hopeful? Posted July 16, 2009 Share Posted July 16, 2009 I have had severe sob for awhile now which gets progressively worse. I am not sure what happens from and hear and to be honest and am afraid to ask. Other than this symptom I really feel so healthy. I was diagnosed 2years ago stage IV and have been receiving chemo since with mixed results. I have several nodules in both lungs; each scan shows some imrovement in some areas and some progression in others. Unfortunately, the areas with progression are the lower lobes which is where most of your breathing "power" comes from. I know this question has been asked a million times but I have never seen an answer that was conclusive. What happens when I can no longer breathe on my own. Righ now if I were to walk 10' I am completely out of breath. I do not want to be put on a respirator yet also do not want to be gasping for breath. I also feel I am too much of a burden on my family of recent especially my 13 yr. old and am not sure if there are facilities that will take on my care which is becoming a 24/7 need. I am not eligible for hospice as I am still seeking treatment and not ready to give that up yet? I would appreciate any ideas/suggestions in these multiple areas of concern that I have. Thanks Quote Link to comment Share on other sites More sharing options...
jstdzy Posted July 16, 2009 Share Posted July 16, 2009 I'm sorry I have no answers. But I know who probably does. Dr. West at www.cancergrace.org Post your question over there while you what for a response here! Prayers I can do! Prayers on the way! Dana Quote Link to comment Share on other sites More sharing options...
RandyW Posted July 16, 2009 Share Posted July 16, 2009 wondering if it isnt a pleural or pericardia effusion. Build up of fluid around the Lungs as a result of the treatment. A surgery and a couple of days in ICU did it for Deb a while back !!! Quote Link to comment Share on other sites More sharing options...
SandraL Posted July 16, 2009 Share Posted July 16, 2009 hey there. I am sorry to read of your breathing struggles. I have sob as well but not as bad as you. The suggestion of going to cancergrace.org is a good one. It can be the treatments you are receiving as well that are giving you sob. I hope you find some answers and can remain as independent as possible. I know how hard this can be with young kids involved and my heart is with you. Sandra Quote Link to comment Share on other sites More sharing options...
Patti B Posted July 16, 2009 Share Posted July 16, 2009 I am so sorry that you are having SOB problems. I do, too, I think maybe it just comes from having LC. Funny thing is when I had a really good scan 9 weeks ago, doc said my SOB and coughing was because an airway was opening up and my body was trying to get rid of the "gunk" that had built up for so long. Now, I get a bad scan and he tells me thats why!!! So, I don't know if even the docs know the answers to all this. Have you seen your doc lately??? A pleural effusion could be the reason and that can be fixed. The time may come when you need some oxygen as a supplement. I hate the thought of this, but I know that may happen to me, too. This disease just sucks and I have always said its so unfair to our children. But I can tell you from experience that your children will NEVER think of you as a burden. My Nick was 14 when I was diagnosed, he will be 17 next week and has become my biggest supporter. Sometimes I get sad and express to him that I hate what this is doing to him and he yells at me that I am the important one, not him. He even just recently told me that he thinks growing up with all this is making him a stronger person. Your kids love you as much as you love them. Spend as much time with them and create wonderful memories for them. Doesn't matter if you can go walking with them, just sitting with them is fine. My heart breaks for you. None of this is fair. I hate cancer SO much!!! Please keep us posted as to how you are doing. Hugs - Patti B. Quote Link to comment Share on other sites More sharing options...
barbvh Posted July 16, 2009 Share Posted July 16, 2009 So sorry to hear about your severe sob. I think checking about pleural effusion is a good idea. I do not have answers, but many prayers are being said. ((Hugs)) BarbVH Quote Link to comment Share on other sites More sharing options...
hopeful? Posted July 16, 2009 Author Share Posted July 16, 2009 Thanks for all your much appreciated replies. I do see my onc once a week and was told any fluid would show up on a scan and is not. Is this as you all believe it to be? I should have also mentioned that I am on oxygen 5 liters 24/7 and still having this dificulty. Thanks also for the Dr. West Suggestion. I will also pursue that. April Quote Link to comment Share on other sites More sharing options...
RandyW Posted July 16, 2009 Share Posted July 16, 2009 cancergrace.org is our affiliate site run by the wonderful Dr West of the Swedish Institute in Seattle.. Lots of us here are also over there so You will see some familiar faces. His site can be copied and pasted int e the browser or you can go through ask the expert forum also !! Quote Link to comment Share on other sites More sharing options...
fillise Posted July 17, 2009 Share Posted July 17, 2009 April, Fluid should show up on your scans so if it isn't you probably don't have pleural effusion. Check with Dr. West at Cancergrace.org. I wonder also if some of the heat and humidity of summer has something to do with your SOB. My mom has only suffered SOB in summer. Susan Quote Link to comment Share on other sites More sharing options...
michellep Posted July 17, 2009 Share Posted July 17, 2009 I noticed that one of the chemo drugs you're taking is Gemzar. My husband also taking it and one of the side effects is indeed SOB. I too thought it was from his pleural effusion but found out it was actually the chemo itself. It's usually worse for 3-4 days following treatments but eases up after that. But I would still encourage you to ask your doc as soon as possible. Quote Link to comment Share on other sites More sharing options...
Connie B Posted July 18, 2009 Share Posted July 18, 2009 SOB can also be heart related. Chemos can be hard on the heart too. I think it's worth getting it checked out or at least call your doctor and them him or her your sob is getting worse. This is nothing to second guess. Best wishes. Quote Link to comment Share on other sites More sharing options...
Ellen in PA Posted July 20, 2009 Share Posted July 20, 2009 Hi Hopeful. One possibility that comes to mind that hasn't been mentioned is pulmonary embolisms (PEs), i.e. blood clots in the lungs. Something like 15% of lc patients develop them. That was my first symptom (sob) and I thought it was my heart (since I'd had a massive heart attack in 2001). Long story short, it was PEs and that's how I came to be dx. Definitely talk to your onc -- these things are serious. Good luck. Ellen Quote Link to comment Share on other sites More sharing options...
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