How much worse does it get?

[hockeyma]

How much worse does it get or does it ever get any better? I know we are supposed to be positive and hope but.....I don't even know what to expect now. My husband is on tarceva 150mg - has been for 20 days. He has had a chest infection / shortness of breath/ extreme fatigue, weak, off balance, more weight loss and disoriented - and still no rash. Blood work is ok so it is not low red counts. Chest xray was not good. showing progression in left lung and more pleural fluid in the right. He is on dexamethesone now for inflamation. I know it has only been 20 days but I really think that this is not working. So this is a two folded question....if it isn't working and disease is progressing - how much pain (time) does he have to go through. Second question - anyone had any real turn around good stories with Tarceva - harsh side effects that turn around for the best. His sisters want to come up from out east and I think it is time too. Anyone have any suggestions I would appreciate. thanks for all being so understanding. I hate this disease. Heather

[kamataca]

heather,

Of course none of us have crystal balls (how handy would that be!) but turn-arounds are possible. Mom has long periods of time when she is feeling well. We've been told that all of her care is palliative, with no hope for a cure, but the last two years have been good ones.

It's possible. Our Tarceva miracle was that it kept all growth at bay for almost 16 months. Those were good months!

I hope you find some good times soon.

Kelly

[carolhg]

I am so very sorry for the pain that you and your husband are going through. I so agree with you in my HATE for THIS DISEASE. I will continue to pray for you both.

Carol

[raneyf]

As far as the Tarceva goes, I started on it as first line treatment. My doctor did a chest x-ray at 4 weeks and he said he would be o.k. with stability or slight progression at that point. I showed stability and he kept me on the Tarceva for 6 more weeks when he did a CT. CT showed big time progression, so that's when he changed treatments. I guess my point is that my doctor was o.k. with 4 weeks and no shrinkage. However, I think if it showed a lot of progression at 4 weeks he would have switched treatments. I'm so sorry this is happening to your family. I don't know why bad stuff happens to people.

[Ry]

Hopefully it is working for your husband. Many people do not get the rash and the drug works miracles. I hope he gets a break soon- John often says he is sick of being sick. It gets so discouraging-- I am crossing my fingers that Tarceva is your new friend.

[Don Wood]

I do know the agony of seeing a spouse go through all this. Being the caregiver and advocate for your husband is a very tough job. His pain should be controlled by medication -- check with the onc. Hang in there. Don

[teriw]

Hi Heather,

I'm so sorry to read that your hubby isn't doing well. I just want you to know I'm thinking of you and will keep you both in my prayers.

I don't have any experience with Tarceva, but it seems that there are definitely people here who do.

Don't give up hope.