jd

my dad is on iressa....got the rash on face and other places, now the rash is gone....anyone else have this happen? Or is it more likely he stopped taking the drug.....just curious...thanks.

dear Beth: I will add you in my prayers tonight. May God give you the strength to get well and be strong. JD

My dad had it. And it went very well. Just prepare yourself and mom for the "head gear" you have to wear until the surgury is over. It is like a metal frame that they attach to your head. Dad said it was the only discomfort. Surgury went well, he went to bed that evening and my sister checked on him every 2 hrs and someone stayed with him for 48 hrs. But he had NOT ONE SIDEEFFECT not even a headache. Was putzing around the house the next day, cooking, reading like nothing happened.........so, I wouldn't have any fears. It was just a LONG day cuz he had to get there at 6 am and they didn't actually do the surgury until 7 pm. The morning they did scans and then it was just a wait all day.......

Cat: Just go to the records dept at your hosptial/doctors office. And ask for a records request. Then you can have them mail you the test reports and doctor notes/reports. It will cost you, if you hav ethem sent to you, but I find it is worth it. Then what I do it open up a medical online dictionary (there are some free ones on the net) when I get to word that they use that I don't know what the heck they are saying, I look it up and "translate it" for myself. sometimes it's like reading a foreign language...... Good Luck j

BEth: I don't have cancer (my dad does) but I can say this. You know no one is promised tommarrow. I could walk out the door tommarrow and drop dead from a heart attack. My cousin (a long time ago ) died when she was 21 in a drowning accident in the lake. She didn't have cancer and the thought of dying never crossed her mind. So, you have cancer. It will be okay, fight like hell and don't let the cancer tell you how you are going to live......

So, I ordered copies of my dad's full medical reports. Cause I don't think the doctors "tell you everything" during office visits. I don't think it is on purpose but they are concerned with evaluating the patient and addressing new topics and all the details get missed or lost in the translation. Anyway, I spent the last day reading the "whole medical story" with the help of an online medical dictionary. Very informative and helpful for the road ahead. For instance, I learned that the new mets to the hip and glands are new since April. Doctor didn't mention this....it isn't the best news but I am glad we now know............ Anyway, I would recomend that ya'll spend the money and order the records at least the test results with doctor notes, commentary, etc.....

beth what stage are you at? Just curious.

anyone know the benefits versus these two drugs and why a doctor would prescrip. one vrs another.... Dad is taking Iressa, starting today...then dctr may start up chemo again Dctr said that can't start chemo right now cause just had radiation.....anyone hear of that before. Gracias J

More bad news today... PET and bone scan shows Mets to Hip and adrendal glad. The dct has now canceled radiation to lung and lymph node cause of the new met locations... Says to go back on chemo....why they can't do radiation to the lung area to help breathing is beyond me.....

Well, we will see if the treatment regimine is going to be the same....just heard under the radar that the tech said on the bone scan that there are 2 more mets to the hip and shoulder. No word on the Pet scan yet. I think they are only planning 3 actual zaps. 2 spots on one day and see how he can take it, if can't then 2 x per week. Seems odd they are only going to do 3 total zaps (one set per week for 3 weeks), when you guys all seem to be doing lots more....wonder if they are doing a higher dose? Who the heck can keep up with all the changes anymore.. Yes, the lymph node one, I think was going to be near or around the esphogus. He coughs so hard once in a while that he actually turns blue. No, he isn't on Oxygen. They are also going to zap the main tumor in the lung....he actually stopped the coughing after he quit smoking. But as the tumor has grown the coughing is back..... Right now, my dad is VERY angry and taking it out on me AGAIN. It is so frustrating. My sister deals with him every day and is frustrated and tired and again, it is easier to be mad at me than to say it is to much. I am not the "jerk again" because I had gotten us 2nd oppinion appts and dad felt that they conflicted with a VERY minor thing and I was just trying to control the situation. Which is obnoxius bc he is the one that asked me to help and told me to set up the appts. It isn't my fault that the 2nd oppinion dcts felt it was urgent and wanted him in right away and cleared their schedules. So, for all my help, I got a big kick in the *ss and called TERRIBLE, vile names because the 2nd oppinion appts could not reschedule. My sister whines and yells when I do not help her and then Yells and whines when I do offer to help or do help her out. I just can't win. I think they want me to make it all go away and when I can't I am being a jerk..... I am supposed to go home this weekend with my husband and baby but don't think I can because I can't listen to people calling me terrible names and taking out their frustration on me. I didn't refuse to go to the doctor about the cough (that we all told him to see a dctr about) for the last 15 years. This isn't my fault, why do I need to be beat up. My husband is so tired of this that he says he can't sit their and watch his wife be beaten on anymore and is going to tell them to shut up next time they start attacking me. I wanted to go home to make sure my dad got to see the baby but if they are going to attack me, then that isn't a good enviroment for the baby.....I just don't know what to do anymore. I am damed if I do and damed if I don't. Sorry, I know this isn't my orginal question, I am just so upset and needed to vent really. I understand my dad is very ill and my sister and dad are scared but I just can't be people's punching bag anymore. It is all just to terrible..... I am to tired myself and don't have the heart for it.

