Minh

Hi BridgeO They sent me two different swallow tests and both tests confirmed no abnormality. They recommended me to chew foods carefully and eat 8 small meals per day instead of regular 3 meals. Every time I swallow, it seems like foods go down slowly and if I have slight cough the foods would go back up which can cause vomiting and choking. Most of the time I have to double swallow or take a sip of water. I am not sure I can gain any weight if my eating is like this. I cannot keep losing weight. They also recommended belly breathing which I religiously follow but it doesn’t seem to help. Funny thing is I can walk on treadmill for 15 minutes without difficulties. But if I walk from living room to sidewalk in front of my house, I would get very winded, whole body weakness and stiff chest, stomach, and neck. Sometimes I feel like high pressure builds up in my head every time I gasp for air and my head will explode. This shortness of breath is really difficult to deal with. I need more tips how to eat and increase weight with sob issue.

Thank you all for suggestions. I have tried everything you have recommended. I also talked to dietician multiple times for help. My main problem is shortness of breath that leads to other problems such as eating, swallowing, potential choking, and fatigue. They told me to learn belly breathing which I tried and it doesn’t help. When I eat I have to belly breath and swallow at the same time which can potentially cause choking. I have to swallow quickly and return to breathing. It very difficult for me to eat with shortness of breath. Usually I get tired quickly when eating meal. So I tend to hurry up and eat as fast as I can before I have to take a 15 minute break. One meal can take up 1 1/2 hour. Are there anyone out there that have same problem like me? Shortness of breath that causes eating problem. What should I do? Doctors keep telling to learn deep belly breathing which I tried and did not help me at all. Help!

Dear warriors, I have been in and of rehab for multiple issues. I went to ER May 2023 for heart racing issue. My heart rate went up to 150 bpm. CT scan of the lung was completed and no blood clots found. They found nothing after the whole day. They gave me some IV beta blocker and then sent me home. No other obvious issues except for total exhaustion. Then in Sep 2023, I got pneumonia and went to ER and stayed for 3 days. My shortness of breath increased 10x. Prior to pneumonia I was able to walk around inside the house. After pneumonia and can’t even walk to the garage without gasping for air. When I eat I get really tired and I have to eat multiple meals to keep up with daily calories. I have to cancel my MD Anderson followup scan because I don’t think I can walk through airport. I have questions for all. How can I regain all the weights I lost? Because I have to take breaks during meal and I lost appetite. I have been drinking all kind of weight gain shakes. I used to love McDonald French fries. Now it doesn’t taste good anymore. Same thing with Big Macs and other fast foods I like. My doctors want me to gain 10lbs. Please give me a list of foods, snacks, and drinks to consume. I would eat anything to gain 10 lbs. Thank you!

Yes I have been seeing oncologist every 3 months or so. He referred me to pain management. I just got a call from them today and they will try to get me in soon within couple weeks or so. For bloody wipes, it happens about once every two weeks. I was told by PCP to eat more fibers. Let’s see in couple of weeks if it goes away.

Thank you all for info. and support. For some reasons, waiting list for dr. appointment is very long. I had to wait for 10 months for my pulmonary rehab. I have to wait until Mar/2024 to see a pain management doctor. And cardiologist will take 6 months. I will see my PCP for bloody wipes and see what to next. My next worry is 4 cm cyst on the kidney. From the previous CT scan, they told me it’s benign. It seems like I am on the waiting list for something to happen…

Happy Easter! I have just finished both home therapy and outpatient pulmonary therapy. My shortness of breath condition is somewhat improved. Not to the level I expected, but I take what can get. Now I can walk up to 30 minutes and take shower without a chair. I can do some light choirs such as cooking, laundry, and dishes. I still have shortness of breath with exertion, chest pain, lower back pain, and lightheaded. The lower back pain is getting worse, and doctors could not determine the cause. And now I started getting random infrequent (once a week) bright red wipes after bowel movement (with no pain). Not sure why, but I am thinking recurrence somewhere, a scary thought. Can’t wait until my next surveillance CT scan in July. I am very worry. Does any one here know if CT scan can see tumors in lower back bone and GI tracts? Could I have metastatic tumors somewhere in my back and my colon? Welcome any inputs.

Another three months have gone by. My struggle to recover from lobectomy complication continues. Now I can walk about 20 minutes without running out of breath which is great improvement. I used to only able to walk for 5 minutes. My arms range of motion and strength also have improved. I can workout with 3lb dumbbell for about 5 minutes. The chest and back pain is still there, but the medications seem to help. Overall my conditions have improved in the right direction. I have completed in home therapy and now scheduled to have pulmonary rehab in outpatient center. But I have to wait for patient backlog to clear out due to recent respiratory wave. It could take another month or two. I pray for everyone here to get well! Cancer really sucks!

