carls

I would like to sincerely thank everyone here for their support, encouragement and advice. Unfortunately my father lost his fight 3 weeks ago but this site was a tremendous help to all of us. I would like to offer the following adivce: I encourage everyone to seek a second opinion. we never had the chance to do so with my father because when he was first diagnosed he was in too much pain to be taken anywhere (we wanted to go to the states). we kept hoping there would be a better time to go but that time never came. when i finally sent his file to MD Anderson they called me back and informed me there was nothing left they could do. however, from that brief converstation we had we learned that there were specialists who deal with neuro-endocrine lung cancer which is what my father had. when we looked on the web we learned that this cancer was very rare and he also had non small cell, large cell which was even more rare for this type of lung cacner. I wish we had gone to the states earlier, as it now seems that there is a small possibility that the cancer started in the adrenal gland and not the lung. anyway, thank you all for your help and please seek second opinions when ever possible.

has anyone been diagnosed with nonsmall cell large cell neuroendocrine lung cancer? what type of chemo have you been given?

my father's situtation sounds similar to yours. I am wondering why he has not been put on alimta. he has several unstable brain mets I'm wondering if that is the reason. He is also in a lot of pain and I know some docs have recomended a morphoine pump.

this was on the cnn website and seems like it is very promising. I hope this will work!! here is the link http://mp.aol.com/speed.adp?url=%2fvide ... %2ep7%2eR1

my father has had no success with any of the treatments. he is now very weak and unable to move around on his own and he is ocasionally usuing oxygen. We have heard great success about avistin and or alimta but his onc was hesistant bc he has brain mets. is there anyone on this site who has brain mets but is on avastin or alimta??

carls' brother here, we live in canada, is there anyway to have them shipped? when i went to order there was only an option for state, not country . They look cool so i hope i can buy them thanx Katie!

I have read all the postings about RFA under the 'good news' message board. It seems like a possibiltiy for my father. However, he has brain mets and I am wodering if anyone has brain mets and has had success with this procedure? If so where did you have it done? what doctor performed the procedure?

it seems we are in a similar situation. we are not sure where to go becuase so many treatments have no worked. we are now on iressa but seeing that it is similar to tarceva we are not sure how its going to work. we are also interested in getting my father into clinical trials but it seems difficult becuase he has brain mets. with regards to your question we do lots of reserach on the internet, and on this site and continue to ask our docs numerous questions. goood luck!!

this sounds great. does anyone one know if docs will do it if the patient has mets to brain?

we met with a whole team of doctors yesterday. the onc said the lung was no better and tarceva (the 3rd treatment) he has been on is not working. she said to meet with the clinical trial team and see what they can offer. they told us there is nothing bc dad has mets to the brain. we must now decide if we start iressa but our understanding is that it is a sister drug to tarceva and some what less successful. we are also considering going ot the states but bc he has mets to the brain it seems he is not a candidate for very many clinical trials. do any of you have stage iv with mets to brain?? what r u taking???? on a better note we saw his radiation doc who was very pleased with the radiation to his brain. although the lesions arent gone they are much smaller. he is also having radiation on part of his spine that is causing him pain. a question: how can i post a little bio at the end of my postings to doccument treatments etc???

my father was just taken off tarceva becuase his onc didnt feel it was working. we were then considering avistan and altima because we read about it online. we do not have it in canada. he has mets to the brain and we heard from our onc that recent studies are saying it is various dangerous for ppl to take it with mets to the brain. she was at a conference which took place in florida and when we did a search on google we found some info that scared us. it said if you have brain mets there is a risk of internal bleeding in the brain. we are now not sure where to turn. there are no clinical trials where he is a candiate in canada becuase he has mets to the brain. we were considering iressa but arent sure if it will work because it is a sister drug to tarceva. for now he is taking nothing but prayers.

Unfortunately the tarceva was not as successful as we have hoped and my fathers onc has taken him off of it. They are considering putting him on iressa but apparently they are very similar and if one didn't work the other likely won't either. We are from Canada and are considering coming to the states for a second opinon. Has anyone had any success at sloan kettering, or any hospitals in buffalo? 3 treatments have failed, so we are willing to try anything!!!! He is stage iv nsclc with met to bones, brain, adrenal.

any suggestions on what to do for very dry and irritated skin as a result of taking tarceva.

Well its been a long 3 weeks. 5 weeks ago my father went onto Tarceva becasue the other treatments were not working. At that time the docs suggested that we move my wedding up from June. They had found new activity in the brain and really didnt give us much to go on. He went though 8 sessions of WBR. At his 3 week appointment the lung looked stable. In that time I also got married . His next appointment is next week and we are keeping our fingers crossed. His main problem now is dealing with all the side effects from the meds. He has constant hiccups, very dry and sore skin, and he is very tired. Other than that we are hoping for the best!!!!!

my father has been on tarceva for about two weeks now and has been experiencing the worst case of hiccups. His doctor has prescribed something for them. Has anyone else expierenced this?

My father met with the radiologist yesterday and they decided to go ahead a radiate his brain for the second time. He will have 8 consecutive treatments. In addition, they have taken him off chemo because it was not working and he is now on tarceva. hoping for the best.

Sorry to hear what you are going through. We are going through the same thing. My dads radiation on the brain was unsuccessful and I was wondreing what WBR is, where u are having it done and who the doc is? perhaps this is an option for my dad.

for anyone who has had it, what hospitals have you had it done at? Who were the doctors? I live in Canada and we are not sure if it is available her, but it seems like a alternative treatment seeing that the radiation and chemo did not work. Thanks again for all your warm wishes and support!!!!!!!! Any info is greatly appreciated!

It seems the chemo was not working. The tumors in the brain got worse and same with the tumor in the lung. The radiation done on the bones was also not successful. He is now being put onto Tarceva. Has anyone been on Tarceva long term?

we all understand what you are going through. it is great that you found this site becuase it offers so much hope and as you will see there are many long time survivors. my dad was diagnosed last may and we know that we can not ever lose hope!

My dad, 51, was diagnosed last may with stage iv lung cancer. His symptoms first started as a cough and his Respirologist told him it was pneumonia. When it did not clear up with antibiotics they said it was a benign tumor and we were referred to a thoracic surgeon. After a battery of tests that went on all summer he was diagnosed with stage iv nsclc that spread to the adrenal gland. After being on chemo (a combination of gemcitabine and cisplatin) for 2 rounds they found tumors in his brain. They radiated and switched him to a new chemo (taxetier). He has been on it since and his lung tumor is stable. However, the cancer spread to the bones (spine, rib, arm). Radiation was done in these places to alleviate pain. Although the xray of the chest looked stable he is still in a lot of pain and has been vomiting. The doctor ordered another mri of the brain and pelvis. We are waiting on results. Lately, he has been very depressed. I am the oldest of 3 kids, 22, 20, and 15 and my mother, (his wife of 27 years) are all working very hard to keep him positive!! we have a very supportive family (extended as well) which really helps and this site is great!!!! I also got engaged 2 months ago and the wedding is in June, this is also giving him something to look foward to:)

My dad was diagnosed with stage IV lc last May. When I first found out I tried to find as much information online as I could. It was not helpful because the information I was getting was very discouraging. When I finally found this website that all changed. This site offers so much hope!!! My dad is on a second form of chemo becuase the first chemo did not work and the cancer spread to his brain and bones. He is still going for chemo and he has had radiation on his brain and bones. We are trying to stay positive!