I'm scared - 1268788

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ladyrose
I'm scared - 1268788

my husband is 50 years old. he was diagnosed with SCLC in September but I know he had symptoms since July. his oncology doctor told me privately she gives him 6 months. he has been doing very well on chemo with hardly any effects. Only been tired. But he told me today that for the past week and a half he has been having visions of a city with people walking in it and cars driving by when his eyes are closed. this is why he says even when he looks like he's sleeping he can barely sleep at all. He says this has been going on for about 2 weeks now. Twice this week he said he just felt generally ill.he has 5 minutes to the brain and a large golf ball sized tumor of the lung all of which the doctor has said has shrunk and very very considerably. but I don't know what to make of these visions. I am in a perpetual state of weight. I am his wife and I am 55 years old. Are these visions that go on with closed eyes something to do with the end coming? Thank you

catdander
Hi ladyrose, I very sorry

Hi ladyrose, I very sorry your husband and you are going through this.

Although everyone uses words like terrified and horrified everyone is different in their reaction to knowing they are dying soon. I've come to understand it's something I just won't understand.

With that said if you meant your husband has 5 mets on his brain then the visions are more likely from them and can very likely taken care of with radiation to the brain and steroids can work immediately. If brain mets are shrinking from chemo your husband is would be considered in the lucky minority but it does happen more often than we previously thought.

Let the oncologist know he/she may want to try steroids at least to help with symptoms and hope of chemo works to minimize mets.

I don't know if you've read any of our blog post on sclc but they can be very informative if you are interested and certainly can answer many questions you may still have. Following is a link to these posts tagged ex. sclc the second one from the top looks like a good place to start. http://cancergrace.org/lung/category/lung-cancer/core-concepts/sclc-exte...

I hope your husband does well for a long time.
Janine

ladyrose
hi Janine. yes sorry I was

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.

ladyrose
...continued

...continued

... 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.

ladyrose
....wanted to also add that

....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.

JimC
Hi ladyrose,

Hi ladyrose,

I am sorry about everything that you are going through with your dear husband. Many here can empathize with the worry and uncertainty you are dealing with.

Brain metastases can cause hallucinations such as you describe, but if they have been controlled by radiation and swelling minimized by steroids, it seems unlikely to be the cause. My first concern would be the combination of all his medications, so that is something you may want to discuss with his doctors. Holding a particular medication or substituting one drug for another may reveal the cause if the visions cease.

JimC
Forum moderator
.

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>

ladyrose
Ill discuss it with his

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.

ladyrose
I have another question...

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

ladyrose
Ps....my avatar...i cant seem

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

amd5
Taking sleeping pills can

Taking sleeping pills can definitely make you hallucinate. When I was being treated for brain cancer a year ago, I had horrible hallucinations. Fortunately, I decided to quit cold turkey and was able to get off the meds and continue my recovery.

ladyrose
Sorry..me again. Before

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?

ladyrose
Thank you amd5 but he isnt on

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.

JimC
ladyrose,

ladyrose,

The post to which you refer is most likely the GRACE FAQ here. It's hard to say whether this is what is happening to your husband, or whether it is the effect of his chemo, WBR (which can cause pretty profound fatigue) and his medications.

The faculty here have previously discussed a phenomenon know as "steroid psychosis" which can cause delirium. In suggesting that perhaps a reduction in the steroid dosage would help, Dr. Pennell stated:

"Whatever contribution to the confusion that is caused by the steroids should get better quickly once the steroids are weaned off. Lack of sleep can also contribute to delirium, a waxing and waning state of confusion that can sometimes also have hallucinations, and that also should get better quickly if she can sleep. However, brain metastases themselves as well as radiation can contribute to feeling tired and not entirely clear-headed, and delirium can have lots of other causes too, such as infections or electrolyte imbalances. Delirium can be a serious condition, so I would make sure that your MIL's doctor knows about her hallucinations!" - http://cancergrace.org/forums/index.php?topic=2285.msg13681#msg13681

In the same thread, Dr. West stated:

"I agree that steroid effects should resolve within a matter of a few days of weaning off of them. Of course, brain metastases can cause many neurologic symptoms including delirium, though delirium is more often caused by "global" issues like metabolic problems, as Dr. Pennell suggested, than a "focal" problem like brain lesions. However, swelling of the brain tissue around metastases can certainly cause delirium. With so many potential causes, some quite reversible, it merits keeping in good communication with her doctor."

JimC
Forum moderator

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>

ladyrose
Thank you so much! I see doc

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?

JimC
It's just very difficult for

It's just very difficult for anyone online to make a judgment, unlike his doctors who can examine him.

I will say that when my wife had WBR, like many others here on GRACE she suffered from a great deal of fatigue. That profound fatigue (much worse than just being tired) can lead to loss of appetite and perhaps a bit of delirium. So it's possible that is what is going on.

JimC
Forum moderator

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>

ladyrose
I understand. Thank you

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

Ladyrose

catdander
Ladyrose,

Ladyrose,

You sound like you may be in the southeastern part of the US? I am too.

About your picture in the avatar, It always shows up a little smaller so you can make the original larger and centered so that when it shows up in the avatar it fits. Too after you upload the pic onto the site it tells you to crop the pic. I wonder if you didn't see that and it cropped itself tiny. Click around inside the pic after you upload it to see if you can center the hash lines where they need to be and click crop.

Dr. West wrote a blog post on what to expect when during the dying process. Just an FYI, if your husband's doctor thinks he is near the end he/she would/should take your husband off chemo and call in for hospice care. This is a conversation to be had with the doctor. I had that conversation with my husband's doc and the chemo nurses. My husband wasn't interested in having it but I needed it and oncologists are pretty good at having side conversations about care and end of life. http://cancergrace.org/cancer-treatments/2011/05/06/faq-dying-process/