One of my oncologists told me that for smokers or former smokers, it’s generally true that nodules in upper right lung lobe are more likely to be cancerous. The reason is when you smoke, the right lung will take in more smoke volume than the left lung because it’s bigger. And most of carcinogen smoke trapped in the lung would tend to float from bottom to the top of the lung. So over years of smoking, carcinogen particles tend to collect themselves on the top lobe of the right lung which likely lead to cancer. This is one of the reasons right lung cancer is slightly more prevalent than left lung cancer. Smoke usually floats from low to high location. Again my oncologist told me that the shape and consolidation tumor ratio (CTR) is more important than size. If the nodule shape is spiculated and has more solid component, then it has high probability of being cancer. If the tumor has round shape and no solid component, it is less likely to be cancerous. I had a 16mm nodule and he claimed it’s small. After the RLL lobectomy to remove this nodule, I still have 2 nodules with sizes of 5mm and 6mm which he said to wait and see. He won’t do anything until they consistently grow over 7mm.

My nodule was incidentally found in 2018 through a heart scan. At the time it was about 9mm. They told me it was an infection and not to worry about it. Three years later in 2021, the nodule grew to 18mm and they biopsied it and found out it was cancer. So, when in doubt, go for CT scan. Insist to have CT scan and biopsy any nodules found. Don’t let them tell you it is infection or inflammation without verification.

Here is my latest status after 6 months since my last lung surgery, my total lung capacity (TLC) has returned to 63% which still considered as lung severe restriction. It needs to return above 70% to be considered as normal. I still have shortness of breath when walking less than 500 feet or 5 minutes or less. The chest pain is still there even I am taking pain medications. Now I have back pain at night that keeps me from getting a good sleep. It usually peaks between 4:00am and 5:00am and wakes me up.

I just came back from cardiologist appointment. I had an echocardiogram done. The result is my mechanical heart valve is still functioning properly. There no vegetation found on valve surface. He suggested that all my symptoms are results of lung surgery complications. I will see pulmonologist soon to diagnose my symptoms. Ideally I should see my surgeon that operated on me, but he has transferred out to different hospital and no longer able to see patients.

I just had my first 6-month scan after lobectomy for a right lung tumor. There appeared to be a 2.3cm tumor on the left lung. But it does not appear to be active. So I guess that is good news. I still have difficulty breathing, shortness of breath, chest pains, and very fatigue and depression. It’s been 6 months for lobectomy and 3 months for lung trapped surgery. I am not sure when I will return to functional. I can’t do much without running out of breath quickly. Surgeon told me my condition could become permanent, and have to wait and see. Wish everyone stays well!

I remember reading somewhere while back about lung cancer recurrence probabilities in relation to nodule sizes after complete lobectomy with clear margin and no node involvements. 0cm < Size < 1cm has 6% recurrence 1cm < Size < 2cm has 16% recurrence 2cm < Size < 3cm has 32% recurrence With your nodule size of 4.7cm, I would guess the recurrence chance is much higher than 32%. If I have to make this decision, I would do both adjuvant chemo and targeted therapy to improve my chances. These two treatments could kill off all of microscopic cancer cells floating in your body that can not be detected by any tests or current testing technologies. If chemo side effects become too dangerous, doctor might spacing out your sessions or switch medication. Reducing recurrence chance of 25% to 10% is very significant in my view. Did you have biomarker done to find out about your mutation??? I don’t think they will give you immunotherapy until they know your mutation. Typically they only offer immunotherapy when there is no targeted therapy that will work for your mutation. I have read so many stories that patients wished they should have taken adjuvant chemo when doctor recommended and offered them. Take care!

After 10 weeks of second lung surgery, my shortness of breath and chest pain continue. Infectious disease doctor said I had empyema because of bacteria infection of the lung. After 6 weeks of IV antibiotic treatment, they are still not sure if the bacteria is completely dead. But they hope the bacteria has not infected my blood because it could cause serious heart damage to my mechanical aortic heart valve that was replaced last year. The bacteria is known to be indolent meaning it is very slow growth. So blood testing may not detect it immediately. It may take between 6 months to 12 months for it to show up in the blood test if the infection still there. If it has infected my blood, I will need to have another aortic valve replacement surgery which surgeon does not liken. I still have a lot of trouble breathing and chest pain. I mostly bedridden because when I sit up I can not get full breath. Only laying down will give me some relief. Surgeon said my condition may become permanent. But have to wait 6 to 8 months to find out. Meanwhile, they kicked me off disability insurance. Trying to figure out how to support my family with two teenagers with no incomes. Savings have been drastically drained since diagnosed last year.

Today is my last day on antibiotics. I have been on it for 6 weeks since surgery. I still have shortness of breath. Can’t walk for 5 minutes without running of breath. Even sitting up is tired. Appetite is terrible, but hoping it will be better after antibiotics treatment. I will have a followup with dr. in 10 days. Hopefully no more surgery is required. Best of luck to all. Stay healthy!!!

So I was discharged from hospital last week with chest tube and picc line in arm. Chest tube was removed after i came home for about a week. I still have shortness of breath, but they said it should get better in about 6-10 weeks. I am cautiously hopeful. The picc line in my arm will not be removed for 4-8 weeks depends on how well I recover from the bacteria infection. If not, another extensive lung surgery is required to clean out the infection again. My final diagnosis is empyema without fisstula. Infection bacteria is cutibacteria infected lung. Treatment is a regime of Unasyn antibiotic injects directly into blood stream for 6-10 weeks.

