Posted on: Apr 27, 2009 08:35AM
First off, I apologize if I'm posting in the wrong forum. I have a question about symptoms but I have been dx Stage IV so I wasn't sure.... Anyway, I have been really short of breath for the last 3 weeks. I feel like I kind take a good deep breath in and like I am constantly needing to yawn - I guess to help fill my lungs? I have had these symptoms before and they were thought to be related to low hemoglobin. I know my hemoglobin was pretty low 3 weeks ago at my last treatment (10.2) so I started taking my iron again hoping that would help like it usually does. I have been taking it faithfully for 3 weeks now and still having trouble taking deep breaths.
When I was dx I had mets to one mediastinal node, I have been NED since Aug. '07 but continuing on Herceptin every 3 weeks. I'm starting to worry about mets to lungs or pleural effusions. Does anyone know what the symptoms of PE are - anything besides shortness of breath? Also, are PE caused from cancer or can they be non-cancer? Any advise is as always VERY much appreciated!!
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Apr 27, 2009 09:54AM roseg wrote:
I think they can see pleural effusions on a simple x-ray. If you had a mediastinal node perhaps it was damaged as a part of treatment and is blocking proper fluid movement in the lung area. It's often more a side effect of an abnormality than a disease in itself.
Shortness of breath is a particularly difficult side effect because it makes you anxious to not be able to catch your breath and heaven only knows you don't need anything more to be anxious about!
Even though you don't really want to find out you might have a bigger problem I'd ask the doctor about it because it really impairs the quality of your life and oftentimes getting it drained is pretty easy.
Apr 27, 2009 10:52AM anitach wrote:
Thanks so much Rose & Stefanie.... I am due for my Herceptin treatment on Thursday so I think I might go ahead today and get my blood work done to check my hemoglobin. If it is still low that will put my mind at ease some, I just can't believe it would still be so low with me taking the iron every day. I wondered if they could see a PE on xray as I just had one done in February - not sure how fast those things come on though.
Rose, you're right in that it seems the harder it is for me to get a good breath the more anxious I am becoming - so I'm sure that's not helping!
Thanks for the info and I'll keep you updated.
Apr 27, 2009 02:32PM anitach wrote:
I had my blood work done this afternoon and while my hemoglobin is only slightly higher than last time (still 10.9) I noticed that my CO2 has gone from 28 to 20. Does anyone have any experience with lab results that can tell me what the drop in that number means? Does it correlate to why I am feeling like I'm not getting enough oxygen and what could cause it? Thanks again for all the advice!
Apr 27, 2009 03:21PM FloridaLady wrote:
I'm nervous of a lung met right now also. I have shortness of breath and and controllable coughing for the past ten days. I had a CT scan Friday and waiting for results... Waiting sucks
Apr 27, 2009 03:55PM , edited Apr 27, 2009 05:40PM by Analemma
I have had terrible SOB along with my mediastinal node mets. I had chemo, which put me into NED, but still shortness of breath. I had a stress echocardiagram, which I failed. So they scheduled a catheterization. During the procedure, (my heart is fine, btw) the dr asked me why I was in, I told him sob, he said take a deep breath. I did (or tried) and he said my right diaphragm is paralyzed. Apparently the node pressing against the phrenic nerve caused it to die, and now it's gone. I think that if it had been dx earlier, it might have been saved, but no one thinks it's related, except the pulmonologist. Funny how it happened during the two months I was being treated for "asthma."
Of all the symptoms I've had with mets, this has been the most bothersome, because I can't breathe when I lie down. But they tell me I'm not eligible for oxygen because my blood oxygen reads normal.
Apr 27, 2009 05:35PM anitach wrote:
How soon will you get your results from the CT? I'll be thinking of you - please let me know what you find out.
I haven't had any cough and really the SOB feels like it always has in the past with my anemia; however, this time it is just lasting so much longer. Before, I would just start back on iron and it would go away, but this time it is not going away. The CO2 number on my blood work being low really concerns me as well.
