mary colleen

Dorimay, Lots of cancer patients have some aspects of paraneoplastic syndrome. My husband has had some manifestations of it, even prior to diagnosis (he was ill for quite a while before his diagnosis.) It has quite a few signs and symptoms - what kind of problems are you having? MC

All: My husband is in a "quiet period" in LC right now, after a tough year. I can't speak for everyone, but during good times and especially during not so good times, I NEED the prospect of hope that that folks who are doing well bring here. It allows me to carry that hopefulness back to him. I also need the perspective of surviving loved ones, and I need the experience of helping to support those who may be struggling at a given moment. As they say - "it takes all kinds". That has never been truer anywhere than it is here. Just my 2 cents worth. Mary Colleen

Hi, and welcome! I know that one can feel pretty isolated with this illness - not a lot of people who can understand your concerns, questions, worries. You'll find plenty of people to talk to here. So glad you found us. Tell us all about yourself and you'll find that someone will always be able to weigh in on any questions. Mary Colleen

You're not crazy, Teri. You're healthy, normal and grieving. Don't hesitate to put in writing to us here anything you need to. MC

http://professional.cancerconsultants.c ... x?id=40477 Nova, not sure if the above attached as a link or not - I'm not very slick with the attachments - but it discusses a recent phase 2 study showing some promise for this drug in SCLC. Good luck.

I agree with Kelly - cry if it will come. It helps - it's almost as if the release lets you clear your thoughts and gear up for the next steps. I'll be thinking of you...keep us posted. Mary Colleen

My husband went about 6 weeks after the end of WBR. We were told that it was best to wait that long in order for treatment related changes to settle down. By the way, he had some really pronounced neuro symptoms at that point. Both I and the doctor thought he may have another met - he didn't. Since then, those symptoms have improved a lot. MC

Welcome. I am so sorry about your twin sister. How very difficult for you. You stay tough and keep us posted - this is a good and helpful place. Mary Colleen

I am so sorry for your loss, and so wishing you strength for the days ahead. I think that you would find special identification in some of Teri W's recent posts. The services sound beautiful and meaningful; Joe is certainly very proud and honored.

Bucky, I agree with all of the above - especially the part about you being one who will live WITH cancer, and the part about going to do something fun with your weekend! Mary Colleen

My husband also has squamous cell cancer, diagnosed at Stage 2B a year ago. He also had a fairly large brain met in April, had brain surgery to remove it, and then follow up whole brain radiation this summer. Though we were also devastated at the development of a brain met, we have found that life goes on. Now that he is finished with the brain surgery and radiation and has had some time to truly recover, we are once again living a fairly normal day to day life. Please understand that this is a pretty common LC development, and is treatable, either with resection, focused radiation, whole brain radiation, or some combination of any of these. Don't let the term "brain mets" scare you, and know that life does go on. Keep us posted. Mary Colleen

I am very happy that your Mom seems to be improving, and I would take it as a hopeful sign. However, I would still see if her doctor is willing to do an MRI. MC

Debbie, I agree - your mother needs to be checked soon for a possible brain met. Good luck.

I am so sorry. God bless. MC

Teri, I'm very happy that your trip was so good. The biggest outcome there is that you cemented your ongoing, permanent family relationships...which means that Bill lives on in a very important way. MC

You'll be in my prayers as you get your scans. It's great to see you posting! ....and yes, once in a while you run into people that will use any circumstance for their own gain. I think we've all seen that someplace in life at one time or another. Just rise above it:) Keep us posted this week! Mary Colleen

Heather, my husband completed WBR in late June. He has had a lot of trouble with the ear sensitivity, headaches, and dizziness. He did not take any Decadron with or after his treatment, so did not have the side effects associated with that. For the headaches, he prefers OTC meds and finds that aceteminophen works better than ibuprofen. We have also found that it is better to stay a bit ahead of them, and just take low doses of Tylenol 3-4 times daily. For the ears, he was diagnosed with fluid and inflammation in his ears (common with WBR),and was given steroid drops to use 3x daily. We saw a neurologist last week regarding (in addition to other things) the dizziness. He said that this is just going to take months to subside and that there is not a lot to do about it. I know this must be so hard for you with little ones at home. My husband is struggling with his recovery, and he gets to rest quietly at home all day. (Our kids are kinda sorta grown). I cannot imagine the willpower it takes you to mother young children right now. I really hope that you have some assistance. I say this especially because the neurologist stressed to us that rest and sleep are very important in this recovery period. Take good care of yourself, and yell out to friends and family for help if you need it. MC

