Is there anyone out there that is in bed? I have no energy. I was fine until about 8 weeks ago. Now my life is crossword puzzles and TV and I only go out for my treatment. I am that weak. I am on 60-80!MG of oxycontin daily. I was in so much pain. I just started a new treatment and its wiped me out even more. Has anyone else been bedridden for a few months then have had a treatment work and you are back to feeling more normal? Please tell me I can come back from this! Btw I have my one year diagnosis anniversary tomorrow. I have stage 4 NSCLC with lymph nodes in my chest and neck affected, it has spread to my hip,my pelvic, and my sternum .
Wiped out: Is there anyone out there... - Lung Cancer Support
Wiped out
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Enjoyabull
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I often wonder the same thing, can you come back from this. I have been like that since October 1. I don't go out unless to the Dr. I try but I'm so weak, I have lost weight even though I eat. I wonder the same thing can you come back from this?
Nancee my friend we make a good pair dont we ? I want to be a warrior and I want to fight the fight I just cant get out of bed lol probably not funny but accurate. I to have lost so much weight.
We need some success stories ! We are both stage 4 NSCLC
We need someone to tell us how this goes.
SerreckoVolunteer
Enjoyabull,
Welcome to the site, and Welcome to feeling wiped out!
I am fighting my third and final cancer, I'm terminal, and I have had almost no energy since the end of July 2016 when I was released from the hospital after a port I had implanted go septic and almost kill me.
Since I have been home, I only get up to visit the cancer center for treatment, use the bathroom, shower, sit in the living room watching TV, or working on my PC and raising money for local kids at Christmas time. But, I enjoy doing that, and it keeps me mentally busy and that is super important. At least to me.
As my breathing becomes more compromised, I have learned to live with the limitations I need in place to do all I am able to do as it is. I don't want to get into taking more medicines to lift my spirits or trying new diets when eating is hard enough. So, I am just staying as busy mentally as I can.
I beat kidney cancer in 2008, and HPV Throat Cancer in 2014 and now I have HPV cancer in my lungs and it's terminal. Of course it has decided to head for other parts of my body, and it is what it is. I might be luckier than most, since I do feel very blessed with the life I was given. I have been around the world a few times without wearing camouflage or shooting at someone, so there is no where I want to visit. I have great friends and family that come for visits often. I do not feel left out of anything.
I can stay in bed and still feel complete. I even read more than I have in the recent past, which might seem like a waste of what reaming time I have, but each day should be treated as a complete entity, and not part of a bigger picture. You get more out of it that way, or so I believe.
I think it comes down to not feeling left out, not feeling compromised, and not feeling abandoned. If you feel apart of the world around you, then I would call that a success.
Mike "Serrecko" March
Leader of The Skyline Gaggle of Noobs
A Fundraising Paintball Team
You are a very amazing person Mike , with a very amazing attitude . The world could use a lot more people with your outlook on life. I hope all of your wants and needs are being met.
Thanks for being here,
RW
Nancee54 & RwHayes,
Thank you both for the kind words, however I don't feel as if I have done much to warrant them, I do however thank you. I am just as terrified about tomorrow as my today let's me be. I just refuse to let an unknown tomorrow wreck a wonderful day, today. Thank you both again, you all give me strength.
Mike "Serrecko" March
Leader of The Skyline Gaggle of Noobs
A Fundraising Paintball Team
You have an amazing attitude! Thank you for sharing.
Mike, you are certainly an encouragement to all your followers. It sounds as though you've made you lemonade and now your enjoying it!
I pray God will continue to allow you to be a blessing and encouragement. It's a pleasure to read your posts. With all you've been through, you still send positive thoughts to everyone.
DenzieModeratorVolunteer
Its taken me more than 6 years to get back to where I am today. It took a lot of work and exercise. When my fatigue was at its worst I could barely walk up the two steps it takes to get in the house. My cousin had to help me on that second step more than once.
Talk to your dr about doing pulmonary rehab. You will learn to get the most out of the energy you do have while you work on strengthening the muscles that support your rib cage to make breathing easier. Tell your dr you want to establish a new baseline to qualify for the rehab.
It seems contrary I know but the more you exercise the more energy you will have.
I still have lots of couch time. I like to use it helping others get through this cancer experience. The experience you've had makes you an authority on your life with cancer and you can use that to help others. Its a great couchtime activity.
Thank you Denzie, it helps knowing other people have been where I am.
I got that way the last three weeks of my treatments. I have stage 3B lung cancer. I finished my last treatments 2/5/16. I still have very little energy/stamina compared to what I had prior to lung cancer. My left lung is completely blocked by the tumor which is in operable so I assume lack of oxygen does not allow me to have much energy/stamina.
As I've said before, the disease, cancer, is bad enough in itself but the treatments to help you also are hard on the whole body.
I pray you can regain some of your strength and stamina. Maybe someone can tell us both how to bounce back from this set back in our lives.
God bless you
I have been up and down since May stage 4 lung cancer I had a wedge removable and was in bed for months got feeling better so did try to do things that did not need a lot of walking then I had cyber knife radiation treatment and it took alot of my lung compacityand I got the flu so hear I am in bed again and now they found more tumors so it all starts over again this time I think it's going to be chemo and that scarce me I try to stay positive I facebook alot feel like I'm still in touch with friends I also like to color in adult coloring books and watch alot of TV but I'm trying to get out and do thing even if I have to do a wheel chair haven't yet weather is to cold for my lungs but I'm do want to push myself as long as I can even getting to the car is hard but I do enjoy a nice drive so my suggestion is push yourself as hard as you can don't settle for laying in bed constantly good luck I wish you the best
Thank you stutheit you have been through a lot. I'm praying for you.