I think that's interesting that the enlarged mediastinal node did that much damage. How big did your mediastinal get? Mine was almost 2 cm when they dx me, I'm not sure if that is very big or not. I feel the same like my body doesn't know how to take a deep breath anymore. Every once in a while I get a good lung filling breath and it feels so good, but the rest of the time I kind of feel like something is caught in my throat. Does that sound familiar at all?
Thank you both for all your help!
Apr 27, 2009 05:42PM Analemma wrote:
Anita, I just edited my post because I forgot to mention that I had a catheterization procedure to check the arteries, and that's where they found the paralyzed diaphragm. The lymph node was 2 cm, not so big, but big enough, I guess. There were a few more that lit up on PET, but not as large.
Apr 27, 2009 06:27PM anitach wrote:
I had more that lit up on PET as well, some in the intermammary and subclavicular. Only the mediastinal was outside of the breast chain.... guess that one node made me a Stage IV - that still pisses me off! Did you have your nodes biopsied?
Apr 27, 2009 07:03PM Analemma wrote:
Yeah, they did a bronchoscopy and got cells from the node that was pushing into the trachea.
Apr 27, 2009 07:22PM Marybe wrote:
I went through a period where I was very short of breath and was huffing and puffing doing steps and found it difficult to do normal tasks without sort of gasping. I went to my GP and he sent me for pulmonary function tests and a chest xray. They called me at work and told me to go that night for a CAT scan and then admitted me through the emergency room thinking it was a PE. (I say thinking it was a PE because it actually turned out to be another problem) I remember asking why are you getting me in before those people who were here before me and was told they took you according to the severity of your problem. You don't want to mess with a PE. I would call your onco and tell him your symptoms....the only reason I went to my GP was because I didn't think it had anything to do with my cancer treatments. I have been on coumadin ever since and they tell me I will always be on it because I am prone to blood clots. Another friend of mine had shotness of breath and a cough she could not shake and her diagnosis was pneumonia which several rounds of antibiotics cleared up. Good luck in finding out what is causing your problem.......but do be sure to have it checked out. I do by the way have mets in my left lung and that effects my breathing if I over-exert, but it's pretty much under control..
Apr 27, 2009 09:20PM donnajm wrote:
I have mets to my right lung and it has not caused in sob in my at all. SOB can be related to so many things, heart, lungs, etc... How are your potassium levels? Anemia and low potassium caused sob in me. We are all so different. Have your dr.check it out so you don't waste precious energy worrying. Let us know what happens! You'll be in my prayers.
Apr 28, 2009 04:55AM gcpommom wrote:
I got a PE last month during chemo. I didn't notice any bad SOB, but I have asthma and am alway sob to some point. I did have pain, which is what sent me to the ER in the first place. The pain was like when you walk too fast and get a 'stitch' in your side, but it was higher up, under the ribs on the left side. I did get SOB within the weeks after I was dx with the PE, one episode sent me to the ER. So you should probably check with your doctor. Although, in all honesty, my onc wouldn't have been worried about my pain, since they tend to downplay everything. When I called and explained my symptoms, they didn't think it was anything, and the nurse sounded surprised that I was bothering to go to the ER. After the dx of PE, my onc was full of questions as to how I knew something was going on. In all honesty, I thought something was wrong with my spleen based on my symptoms, never even thought of a PE.
Apr 28, 2009 06:31AM , edited Apr 28, 2009 09:59AM by virginiamom
Have you had any xrays of ct scans lately. I have lung mets and a mediastinal node. I was having really bad SOB and coughing. The doctor ordered xrays, ct scans and an MRI and found my lung mets had grown despite being on Taxol for 3 treatments.
He switched me to Doxil and although I have had only one treatment, my SOB and coughing is almost gone. I don't know if it is a coincidence or not. I have also slowed down. I have been on medical leave and have been relaxing. Just walking will cause me SOB and coughing so I have been really careful. After a few weeks of the coughing, I started to have horrible pain under my breasts and then all the way in my back. I don't mean to scare you, but you should call your doctor right away.