Not sure when they will discharge me but I am still in recovery room in hospital for my lung surgery for trapped lung 5 days ago on Mar-02-2022. They found bacteria infection in my right lung that was selected for lobectomy back in Nov-17-2021. They put me on antibiotics for 8-12 weeks and hope that will fix it. I will go home with all kind of tubings in my chest and arm. As of now I still have same symptoms of shortness of breath. But they told me I will get better if the bacteria is eradicated in 2-3 months. They don’t even want to discuss about what if the bacteria still there.

Thank you Bridget and Tom for your support and encouragement. Decortication is the procedure I will get tomorrow. Surgeon said 50/50 chance it will fix my trapped lung and hydropneumothorax problems. If this doesn’t fix it, then surgeon recommends another surgery called Clagett thoracotomy which requires to remove ribs. I am just totally freaked out thinking about this. I hope the decortication fixes the problems. As of now, sob is really causing me a lot of distress. Even taking a shower is very tired. I have to get shower done in 10 minutes or I would be exhausted. Same thing with eating, I can not finish a meal in one sitting without being exhausted. I have to lay down and take a break every couple of bites. Quality of life has gone to near zero in 7 weeks since beginning of the year.

After three months of RLL lobectomy, now I am diagnosed with trapped lung and required another lung surgery to hopefully fix it. Surgeon said successful rate is 50/50. Surgery is scheduled for next week 02-Mar-2022. I have had 3 major chest surgeries in the last 10 months. As of now I am more likely to die of cancer treatments than cancer itself. I have gotten on this treatment treadmill and may never get off from it!

I am still in process of diagnosing trapped lung. It will take another couple weeks for pulmonologist to get all the tests done. At this time since my mutation is egfr deletion 19, my oncologist offered me Targrisso even though I am stage 1a? Not sure whether I should take it because typically adjuvant therapy is only offered to stage 1b-2. What a dilemma! If I don’t take it I might regret it later when it comes back. And if I take it, cancer will mutate and become resistant to Targrisso which take away my best available drug for egfr deletion 19.

Hi Carla, I am glad you are doing well and thank you for sharing your experience. Here is a quick summary of my situation. Initially I had 3 Thoracentesis for my left lung prior to my lower right lobe lobectomy in November 17, 2012. I was doing well during the lobectomy recovery until after Christmas when I felt shortness of breath and had 7 days of fevers. I then checked myself into ER where they found out I had pleural effusion and Covid 19 infection. They had to use pta/dnase to break up the loculated liquid and then drained it (1.2 liter). They did not give me and treatment for Covid 19 since I was vaccinated with booster. So the fluid was drained and they sent me home 7 days later on Jan,13,2022 (about 2 weeks ago). I came home and followed up with my pulmonologist two days ago (Jan,27,2022). He had me took a X-ray which showed liquid had reaccumulated again in my right lung. His diagnosis is I had a trapped lung (right lung that had surgery) which most likely requires full open chest surgery again. Even with the surgery, it may not fix the problem and the risk of major complications is very high. I am not sure if I can survive another surgery so soon after the recent lobectomy. My prognosis doesn’t look good. At this time I have very bad shortness of breath. I can’t walk 50 feet without taking 10 minutes break by laying down. I am waiting to hear back from my pulmonologist as to what other treatment options available beside surgery. I try to avoid surgery if possible. But I may not have other choices.

Thank you Lou, Just came out from pulmonologist office. He said I might have trapped lung complication because of recent lobectomy which required surgery to repair. And the X-ray I just had confirmed the trapped lung diagnosis. I don’t like it. I just had lobectomy. I don’t want another lung surgery to repair lobectomy complication. When will it end? Surgery to repair another surgery’s complication. I am not sure if I can survive this many surgeries in a few months.

Thank you all for listening to my whining! I have been on sick leave for almost a year. If I don’t go back to work soon (assuming my job is still there) I will lose my health insurance, then I will have no more dr. appointments. I have pulmonologist appointment on Thursday. Not sure what tests he will put me through. Hopefully there isn’t much damage to the lungs due to covid 19 and pleural effusion and I can recover quickly enough to return to work to keep my health insurance. As of now I still have shortness of breath when I walk 20 feet or more.

Got a message from ER Dr that my potassium level had been very high during my stay in the hospital. As they explained high level potassium can lead to dangerous heart conditions such as heart attack and stroke. They were able to temporarily bring it back into range. But they suspended my blood pressure medication as they suspected this medication caused high potassium. But they are still guessing because I never have this issue prior to admittance to ER. So now I have to go find out why my potassium goes up. Here we go, more doctor appointments again! I have at least one dr. appointment every week since ever.

Thanks Lou, My resting heart rate is still about 105-110bpm and I am trying not to move around to keep it down. I am trying to get to see my cardiologist ASAP. It’s not easy because for some reasons my cardiologist group is very busy. I am only allowed to see him twice in a year. My next appointment is in June but I try to move it up. ER dr said it could be related to my prior heart surgery or covid 19 which could go away in couple of weeks or become permanent which required cardioversion. I just wonder how long did it take for your heart rate to go back to normal?