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scared- getting more out of breath by the day

lisa42's picture
lisa42
Posts: 3663
Joined: Jul 2008

I have stage IV rectal cancer, which has metastasized to both my liver and lungs. Currently, my worst problem is in my lungs. I have "used up" all chemos and stopped chemo in October (after being hospitalized with pneumonia and seeing on a scan that tumors grew some while on chemo). My onc said all the chemo I've had (close to 4-1/2 yrs worth) was starting to shut down my immune system. I am taking the nutritional approach now (gone vegan, am juicing, and am taking another nutritional treatment).

Anyhow, I find myself gasping for air after doing very simple tasks (such as taking the wet laundry out of the washer & putting it into the dryer, as one example). Going up the stairs at my house makes my heart pound and has me sitting at the top of the stairs trying to catch my breath.
I'm just 45, so it's not like I'm a feeble old woman. I guess feeble, yes, but not old.

I know it's the tumors doing this to me & I am hoping that maybe I can see an oncology pulmonologist to have him/her look at the CD of my scan from last week to see if there is a particular tumor(s) that is pressing against my airway or something & maybe it could be radiated for symptom relief. I've never been a candidate for lung surgery or lung radiation because I have what they call "innumerable subcentimeter nodules" in all parts of both lungs- there's just too many to address. In addition to the innumerable subcentimeter nodules, I have a couple that are around a cm, one that is approx 2-1/2 cm & another that is 3-1/2 cm.

Any advice on procedures, drugs, alternatives, or whatever to help my cough and the breathlessness would be appreciated. I do take cough/cold medicine to help with all the congestion and coughing, and I also use a nebulizer with albuterol (I have mild asthma). It helps the cough some, but hasn't seemed to help the breathlessness at all.

Lisa

z's picture
z
Posts: 1251
Joined: May 2009

Lisa, Im so sorry your experiencing the shortness of breath. Please go to the pulmonologist to see what they can do to help. Do you think having oxygen would help? I hope you will get some answers. Could they just rfa the larger tumors, I don't see why not, or wedge resection. Phil and Impactzone have those procedures every year. Impactzone just had vats. I hope you will go to the dr soon and maybe like what you said they could use the radiation. I have you in my thoughts and prayers. Lori

lekkerone
Posts: 199
Joined: Jan 2011

My heart goes out to you. You have really had a rough time. I have COPD and use spiriva and symbicort. Both help my breathing considerably so that my only reminder of my condition is when I forget and try to run up stairs. Perhaps your doctor could try you on one or both of these.
I wish you well, Diane

grannylove
Posts: 183
Joined: Apr 2011

I am so sorry you are having to deal with so many issues concerning this dreaded disease. I am hoping that someone with similar dx will be able to address your concerns. I would like to just offer some suggestions since I have not walked in your shoes.....I know you have stated that you have gone to a nutritional approach but I was wondering if you are taking any natural supplements? Sometimes supplements, such as COQ10, can give you heart palpitations expecially if you are also taking other healthy heart supplements. Are you seeing a cancer nutritionist or a homeopathic for advice on your tx plan? They can help tremendously finding a good balance for you. I pray you get some relief soon, as you deserve it! Stay strong Lisa and keep up the fight. Positive thoughts and prayers! Cheryl

cabbott
Posts: 1046
Joined: Aug 2006

Sometimes I feel like I should hve gone to med school so I could understand what to do when I am sick! An oncology pulmonologist may certainly be able to tell you if radiation or chemo might help with your breathing. However, a pulmonologist is a specialist in breathing. The onco pulmonologist is a cancer specialist. I saw an onco. pulmonologist early in my treatment and they dismissed me from seeing them as I wasn't really advanced enough to need chemo. I thought that meant that nothing could be done about my breathing problems so I did nothing. So maybe they would help you. . . then again. . . It took me another two years of coughing before I finally understood that the pulmonologist (different specialist than the onco. pulmonologist) could help me with coughing. The pulmonologist helped in lots of ways. They had me evaluated with a battery of tests to determine my oxygen level and possible causes--besides just the cancer and surgery. Then they worked at finding a medical solution to my coughing. Though I have lung cancer, apparently I also have some asthma and maybe some COPD, probably some allergies. When things are really messed up, they use a combination of prednisone, antibiotics, corta-steroid nasal sprays and inhalers to get me cough free. When things are better, the nasal sprays and inhaler are my main meds. I don't do the over-the-counter meds unless the doctor okays the mix because of possible side effects. Sometimes he uses them, sometimes he points out that the meds he prescribes are better. I especially like the new nasal sprays that aren't addictive and stop the sinus symptoms better than the over the counter stuff that messed with my head.

Sometimes I notice folks with more lung problems than I currently have. The literature and conversations I hear at the pulmonologist's office gives me some ideas of things that might help. Some folks breath better during the day if they breath better at night. The pulmonologist also specializes in sleep disorders and offers many sorts of machines that deliver warmed, moist air. I think some folks are on oxygen with those machines. Others get regular air but with a mask that helps the air go in. Other folks need to be on oxygen part or all of the day. It is not unusual for folks in my town to go grocery shopping, pick up children from school, or even go to the concerts while on their portable oxygen machine. It might be a hassle, but it is better than keeling over from lack of oxygen.

Sometimes a general physical can find a different reason for breathlessness. Just because you have cancer doesn't mean you can't have another problem, not that anyone needs other problems. But another friend of mine found that she had a fluid build-up that affected her heart and she was feeling breathless and winded. The doctor put her on some diuretics (oops I'm not sure I can spell, but maybe you know what I mean) and though it sent her to the bathroom for a while, her fluid problem and her breathing problem cleared up. Now she is much better, though she will have to see the cardiologist to keep checking on her heart. Another doctor: Ugh!

So talk with your oncology pulmonologist and ask him or her what else they think you should check out. If they are clueless, consider your regular doctor for a checkup and a pulmonologist for another opinion. They may have some ways to maximize your quality of life. Good luck!

plh4gail's picture
plh4gail
Posts: 1232
Joined: Oct 2010

Lisa, I wish I had some advise on this. I hope something helps you feel better.

Love your buddy, Gail

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