One day at a time.

[SOBALSO]

I haven't posted for awhile but I have been reading other posts. My one MRI and other test found no sign of cancer for which I am grateful. It is now 17 months since my lobectomy and 11 months since the completion of my chemotherapy. Friends ask me if I think about the cancer and the answer is NO. So why am I here? Because I am worse off now than I was prior to surgery. I have not recovered my strength and the shortness of breath is getting worse. I have undergone two heart caths to rule out heart issues and I am about to have my third to rule out pulmonary hypertension. My guess is that the COPD is now worsening and I have to face the fact that it's my new normal and this is hard for me to swallow. My pulmonologist wants to place me on a course of low dose testosterone medication to help me with regaining muscle but my other doctors advise me not to do. I am getting tired of visiting specialists period. Has anyone had an outcome similar to mine and has any Male of my age (79) tried the testosterone therapy .

I look forward to all comments

Thanks

Vince

[Denzie Moderator Volunteer]

Have you had pulmonary rehabilitation? Insist on establishing a new base PFT and request the rehab. They help strengthen the muscles that support breathing, improve your endurance and teach you strategies that will help you get the most out of each breath.

Typically they don’t offer this to lung cancer patients unless they insist.

[SOBALSO in reply to Denzie]

Thank you for the advice. I will call my pulmonologist and request as soon as I get off the computer.

[JanetteR57]

Sorry to hear of your continued breathlessness. Were you given an incentivisation spirometer? has your lung function been checked since your surgery? I initially recovered well after mine in Dec 2010 and returned to swimming 3 months later but still was breathless with stairs. In recent years I've had a number of severe chest infections including pneumonia and after a lot of tests/diagnostics a couple of years ago finally told my breathing is dysfunctional. This despite swimming for hours - but for normal life it can interfere especially post infection. However in jan 2019 I was isolated in hospital and told I had RSV and was really weak and breathless afterwards and couldn't believe how debilitating it was... I was unable to return to anything remotely near my normal yet was told it was the surgery despite that being many years earlier. A chest x-ray revealed an enlarged heart and was then sent for echocardiogram but nothing too untoward on that. Eventually I tried to figure out what else had happened other than the virus and realised they'd changed an inhaler when in there and I'd been taking it twice a day ever since which by then was almost 5 months. I looked at the side effects and found breathlessness was one, so told my GP that I was not going to take it for the next 3 weeks (it was a preventer (fost air) and I still had the reliever if I needed it) as that would be when I next saw the respiratory consultant. He agreed and by the time I saw the consultant saw a huge improvement in my breathlessness. He changed it back to the previous one (Symbicort) and since then my breathing has continued to improve. I've seen a respiratory physio twice since (today's appointment changed to a telephone call! which will be interesting as she usually observes my breathing when walking on the level and upstairs) but can report a marked improvement. hope you get sorted soon. My muscle tone and breathing improved considerably with swimming so can't wait for our pools to open in the Uk (next weekend for England) as the water supports the weight so moving about is easier and to regulate breathing. good luck.

[SOBALSO in reply to JanetteR57]

After the operation I thought I was on my way to recovery then the chemo put me down for months. Post recovery from chemo I started cart golfing again about 36 holes per week but my breathing on the course was always labored. I tried to push through it but it never got better. After about six weeks of golfing I had to quit because my spinal stenosis started to act up. I've tried oxygen, inhalers, spirometers, walking, swimming, but nothing seems to work. They have ruled out my heart being a problem except for pulmonary hypertension which I am scheduled for the test next month.

I am thrilled to hear that you are improving with the Symbicort usage. That is one inhaler that they have not put me on and I will be sure to mention that to my pulmonologist on my next visit. Thank you for sharing and I hope you continue with your improvement.

[lovey100 in reply to SOBALSO]

What about having a lobectomey 2017 right upper and Middle lobe removed, chemo and radiation and now no treatment since keytruda kept me payed out so now nothing for 2 months and the back of my thighs hurt when I walk??? Must’ve joint pain?? Is that arthritis die to keytruda??? Had my 90 day scan Wednesday but no one has called me so I’m hoping it’s a clean scan but my legs hurt, I don’t do pain meds Motrin only