I'm scared - 1268788

hi Janine. yes sorry I was talking on my phone as I am now and some of the words get messed up. yes he has 5 Mets to the brain. I believe I know quite a bit about SCLC. my husband's is extensive. he has already had whole brain radiation and that was after he had reconstructive brain surgery where they removed part of his skull in order to allow one of his mets to have a place to swell during radiation. he has also had radiation to the tumor in his lung which almost irradicated it completely. after that he began 6 rounds of chemo however he went by himself on the fifth round for the fifth cycles end and he said they told him that he would have no more chemo until it's time. I will have to check with the doctor on that when he sees her on the 19th.so we have pretty much done everything that can be done with his small cell lung carcinoma with 5 mets to the brain. I pretty much know all the doctors and nurses very well along with the nurse advocates. my husband is a tall man at six foot six inches and he weighs two hundred and seventy two pounds. like I said he is doing very well on the chemo and they did say that the Mets as well as the long has shrunk in to a very small size. the chemo does not affect the brain however the radiation that he had is keeping them in check. He has already gone for an MRI with contrast 4 weeks into his chemo which came back fine. He has no other cancer spreading that we know of. however his doctor did tell me privately that when the second line comes in given his overall age and health and the type of cancer that he has that it will be far less likely the chemo will be as effective. aside from that and as we wait I just found it that he was all of a sudden having these visions. he says that he sees flashes of light and that he sees small black figures in great detail walking about a city that looks similar to New York, in which he has never been, and cars driving about. this only occurs when his eyes are closed and he is resting but not.

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... But he is not yet asleep. he says that he has held off on telling me this not to worry me but that it has been really bothering him especially because it keeps him from sleeping. aside from this he has been having bouts of chest pains that he says feels like someone is pounding his chest with a hammer yet there are no problems that can be detected with his chest or heart.as you can imagine it has been a long gand and cruel Road for the both of us but because I know what the doctor has said and he does not I feel like I am in a constant state of waiting. it is a horrible horrible experience. one day it's like nothing is wrong with him and the next we both think it may be his last day. I don't know when the end will come. only God knows when the end will come. however I am curious to know if anyone else is had such visions and if it could possibly mean it's one small step towards the end. FYI he is and has been on steroids he is also on oxycotton for pain 10 milligrams along with one milligram of xanax and of course the steroids upped his sugar so he is on medication for that as well along with atenolol for blood pressure.

....wanted to also add that none of these medications are new to him. He has been on them now for months so I don't believe it is the medication that is causing the visions.

Ill discuss it with his doctor. We do not know yet if there has been a reaccurance to the brain mets. Im sure shell be ordering another diagnostic soon. Thanks again.

I have another question....although im not asked the "when" question...its more of a "what" question. When the end is near...what should it be that triggers me to know? The doctor told me bad stomach pain and him being ambulatory. Great. He has stomach pain all the time..especially because he eats lots of southern fried foods. He is also sleeping alot due to chemo. I mean...i dont know what to look for. If it goes quick...what will happen? Generally? If its a slow pace I may have more time to call in hospice...which has not yet been suggested by his doctor. Right now with the not knowing? Every ache and pain im thinking "could this be it?" I cry alone. Im keeping my stress under control and crying it out aline and away from him helps. But when it happens...im going to be a wreck. Even though i feel like i am in the pre mourning stages one is never really prepared. We are so close and so much in love. But when the end is hear i want to know so i can make sure i dont run to the store thinking hes still ok, you know what im saying? I dont want to alarm him either by him wondering why im sticking around. So i need a little somethin somethin to go on here.

As for things that have already gone on aside from his recent visions are things that have gone on for a while....like bad memory...thinking someonevis at the door or on the phone when there is no knock or ring...but mostly memory loss...muscle pains...etc. i have already read about him possibly losing interest in activities he once loved and he has slowed down but hasnt stopped...although most times hes too tired or getd bored fast and wants to go home. He also still likes seeing people.

So can anyone tell me what would be very cognitive of an experience im too look for? Something that would really make me know...maybe something that isnt so much individualized byveach different sclc pstient...but something they ALL do??

Thx

Ps....my avatar...i cant seem to get my whole face in the photo. Does it have to be a certain size?

Sorry..me again. Before anyone answers i just read an article here. I forget by who. But it mentioned loss of appetite and sleeping more....going from bed to chair and bed again...and eventually staying in bed as the last signs. Ok my husband has gained 10 lbs but doc says thats probably from the steroids. Some days he eats well but like today he only wanted a small breakfast ...no lunch just picking...and a decent dinner. He IS sleeping a lot and then yes...goes right to his kitchen chair. Sometimes he does that often going right back to bed. During the day lots of napping but then like yesterday being his birthday he stayed up and about all day so today he is very tired. He is out of breath a lot but still smokes..a LOT. he doesnt care. Says he cant and wont quit. For the past two weeks about three times he said "i feel bad". He cant explain exactly whst ails him...just generally feels bad. So...he has all of those symptoms but they are not steady. They are on and off again. This is why one dsy i think OMG and the next im saying WHEW HES FINE. tomorrow he is planning a fishing trip with a friend about an hour away. Im worried its too far if he gets ill but its nice tho to see him be excited to go. I guess what i need to be looking for is a slow decline of wanting to do anything at all on any given day? No matter what the activity?

Thank you amd5 but he isnt on any sleeping pills. He tried them once a long time ago but they didnt work. He sleeps more during the day then at night but altho he says he has trouble sleeping i know he does sllep well and alot. I check on him all the time. But no...no sleeping pills. The meds hes on now have been regular for a long time now. Its the visions that are new.

Thank you so much! I see doc on the 19th with him. Also...in the end phase and all i described? Anything to add there?

I understand. Thank you again for your response. Ill keep yall posted.

Ladyrose