My name is Deana and Iām 48 and was diagnosed with stage 3 NSCLC in 2015. It took 11 months and 4 stays in the hospital with ābronchitisā for the doctors to finally find the tumor the size of a lemon that was crushing my right bronchial tube. Once found I immediately began looking for a treatment hospital. It took 16 days in the hospital but I eventually found the John Theurer Cancer Center in Hackensack NJ and they took me up by ambulance. My treatment started that night and I went through 10 rounds of chemo and 45 rads. I then was enrolled in a double blind clinical trial and received infusions of an immunotherapy drug (pretty sure it wasnāt placebo because I had all the neg side effects lol) and my tumor shrunk to just 2cms. I know that seems big for a tumor still but so much better than the original š lemon. Iāve been traveling to Hackensack every couple of months for scans and so far everything is stable. Hereās where my problem comes in. The cancer is stable but Iām constantly fatigued 3 years after diagnosis. I also keep getting sick. Bronchitis (now diagnosed with advanced copd) and pneumonia are pretty common for me as is wide spread joint pain and fatigue. Iām currently using cbd oil and occasionally eating medical marijuana edibles that I make myself (I have a MM card). I was also thrown into full blown menopause after the chemo so Iām on Premarin as well for the hot flashes and other symptoms and Dexilant for severe GERD and Barrettās esophagus (thank you radiation š). What I need is some advice on how to get rid of the fatigue. Most days I donāt want to leave the house because Iām so exhausted from just simple household chores. I travel a couple of times a year to either Florida or Mexico just to get away and relax but I donāt do any sightseeing because Iām too tired. Itās not even the āI want to sleepā tired. Sleep doesnāt help the fatigue. Itās dog tired down to my bones. Any suggestions would be so helpful. I mean whatās the sense of surviving this cancer if Iām too exhausted to do anything? I want my life back. Thanks! Be well everyone.
Written by
ynkefan08753
To view profiles and participate in discussions please or .
I had the same problem you did and was diagnosed with radiation pneumonitis. I was originally diagnosed with stage 3b NSCLC in September 2015. I had radiation and chemo which ended February 2016. I was treated with antibiotics and steroids until January 2017 when I was told there was nothing else could be done. I was told from day one that surgery was not an option because I also have cardiomyopathy. The cancer was in the left lung, the bronchial tube and lymph nodes.
In February 2017, I was referred to a surgeon at Johns Hopkins and he was willing to do the surgery.
On February 27, 2017, my left lung and bronchial tube were surgically removed. He cut the PEC muscle and used it to close off where the bronchial tube was. In the process, my sternum was broken. It was a very difficult and painful surgery. It took a year or more before I actually started to feel more normal. I now have a lot more energy and feel so much better than I have in a long time. I am 68 years old and I have 2 main problems. One is that I donāt have the oxygen that it takes to do all that I feel like doing. Secondly, my legs are very weak. I was given an epidural in my neck to help with the pain and was told it may make my legs weak. If I knew then what I know now, I wouldnāt have allowed the epidural.
Maybe surgery could be an option for you. May God give you wisdom and strength in all your decision making concerning your health.
I don't know if something as simple as B12 would help or not. I was told every woman over 40 should be taking it. Some days I can barely move from the sofa and I have learned a sublingual B12 makes all the difference in my energy level in a few hours. You have been thru so much, it sounds too simple but worth a try. Most large grocery stores have it, under the tongue (sublingual) is best and faster. Dosage should be pretty high. Your body throws off what it doesn't need. I take at least 1,000 when I need it, sometimes more. Daily dosage would probably be better for me.
Thank you. Unfortunately surgery has never been an option with the location of my tumor. Heart and one king would have to be taken out of my chest and I have a MRSA history that makes it too risky. I had a brain tumor removed in 2006 and luckily I didnāt get any infections. Hip surgery in 2012 landed me with a pic line for 11 months. Iām sure Iāll find something that helps. Thank you for sharing your story though. Itās nice to know Iām not the only one dealing with this fatigue so long after treatment. Be well!
Fatigue is the number one complaint of patients post treatment. As counterintuitive as it may seem, exercise will help build up your stamina. Also ask for a consult with a nutritionist.
If you want to investigate a pharmaceutical intervention ask your doctor about Ritalin. We are the patients that this drug was designed to help. There are other, similar meds as well.
It bears repeating, wash, wash, wash your hands. Itās the best way to prevent illness. After several bouts of pneumonitis my doctor now prescribes steroids if my cold symptoms are not better in a week.
Thanks Denzie. I go to the gym 4 days a week. Iām ok when Iām working out but itās forced by myself out the door thatās the problem. I just want to stay in the house because I feel so tired. Iām starting to think there is a psychological component to my fatigue since Iām unable to work anymore. Maybe itās deoression thatās fatiguing me. Definitely going to look into therapy...