Question: My dad is having Rad to chest tumor and lymph areas (new esphogus) on Monday....wondering what side effects he might experience and when do they typically start. (So, we can mentally prepare) Know that all treatment affects people different but wanted to get an idea.... thanks

The ironic part is my dad is having G. Knife today as well. He has the hallo on right now and they are in a holding patter because they have to go back and take more pictures. Why would they need more pictures when they just took some (with the frame on) this morning. Wondering at my desk if they found some new mets this morning.......... They were scheduled to do it earlier but now won't start until after 4:30 pm......long day. Is it standard to get the steriod after surgury?

Why would spread to bones make a difference in chemo treatment? He is having a PET scan as well......

Hey all, My dad is having a bone marrow test. Does anyone know why they would do this? Has anyone else heard of anyone doing this. He has stage 4 lung cancer, met to the brain, return of mets to the brain, lung tummor regrowing......... Just curious.......

Thought I would update. Dad didn't go to Mayo. Went to the Appt I got him at U of Chicago. Radiation Onc. changed protocol from other Onc. and now they are doing Gamma Knife to head and radiation to lung/throat area...then see what happens next. Not doing WBR, reserving that for future met to brain.....so, i guess in the end it worked out. But wouldn't have if I hadn't fought it tooth and nail.....sister is hating me again and dad thinks I suck. Why am I helping again?????? Probably the last time I get involved, sick to death of being called terrible horrible names when they ask me to help and then I help and then when I do what they ask and I the one at fault cause I am the bearer of the bad news.. Thanks for all your kind advice. If I hadn't heard it again that the radiation was right and the chemo was wrong for the mets to the brain, I would have given up. Thanks special to Dr. W. I forward your message to my dad and I think that tipped the scale!! I am just glad the right thing is getting done. PS: Not looking forward to hearing about him doing the radiation to lung mass/esophogus area. Sideeffects don't sound pleasant but if it buys a little more time I guess that is okay......don't frear the Gamma Knife cause that doesn't sound as bad from what I read.... Thanks again all and God Bless each and every one of you! Especially those that are ill themselves but care enough to try to help other people. May God take extra care of you.

No he has not had Whole Brain Radiation (WBR) yet. So, from what Mayo says that or Gamma Knife to the mets are still an option. He had localized radiation to the pit region. That tumor was 1.5 cm and had crushed the pituatary and was pressing on the optic nerve (?) causing vision loss (25%) in the both eyes, lower quandrant. The MRI is clean in that region and there doesn't appear to be back in that area. Here is the exact locations of the two NEW brain mets. (I probbaly will spell some of this wrong, so hopefully you will get the point) I made the dr at Chicago read it to me off the rad. report. Tumor 1 Inferior aspect of the right tantanonum <1 cm Tumor 2 Punctate focus of enhancment (?) along the right cerebellum, again < 1cm He has another appt with the radiologist dctr tommarrow that I demanded on Wds for. Hopefully, the other dctr will revisit the chemo study plan. I have to emphasise that overal my dad's health is GOOD. He has a cough, due to the lung tumor near his wind pipe. But besides that he is able to walk around fine, can work, looks good, has gained weight. If you didn't know about the lung tumor or brain mets, you would think he has a "smokers cough". Can you belive the doctor at U of Chicago actually said he was "insulted that we didn't accept fully his recomendation and had questions regarding his plan". Oh, then he tried to back track and say he was joking....NOT FUNNY! What normal person doesn't get a 2nd oppinion when it is the person's life and or quality of life at stake. WHO THE HECK SAYS THAT! I am so frustrated right now. I also think U of Chicago is the worst hospital EVER!

