New member

[ladyhawk]

Don't know exactly how to use this thing, so will do my best. Just found out you can't leave this page where you are writing to check on something and then come back to it. It will be gone. So I started out with more than I have the patience to rewrite. Sorry

Last May, my husband, 64yo was diagnosed with extensive SCLC. He presented with a seizure, which proved to be caused by multiple-brain-lesion mets. He started chemo, Cisplatin/Ectoplatin (this I am not sure of and will correct later if wrong)When I tried to check this is where I lost all that I had written and couldn't come back to it. He had 6 rounds of 3-day treatments every 3 weeks. Also, he immediately had wb radiation for 10 days.

He had his last round of chemo on Sept 07, 06.

His last MRI of the brain showed only one tiny spot left, and his chest CT scan showed no more tumor there. We have not seen the doctor since those test results Sept 27th. We will see him (oncologist) the 25th of this month, and the tests will be repeated.

He has been doing pretty good I guess, but he is still very, very tired and sleeps most of the time. His appetite is a lot less than it was before he became ill, but he hasn't lost weight. His appetite diminished with the first chemo and radiation and they had him on decadron which brought it back pretty good, and they took him off of that, of course. Then he still had some brain swelling and had to be put back on the decadron for a while, because of nausea. He got over that and was taken off the decadron again, and his appetite was just ok.

He has always been over weight, but now he eats a lot less, but his weight stays the same and his belly remains very distended. I guess you could say that he eats adequately, but not even close to as much as he used to. He lost only about 6 lbs. when he first started chemo, but gained it right back. What I am saying is that I just don't understand how he can eat so little now, and not lose any weight. I know that is a good thing, but it all seems to be in his belly, which I am not sure is a good thing. I know the rest of his body is smaller. Has anyone else experienced this? Usually, weight loss is the problem, but not with him. He says he feels very full when he eats very little. This is very confusing to me. Also, sometimes his breath is so bad that you can't stand to be in the same room with him. It is not his teeth as he has dentures and this is when they are not even in, which is most of the time. He only wears them to eat. Does anyone have any ideas as to what's up with that? We are very encouraged with his results so far, but they have not changed his prognosis of 8 to 12 months.

I read somewhere that mets only to the brain is as good as limited stage SCLC. Does anyone else know of this? Sorry for this being so long, and I really did start out better the first time and lost it all. Thanks for your patience with me. This has been so devastating as you all know, and the stress is eating me up. Thanks all, Lorna

[ljdub]

Hi Lorna, I really don't have answers for you, since my experience has been so different from that of your husband, but I at least wanted to say I'm glad you found this site. You will find so much support and empathy here, from so many others going through similar things, and it helps just knowing you're not alone. I'm sure someone with more suggestions than I have will post a reply very soon, but I just wanted to say hello and welcome, though we all look forward to the day when we don't have to welcome anyone here ever again, because lung cancer will be a thing of the past

[mary colleen]

Lorna, I also have no answers - my experience is not with SCLC. Still, I am glad you are here, and know that others will weigh in with good information for you, so keep checking.

You have had a rough several months, and I hope that you have support yourself.

You'll be in my thoughts!

[MsC1210]

Hello Lorna and welcome,

I am sorry about your need to be here on a site such as this but glad you have joined us.

I have no answers for you, either, but a couple of suggestions. Have you addressed these concerns with your husbands doctor? It would seem to me that you would know best if there is a change in your husband's appearance, such as the way you describe his stomach and the breath issues. I have heard that some medications can cause a type of reaction that can cause bad breath and perhaps that is the case here? I would make a list of things that you have ANY concern about, regardless of whether they seem like small issues or not and have a talk with the doctors. It is always best to keep them informed of anything that seems not right.

Now, keep in mind that there are many people here that have been in your situation. Ask any and all of your questions and know that someone will be along with words of advice and tons of encouragement and HOPE. We are here for you, let us know how we can help and know that we will do our best.

Please keep us posted on your husband as well as you,

My best to you both,

Chris

[Don M]

Hi Loma. I just want to welcome you. I have never heard of your husband's problems as it relates to lc and its treatment. He should talk to his oncologist. I hope he does well with treatment.

If I want to leave the message block briefly and go back, I copy and paste my message to a word document and then past it back to the message block when i return. Using the word document also gives me a chance to use spell check because I am a lousy typist.

You could also open up another instance of lchelp.

don M

[nyka69]

Hi Lorna. I'm sorry you had to find this site.

Regarding your husband's weight and loss of appetite: could he be retaining fluid, causing him to feel full and making it appear that he hasn't lost weight when he gets on a scale? Does he have any swelling in the feet, ankles, or legs? My husband experienced this when he had a pericardial effusion. His upper body looked thinner, while his abdomen and legs looked larger.

With regard to his breath, I can only think of two things that are not related to lc. First, is he well hydrated? Also, some meds can cause dry mouth. When the mouth is dry bacteria breeds and causes bad breath. The other thing is has he had a drastic reduction in carbs (maybe because his appetite isn't good)? This can cause ketosis and a side effect can be bad breath.

I'm sorry I couldn't be more helpful. Wishing you and your husband all the best.

[ernrol]

Lorna,

Welcome to the site. I can't help much with sclc but I am sure there are others here that can.

