I could embrace the gray, haha, not likely.