Robet, et all: Yes, the tumors are regrowing in the brain and in the lung. The tumor in the pit region did not come back. These are in a new area of the brain. I thnk they are surface ones < 1 cm each. The one that "killed the pituatary and hurt his vision" was 1.5 cm. Anyway, I tried to tell the U of chicago that the only treatment that has "worked" so far was the radiation, so WHY THE HECK aren't we doing in again in the brain first then mess with chemo. He just is so insistant that you don't have to treat brain mets until you have symptoms where as Mayo says "Umm, if you have symptoms you have brain damage and probably can't correct that. SO, better to deal with it before that UNLESS you are REALLY REALLY sick with the lung mass." The U of chicago person wants to put dad in the following study: " A phase 2 trial of temolozomide and Irionotecan as a second line treatment of advanced nonsmall cell lung cancer." Protocol 11461A U of Chc thinks this will help the brain mets....... I guess it is a small trial with only like 40+ people. Went to National Cancer Institute and it isn't listed when I checked on it. .....wierd because all the other trials offered to us were there.........another reason I don't like this study. I don't know what to do......I had to cancel the appts because he wouldn't show and couldn't take that chance from someone else and I couldn't reschedule them becuause they were pulled out of the sky appts by the grace of God. (they got us the appts at Mayo within a week) I think my dad want to start the study and then go to Mayo to see what they say. I also couldn't reschedule because I fear by then it will be to late by the time we see them, get their idea, go home, process the info, try to find a new doctor, etc.....time is a precious thing. UGH! I think I may get a brain tumor myself from the stress. I just don't know what to do.....

Well, it is like where do I start. My dad has stage 4 lung cancer, met to brain. INitial brain tumor 1.5 cm He was treated at Mayo in Oct. with resection to tumor to pituatary, then to U of CHciago for Radiation (after much fighting with the doctor) to the pit region and the standard chemo. LUng Tumor said to be stable, brain tumor gone. Got off treatment for a vacation (around april) went back for a follow up visit about 2 weeks ago, not surprising, we got regrowth in lung. My sister and I argued with the dct to do an MRI of the head. Doctor resisted but then relented. NO SURPRISE TO me and my sister, 2 new growths in the brain, <1cm. a piece. Dctr at U of Chicago says "In my oppinion" brain tumors that are not causing symptoms are insignficant and do not need to be treated that the he needs to be on chemo first and wait until you have symptoms before you treat the brain tumors. Wants to put dad on chemo study (one that supposeofly crosses the blood brain barrier). Called Mayo Clinic in Rochester, said that was wrong, that you treat brain tumors ALWAYS when then are small. LIke with Gamma Knife, or whole brain, etc. or even direct surgury but unless you are in REALLLY bad shape you treat the brain tumor first then the lung disease. Dad is in good shape has gained weight, looks grand. So, my dad and sister ran away on a trip not to deal with it. Got Mayo clinic to get us an appt within a week to help us sort it out. Dad wanted me to call and reschedule because timing was inconvient with his work and dentist appt. Of course, dad and sister think I am overreacting and that this isn't life or death when the MAYO told me so. So, dad isn't going to show to the appt at the Mayo Clinic. So, I had to cancel the appts. Got the radiation dctr involved at the U of Chicago to relook at dad and see if he is or is not having brain sysmptoms. AT TOTAL LOSS............The Mayo said this study would do NOTHING for my dad and the wasted time would make the brain tumors worse. U of Chicago dctr is a moron. He HATES the Mayo. When I mention their name he gets made...... Help, Help Help