Thank you for sharing all of that. It seems youāve overcome many hurdles and are still going strong. Unfortunately the solution for one problem can be a cause for others, i.e to get rid of pain youāre now stuck with weak legs. Maybe some physical therapy/strength training would help with that? I find swimming to be the best exercise for me because itās no impact and you canāt fall over in the pool lol. Water Zumba is AMAZING!
As for surgery and me...itās not an option. Iām too high risk for infection and blood clots. Luckily the cancer is currently stable...not NED, but stable nonetheless. I will keep seeking out alternative methods and treatments and keep moving forward.
I have Stage IV NSCLC and was diagnosed back in March of 2015 - I have had Cyberknife (for a brain met), then Chemo, Radiation and Immunotherapy (Opdivo). After about a year on Opdivo I developed a third bout of Immune Medicated Pneumonitis, so my Oncologist stopped by infusions. The two previous times, she also stopped them and gave my body some time to recover -- it always Low Grade, so it never met the criteria to be treated with Steroids. My major and main complaint while on Opdivo was Relentless Fatigue. Fast Forward, it's now been 2 full years since that last infuions with no further treatment and I have amazingly remained Stable, thanks to how well the Opdivo did work despite the side effects.
It is still my main complaint and always will be and the way you describe yours is much like mine. Even when I sleep well and sleep for long periods, it never fully refreshes me. I also babysit for my new grand-baby three afternoons a week, and since is my new hope, love and inspiration. TO me it's vital to spend this time with he so we can create a bond and so that she will always remember me. Luckily, I can nap when she does, otherwise I'm not sure how I would manage and it's getting harder every day...but I LOVE her so much and want to cherish this time with her. I also try to travel to Cali (I'm in MA) at least two a year to escape the cold and spend time with my son who lives in San Diego. I can't do much when I'm there and still nap almost daily, but it's still so important to me to see him and get away. ?
I'm now also experiencing terrible leg pains (both legs that starts from my hips to my feet). All the tests I have had done (Bone Scans, Xrays and CT Scans) show the cancer is still stable and there are no sign of bone mets. SO WHY am in so fatigued...it's horrible and now to have the added pain has me extremely frustrated. I have seen my PCP Several times and also talk to Oncology about the pain and fatigue every time I see them for routine follow ups and port flushes -- No one an figure out why I'm so beat and now what this pain is. I can't sleep well...I can' walk too much or take my little pups for walks, climbing stair is hard and it's harder with the baby. I will be really tough to go to Cali like this and I just had to cancel plans to go to a Wedding there in October. I'm just not able to be up or out much, so it would be too hard right now..but I PRAY I can go over the winter. I dread winter living in NE and need my escape.
After trying to figure it out for months...I feel like the only thing that makes sense is that this is "life" with Stage IV Cancer. And to honest to be Stable and feel this miserable is so crazy. I should be "out there" living my "stable" life...but I can't!
I hope very much your fatigue will improve, your Stage is better and you should do and feel much better. I know how awful the fatigue can be and know we are now alone. If you have not had your thyroid checked along with Vitamin D levels, those are my two suggestions. I did find out I was low on both and am not on meds, but it has not helped my fatigue. Next week I'm schedule to meet with a Pain Management MD to see if he can help with the pain. I have been on meds for some time, but they are no longer effective and others give me horrible side effects. If he cant' help, my next step is Palliative Care...so I try to have some "Quality of Life". Please also keep on your doctors to do whatever they can to try and diagnosis the fatigue. I could not use Med Marijuana it made me even more tired, so I gave up and did not renew my card.
Thank you for sharing all that Lisa. I hate to say Iām glad itās not just me ...but Iām glad itās not just me. Iām dealing with the pains from my hips to my toes as well. I see a new hip specialist Tuesday morning and hopefully he has an idea. Iāve had three hip related surgeries (labrum repair x2 and a psoas release) but I wasnāt in pain until the last year (last surgery was a year before the cancer). You are so right. Part of me keeps saying to myself āwhat was the point of going through all that treatment to feel terrible?ā Yes I know weāre alive and thatās WONDERFUL...but Iāve become something i never thought Iād be. A homebody. Not because I want to be but because it takes too much energy to do anything. When I travel I tend to go by myself (did 6 days in Cancun at a womenās cancer retreat) but I spend a lot of time in my hotel room resting. I want to be jet skiing not napping lol. I like to tell myself that itāll get better but Iām starting to wonder. Itās been 3 1/2 years. My biggest fear is any kind of metastasis before I get back to being my old self. Man o man...I donāt think it ever goes back to normal. Maybe for some who had limited chemo and rads but lung cancer requires such harsh treatment.
Ok Iām gonna zip it. Iām not usually such a āvictimā. Just having a bad day. Tomorrow will be better. Thanks again for responding and please be well šš
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Starting chemotherapy 
Newbie
SCLC