Stay positive,

Ernie

[recce101]

[Don M] If I want to leave the message block briefly and go back, I copy and paste my message to a word document and then paste it back to the message block when i return. Using the word document also gives me a chance to use spell check because I am a lousy typist...You could also open up another instance of lchelp.

You can also open a new window (shortcut Ctrl+N) and navigate to wherever you want without affecting the original window. Computers are great, but they sure can be frustrating until WE train THEM to behave properly! Aloha,

Ned

[Welthy]

Welcome Lorna,

So sorry about your husband's diagnosis. I hate to see anyone have to make this journey.

I also am not well versed in SCLC, although I lost one of my best friends to it in Sept., but I too have noticed the whole bad breath thing with my husband. I just figured between all the chemo, meds, and really crappy lungs he has, that it all culminated in bad breath. I never mentioned it to him or the doctor.

My husband did struggle with an 18 pound weight loss before diagnosis, but gained most of it back, and now has again lost most of it. His body has become very wasted looking -- I tell him he is my little ol' man now. (He is approaching 70 though.) His stomach is still large, not distended, but it's there. I keep asking him if his right side hurts, because I always fear the whole liver met thing. He also really has to force himself to eat larger portions and gets full awfully fast nowadays. That also worries me, so I get what you are talking about.

We are awaiting scans soon, so that will be the telling tale. I'm surprised that you haven't had regular doctor visits since your husband completed therapy. We see our Oncologist every three-four weeks (sometimes two weeks) regardless of whether he is on chemo or not. I think you might want to call the doctor's office and express your concerns.

Hope things get answered quickly for you and your husband.

(Also, just highlight what you have written, right click, and copy during your message writing. It will automatically save it to your clipboard and you can paste when you come back.)

Welthy

[marym]

Welcome Lorna,

While I cannot relate to all the symptoms you speak of, I also went through a time when the quantity of food I was eating was far less than normal and I had no weight loss. I assumed that the difference in my activity level accounted for it.

I also found my self full and unable to eat another bite - and I would say normally, I would be able to eat a good deal more after I had satisfied need.

This was not true on all chemo,so it was dependent on what I was on. I think Taxotere and Alimta both caused it.

In the 20 or so months since my dx, I have fluctuated about 15 lbs (I can afford this and more, but doctors prefer no weight loss.) I haven't had problems with bad breath or stomach distension, but I have had some fluid retention. Mostly feet and ankles.

The doctor/nurse should be able to provide relief for the problems mentioned.

Good luck.

Mary

[Nick C]

Lorna, looks like some good suggestions ideas so far.

But definitely get to the Dr and have him give you his thoughts. Even if they aren't any different than what you heard here, you'l have that peace of mind.

Welcome and I'm sure you'll find the support you need here.

[EastCoastLadi]

Lorna,

First of all Welcome! and secondly sorry that you have to come here and are going thru all you are. As you can see my husband has SCLC and has been thru much.

As far as the weight loss or lack there of, all I can tell you from my husbands' experience was the less he lost, or more gained was a positive. I would probably discuss it w/ his dr.

I also wanted to let you know, which you may not be aware of is that chemo seeps out of every pore someone has, my husbands' eye dr. told him it comes thru his tear ducts. I know it comes out thru urine, and sweat and I'm assuming saliva as well, as other bodily functions. I'm just guessing but perhaps the odor from his mouth may be related to the chemo and also the medications that he is taking w/ it.

If you see my signature you can see all my husband has and continues to go thru and he's still here, fighting, so there is hope.

Grace

[ladyhawk]

Wow! This group is wonderful. Thanks to all who have answered.

I do plan on asking the onc about the weight and bad breath. I don't know why he hasn't wanted to see him sooner. I tried to talk my husband into seeing him sooner, but he said, "No way". He said he was doing just fine and for me not to worry. Yeah, right. Thanks welthy for your input, I will be interested in knowing the results of the scans.

My husband (Bud) doesn't seem to have any swelling in the legs or ankles, but I have a suspicion that his distended abdomen is from fluid retention there. I know that SCLC can met to tumors in the abdomen. I am wondering if that is what is going on. I too have suspected maybe mets to the liver, but I know he would not tell me if he was having any pain there, unless it was severe. He doesn't want me to worry, and he is not going to tell me anything that would make me worry. We really like our onc and he told us to call if we thought there was anything different, but of course, my husband says there is not. I just feel so helpless. I am afraid the bad breath might be caused from something in his abdomen. It is not consistently really bad. I don't think he is dehydrated. He is on Keppra also, for the seizures, and that is the only med he is on other than diovan for his blood pressure. I know that his activity has waned considerably, but for the difference in the amount he is now eating, I just can't help thinking he should have lost some weight, but he has not. I wish I could get him in to the onc before the 25th, but he will have no part of it, and assures me that he is fine. Can anyone tell me how long it usually takes to recover strength after chemo? It has been 4 months for him and he is still very weak and very sob. Guess I better quit rambling.....you people are wonderful, I wish I had found this group sooner. Thank you, thank you, thank you, Lorna

PS the copy to the clip board suggestion is great, I don't know why i have never thought of that. The other tips were great as well, so there are ways around these stupid computer problems. Like one said, we have to train them, but I'm afraid mine has to train me.