Is this it?

[gillian]

Sorry to sound so gloomy but my lung mets have just taken off during the last two weeks - I am coughing literally non stop night and day. Today my gave me high dose steroids plus codeine and said we could use morphine if we dont get any relief.....

My question is how long can i keep going like this, before my lungs give out? I didnt want to ask him if im at the end because i know oncs can be pessimistic, but can i seriously hold on in this situation? I started a new chemo combo yest and he said our best bet is a chemo that works...trying to get lapatinib too

gilly

[saleboat]

Hi Gilly,

I am just writing to let you know that I read your post, and my heart goes out to you. I am not able to respond to your question with any great insight (I'm not experienced with lung mets), but hope that the recent news on lapatinib helps your situation.

I wish there were more that I could say and do.

I'll be watching for your updates.

Regards,
Jen

[Tom]

I don't know exactly how one might go about it, but we all know now, that GSK is apparently going to ask for a more rapid time schedule for FDA approval of lapatinib. Perhaps if someone other than GSK were to push the drug's story into the media spotlight, it would gather steam and aid the speed at which the FDA moves on it when the timne comes. It's always frustrating to watch a drug with so much potential, simmer just below a full boil, while many of us our wrenching our hands. I'm sure this is a question for Joe to deal with, as he might have some suggestions on strategy.

I don't know about all of you, but I have been looking at lapatinib ever since I first read about it, as the next "rock in the stream", to help move many of us to the promised land, but sometimes the steps get pretty wide. Mom has been having some difficulty, and her upcoming PET/CT and brain MRI will reveal whether the beast has roared it's head again.

I have been annoying all of the oncs with the lapatinib promise for many months, especially when it's schedule of tests toward approval were delayed. I try not to forget that I have had to torment Mom's doctors all along to get off their duffs and do something, particularly when the value of single-agent Herceptin was not clear.

If anyone, especially Joe, has any suggestions for getting Tykerb a mention on the network news, then like Ross Perot, "I'm all ears."

[R.B.]

You might like to read the "Very Thought Provoking" link below if you have not seen it.

It is serious medical article about with a man with soft tissue cancer in the lung, and the possibiltiy that balancing omega three and six intake could have played a significant part in tumour regression.

The implication of diet in BC is still controversial, but many beleive it has a part to play in the fight against this dreadful disease.

I am sorry I cannot post the link but I have not yet figured out why mozilla and this site do not seem to get on and I cannot copy and paste using Mozilla as my browser.

RB

[madubois63]

Do you have a plural effusion (fluid in your lungs) from the lung mets? That is what made me cough the worst. I had the fluid removed and then had my lungs sealed so that the fluid could not build up again. I started Herceptin, carboplaten, taxotere and femara one week later. In three months, the lung mets were gone. Maybe it's time to add a pulmonary or thoracic surgeon to your team.

[CLTann]

Maryann's comment on plural effusion and subsequent sealing the plural space are options for lung cancer treatment. In addition, throat fogging using the machine with butyrol (?) coughing medication may help. Be positive and hope there is a quick favorable turn in your fight against our common enemy.


Ann

[TriciaK]

Dear Gillian, we all understand that panicky feeling you are having; the secret is not to give in to the fear! Do you know for sure your lung mets are growing? It would take a CT or PET scan to tell for sure. The coughing could very likely be due to plueral effusion, fluid in the lungs and chest. It can be taken care of several ways. I had lung mets show up after 20 years from the first BC dx (1985) and 15 years after the second (1990), also her2 for the first time. I spent a month in the hospital, very ill, even had phuemonia. I had all kinds of specialists trying to figure it all out, because I also had a heart attack. The lung specialist took 1 liter of fluid out of my lungs. The oncologist put me on herceptin, femara and navelbine. I started getting better but I have had a persistant cough ever since, even though I am now NED almost 2 years later. The cough may not mean the lung mets are worse. As Maryann stated, you may want to check it out with a lung specialist. As I said, the important thing is to take action against the fear! We are all praying for you, and hope to hear from you again soon. Hugs, Tricia

[Bev]

Hi, I think Ann is saying to use a nebulizer with albuterol. It widens the bronchial passages. I think they also use an oral steroid, prednisone for a similiar purpose. My son uses these meds for asthma. I don't know if it applies to lung mets but it helps asthmatic hacking. Good luck. BB

[gillian]

thank you so much for your great replies - actually my onc did mention something about a little bit of fluid and that the lung cannot really drain properly....but that at this point it is only a chemo that can help....but maybe i will take up the suggestion of a thoracic surgeon I think

thanks a lot - by the way the steroids and codeine have really but a lid on the coughing at least for now...

gillian

[gillian]

further to my post yesterday I did manage to see a thorsacic surgeon and he confirmed that the congestion is not in the pleura but is a 'wetness' that the lungs cannot take care of, so there is nothing to drain, if Im making myself clear.

And yes, I have had a CT scan plus lung xray which confirmed that the lung tumours have grown in size and number...started a 3-combination chemo last Monday and have Xeloda lined up if the xray shows no improvement in three weeks time, after that we are trying to get Lapatinib....fingers crossed.

At the same time, I am leaving it all in God's hands, have a lovely prayer group where I go to every week and this has totally changed my perspective...

thanks again and prayers for you all

gillian xx

[saleboat]

Gillian,

Thank you for your update. I've been thinking of you. I hope you are getting all the answers that you need from your doctors.

Peace,
Jen