In 2008 I began coughing and was treated with enough steroids and asthma medicines to sink a ship. Nothing ever seemed to work. Before 2008 I did not have Asthma. Then 2/ 2011, hello CML. I've been coughing for 3 years now. It seems much worse since leukemia and Sprycel. My question is, does anyone think that I could have had CML since 2008 when the coughing began. 2nd: Has anyone else had breathing issues such as Asthma? Since I'm on Sprycel and a clinical study at MD Anderson, steroids are not allowed. I was allowed 2 weeks to take steroids but my blood pressure shot up too high. I'm sure there is already a thread here somewhere about this, but "oh well" Thanking yall in advance.
Asthma worse since CML
Posted 23 October 2011 - 06:05 PM
Hi: Sprycel does cause a lot of edema in the lungs. I know someone who is not on the discussions here, who is on Sprycel. She has so much fluid in her voicebox since she went on the Sprycel. I have trouble understanding her on the phone when we talk. Is it really Asthma would be my question?
I was told I had Asthma many years ago, before my CML. Turns out I do have very bad sinus problems with a constant drip down into my throat and chest, and now they just say its COPD from the years that I was a smoker. I do have a cough all the time, but I am on Gleevec.
That is another good question for anyone on Gleevec, if they have noticed a cough since they went on Gleevec.
Posted 23 October 2011 - 08:16 PM
That pre-diagnosis cough which many of us had is due to a high blood platelet count. The pre-platelet cells (megakaryocytes) go to the lungs to be broken apart into fragments and become the platelets. The excessive numbers of megakaryocyte cells cause a CML cough. This is often a symptom leading up to the diagnosis for CML.
As for your current symptoms, it could be several things, most of which are unrelated to CML. But Sprycel can cause fluid build-up either around the lungs (pleural edema) or in the air sacs inside the lungs.
Posted 24 October 2011 - 11:31 AM
I'm not convinced that it is Asthma. It all began in 2008 and after cat scans and pet scans, I was told I may have lymphoma. Nodes were removed surgically from my chest and DX as sarcoid. But not active. UN Lucky me, my vocal cords were damaged from that surgery and I couldn't talk for months. I had to have another surgery to repair my vocal cords. By this time I was done with going to Dr.s! But Leukemia came along and here I am. I have seen ENT's, allergist, cardiologist regarding this cough. I have no alleries and It is not sinus. At his point the pulmonologist is at a loss. He explains my issue as multi problems. Inflammation being the main cause as I do have some autoimmune issues. I have never smoked. I can deal with the cough but it drives my family nuts. I often throw up after eating so I never eat in public. Food is overrated anyway's.
Posted 24 October 2011 - 02:39 PM
Hi : So sorry you went through all of this, and I do not think you have Asthma either. I was told by a ENT doctor that I had a lot of allergies, but not worth putting me through all the testing it requires to find each allergy. You said you can deal with the cough. My cough is only at night, when I am tryin to sleep. That is why I am pretty sure its the drip down the back of my throat all night long. Hope you get some relief or some definite answers at least.
Posted 24 October 2011 - 03:18 PM
Well, my allergies are going nuts of late, but I think that's because we turned the heat on, and that stirs up dust in the ventilation system. I am planning on getting it cleaned. Probably did it 5 yrs ago, so we are definitely due now. I know it's the dust issue, since my dd's asthma has been acting up, too. I had to up her meds because of it.
If the issue is inflammation, ask if you can take singulair. It's a leuketriene inhibitor (LTD4 - if I remember correctly), and it is not a steroid. I take it every day, along with allergy meds, and I would be miserable without them. (No problems with Gleevec, not sure about sprycel.) LTD4 inhibitors address a different type of inflammation in the lungs - from a long-term response caused by leukotrienes - not the short-term response you get from histamine. Both long-term and short-term inflammation are at play with asthma.
You've probably heard this from ENT's, too, but sinus issues CAN cause asthma. I know, you said it's not sinus, just keep that link in mind.
Not sure if you've been allergy-tested recently, but you can develop allergies at just about any time in life. If you haven't been tested in awhile, I'd get retested.
Anyway, check out the singulair. If it doesn't help you, then it could mean inflammation is not the problem.
Posted 24 October 2011 - 06:50 PM
Hello everyone,I have ET and on hydra(last 3 yrs.)in the last few months I have started being out of breath and went to my PC,had xray(it was clear) was sent to lung Dr. and he had a CT done to see if I had blood clots there.Was told that it was fine,but there was a small spot on my right lung.He thought it could be scar tissue but never injured myself there.So he put me on inhaler and wants to see me again in 4 months.Your question about asthma caught my eye and had to post.I have had a cough for ever,but in the last 10 months it is constantly epically at night.The Dr. never said I had asthma but he is treating me like I have it.
Trey,your post kinda scared me about the cml.
Posted 24 October 2011 - 06:58 PM
Someone with ET should be monitored for any sign of rising platelets or WBC. Otherwise, don't worry about it.
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