Ry, I am so very sorry for this. MC

Patty, Decadron, your steroid, is really powerful and does to some people what it did to you. On the other hand, it should help to minimize some of your chemo symptoms. You can always check out whether you may be able to have a dose reduction if in the long run you have big issues with it. Mary

Thanks, Welthy and Ned. I can see from my previous post that I was starting to get a little testy after the appointment today. I think I am just weary of recounting the entire litany to medical people in front of my husband, who is right now not really able to answer things easily and becomes a little confused at questions. I feel badly for him. This is not him, and I hate for his sake to have to speak for him. He has always been very strong and independent, and right now isn't sure if he is understanding questions correctly or not. I do understand your point Ned, and would readily agree that I am a "big picture" person. Anything that appears to be poor logic based on that big picture just grates on me, and sometimes prevents me from even considering possibilities that may leave me with a puzzle piece that doesn't exactly fit in. It's definitely a trait that has tripped me up a few time in the past. Thanks to both of you. On to the neurology doc tomorrow!

Gosh, no problem at all, I didn't even notice! You will learn a lot of the information needed after surgery. When is that scheduled? MC

Welcome, and so sorry you need to be here. As Kasey said - get as much info as you can. It would be helpful to know the type of lung cancer (adenocarcinoma, squamous cell, BAC) and what stage the doctor thinks it is. It sounds as if maybe they think it is a stage 1A or 1B cancer, which would be early stage and would correspond to the 85% 5 year survival mentioned. If that is the case, please know that 85% 5 year survival really means ongoing survival after that for most 5 years survivors. Stay in touch and know that we will be with you!

I really don't know what to think. My husband began a big downhill slide about 4 weeks ago, about 7 weeks after the end of brain radiation. He had recovered from the treatment to a reasonable degree, and was even planning to possibly go back to work after Labor Day. Around mid-August, he suddenly stopped having an appetite and lost 14 pounds. He became more confused and just generally much less functional, began to have balance problems, and over the last week has begun to have a combination of "regular" headaches and stabbing, intermittent head pains. During this period, he has had a clean CT, a clean brain MRI, and decent bloodwork. We saw the radiologist this morning, and he was concerned, but just very vague about what this could be. To be honest, some of the things that he said didn't really make much sense to me - that maybe he has MS or some other new neurological disorder. It just doesn't seem at all probable to me that a guy with lung cancer with a (resected) brain met suddenly has something else too. It just doesn't seem likely to me. Tomorrow we see a neurologist for evaluation and probably a referral for a lumbar puncture. We'll see where that takes us - I guess I'm just venting here, I feel like we are looking down the wrong road medically and it concerns me.

Patty- "SOB" means 'shortness of breath'.

Nova, You words resonate with me in a way that is unusual. I think that you probably said some things that I feel and never put into words or even conscious thought. It must feels as if Harry has gone to a place that you and your children can't join him at, in spite of your willingness to do so. Our situation here is a little different, but has many of the same characteristics. I work all day and my husband (now) stays home alone. I work hard to get home by 5:30 in a job that really requires more so that he is not sitting alone for more hours than necessary, but the evenings are so long. It is as if we are orbiting separately around the big black monster that we don't often acknowledge. I go to bed earlier than I have ever gone to bed in my life simply to shorten the evenings. It's as if it takes undue energy to spend each evening pretending that things are ordinary when they are not. I chat, I talk about the news, I try to make him laugh with the antics of our cats - not a lot of response. My son is 24 and in the Army, my daughter is 20 and in college. When they call at night, he now often declines to take the phone from me to talk to them. It's quiet after so many years of both us us working and hustling through the evenings to get dinner, homework completed, and kids to bed. This is hard and disorienting. The landscape is so strange. I understand how it must be for you, and wish it were easier. I think it may be especially hard for us as women and as mothers - we want to make things right and happy. It's what we are used to doing, and now we can't. It kind of leaves us standing alone. All I can say is that I think I understand, and I'm sorry. You'll be in my prayers. (And bless that young son for giving up football for the year - that is a big deal at his age. He must have quite a heart.) Mary Colleen