Hope this helps. ((HUGS))
Apr 28, 2009 08:27AM anitach wrote:
Okay, I'm convinced now. Thank you all so much for the encouraging words..... I'm not feeling any better today so I'm off to the Dr. at 11:00. I'll be back with an update as soon as I can. Thanks to all my sisters with the helpful advice!
Apr 28, 2009 02:04PM FloridaLady wrote:
Is there anything you can do for the cough if you have mets? I don't know if I can wait four weeks of rads and than get back in chemo? I coughing so bad I don't know how I'm going to hold still for rads and hypthermia starting tomorrow. I have almost two hours to not cough? I don't think so.
Apr 28, 2009 03:30PM karen4u wrote:
I have had SOB for the past 2 months and just found out this past week it is CHF. I had this previously from the Adriamycin and now I assume it is from the Tykerb. Appointment with Onc on Thurs to see what future tx is.
Apr 28, 2009 09:16PM Skyrat wrote:
Anita - have you had a MUGA scan? I believe that Herceptin, like everything else thrown at us, can cause heart damage. When I was on my first round of chemo, I experienced SOB to the point of being able to only walk a few steps before having to try to catch my breath. A MUGA scan showed my heart function had gone from 63% to 47%, so chemo was stopped immediately. After a number of months, the heart had regenerated back to 54% function and the symptoms had eased considerably. Just something to chew on. Hugs.
Apr 29, 2009 06:28AM anitach wrote:
I could only get in to see my GP's nurse practitioner yesterday. She did my pulse ox? (is that the one they measure on your finger?) and it was 99% so that was good. She still feels that the SOB is a result of the anemia and maybe just another side effect of the Herceptin. She did do a chest xray just to make me feel better though. I still have the SOB today but I see my onc tomorrow so maybe by then they will give me more info. Thanks everyone for your thoughts and advice!
Apr 29, 2009 10:49AM , edited Apr 29, 2009 10:54AM by karen4u
CHF is congested heart failure but don't be too alarmed it is treatable and if you do have it, stopping the herceptin for a period of time and heart meds can bring your ejection fraction back up. Mine was 64% when I started the Tykerb and now it has dropped to 30%. I am currently on chemo break so I'm sure I will not be starting the Tykerb back for a while...will find out for sure tomorrow. I've been having SOB for about 2 months and had been to my PCP numerous times with no dx. Finally found it while I was in the hospital for an ablation, nurses thought it was an embolism at first but an Echo and BNP blood test revealed CHF. I would contact your onc and let him/her know about your SOB and ask if you can have a repeat Muga. May not be it, but it is a starting point. Good luck.
Also, my pulsox was good and this is a side effect of herceptin. I don't mean to knock your NP, but my experience with PCPs are they are not as knowledgeable of the side effects of these chemo drugs we are taking.
Apr 29, 2009 01:43PM anitach wrote:
Thanks for the info. I did have an echo done a few weeks ago and although I don't have the official results the tech that my EF still looked good. It has remained at 60-65% throughout treatment. For some reason the MUGA's have never worked right for me so I just get the echo every 3-4 months.
Any news on your CT? I've been thinking of you.
Apr 29, 2009 01:56PM FloridaLady wrote:
Hi, Just got back and did not find out much. This is a new clinic and doctor and he said he had trouble finding out what is old rads damage and possible new disease...so the scans are still out being read. (I hope there is not a need for a biopsy...please. I did get some steroids today and a heavy duty cough syrup. He does feel it could be Pleural effusion....I don't think this is good. He did say I had very little fluid in my lungs. I hope this means that is some way to control this. I notice I don't cough as much if I lay down and sure this is not good because of fluid build up. My whole back hurts from coughing right now. It looks like I may have to do Navelbine and Hyperthermia/radiation all at the same time. This has been a hell of a week. One of our employee's showed up Monday morning wanting to kill himself and it went down hill from there.