Thank you I was praying so hard that after the cyber I would be cancer free I just knew it would be so to hear I have masses in my right lung just devastated me I have been very positive and strong through this whole ordeal now I'm scared
I know what you mean, I was felt so positive on Opdivo and it didn't work and my cancer spread to the sternum in addition to growing everywhere else. I also lost my voice, which is so very hard not to be able to talk to my family and friends. But although we are scared we cannot give up hope. I am on new chemo too! This chemo could work for both of us!!
It will I'm trying to stay positive I go back to my oncologist on Wednesday I'm sure she's going to schedule a pet scan I'm just scared that it has spread farther out my lungs it has gone from my right lung to my left lung to my right lung and I'm worried it's in my blood now but I'm trying to stay positive and know there is a cure for both of us
Praying for you! My PET scan is tomorrow.
I will be praying for good results sending you positive thoughts and the best of luck
How did it go your pet scan go when do you find out your results sending positive thoughts and praying for good news
I get results in 2 weeks. I was on carboplatin and gemzar and Dr. didnt feel it was working so he ordered pet scan to get a baseline for new treatment.
Dear Enjoyabull,I am praying for you to maintain your strength and for success with your treatments. I also am praying for the success of everyone else on this site.
I'm scared as well. I try to give it to God. But my mind is always thinking. None of the medicine I've taken has helped. Tomorrow I face the choice, do I want to go on taking treatment or not. Part of me doesn't but then I feel like a quitter. I take Keytruda it is an immunotherapy like Opdivo. I've taken 2 treatments, it hasn't helped, but a little voice tells me not to give up. I will pray about it and I'm sure I will come up with the right thing. I'm praying for y'all as well. Nancee
Please don't give up fight this fight you can do it I have faith in you and I'm sure you have faith in God stay positive if you need to talk you need encouragement I'm here for you
Nancee what you decide is personal but I vote for you hanging in there with the rest of us and finding something that will kick this Cancers butt so you can feel better and be here for your family and friends. I have enjoyed our messages, I for one need you!
I feel extremely tired and less energetic when my blood counts get too low, otherwise I seem to do OK. This week is supposed to be my rest week between chemo cycles, but I am going in twice for labs. If counts are low, I get an injection that helps bring them back up so I don't miss any of my chemo treatments.
What kind of injection do they give you?
Enjoyabull i'm starting in to my fourth year and yes I am in bed,but I also have emphysema. I am on oxygen I am extremely tired. The only time I get out is to go to dr s or tests. My tiredness I think is a combination of everything i am praying your tiredness goes away. How soon I do not know. Just keep on going be strong and fight don,t give up.with LOVE JO
Nancee54• in reply to
Jo your replies are uplifting thank you so much.
Nancee54 any updates on your treatment?
Enjoyabull• in reply to
Jo thank you! I will not give up and 4 years is so inspiring. You are amazing! I appreciate all your advice and your strength!
Nancee54 thank you I enjoy being here with you guys. you all inspire me. with love Jo
I was so tired (fatigued) from chemo I could hardly move either! I am no longer on chemo, so for the last 6 wks I have been on Opdivo and the tiredness is gone!! I'm back to how I was before the cancer! Good luck and God bless you
Good luck on the opdivo! Thank you for sharing.
RwHayesCommunity Superhero
Enjoyabull I am sorry I replied here 2 or 3 times and kept forgetting to reply to you . Anyway I cannot be of much advise on this issue I am kind of at the same place myself except I have not gotten bedridden as of yet but I think it could easily get to that point in a short time. I hope you are better soon.
Hope of healing your way,
RW
Thanks RW hoping this new treatment works so maybe I wont be so tired.
I hate that you have to spend so much time in bed. I am approaching my 3rd anniversay of the removal of my upper left lung. As I have shared before, it is my lack of optimism that keeps me down. This disease took my Mom many years ago, and my brother only 2 days begire my diagnosis. I had 4 rounds of chemo. Had only good news to date, but worry when the bomb will drop. Went to the doctor yesterday, everyone in my family has been fighting the flu. Mine seems to be affecting me worst, had a breathing treatment, got antibiotic and steroid shot. I pray you can get back to a more active lifestyle soon. I go, unfortunately, able or not.
Three years is wonderful! Thank you for your kind words. I to am not very optimistic and I have to work on this. I actually think my biggest problem is the narcotic drugs they put me on. Hard to get morivated with 10 mg of oxcontin every 4 hours. I am going to ask for a different pain ones next time I go.
Be assertive with your doctor if that's how you feel. I also know this is a family disease, it affects everyone that loves you,but, on the flip side, this is a very personal journey as well. Be selfish to an extent. No one , that has never walked in your shoes, can know exactly how this feels. God bless you, as he has me!
Thank you Memaw0100! I will talk to my Dr. about changing my pain meds this might change my energy level. I just wish I could breath! I feel like my lungs are so compromised these last few weeks. I am however getting really good at crossword puzzles!
I hear you it's a lot of work to just breath and people who you don't have breathing issues just don't quite understand how difficult it is for us even slight little movements take energy to breathing I understand what you're going through and I wish you the best of luck
Thank you Stutheit I appreciate your support. Breathing which I used to take for granted is so important now. My lymph nodes are so swollen in my chest they are compromising my breathing. I also wonder if we all should be walking on a treadmill just for a few minutes a day to build ourselves back up?
Dear enjoyabull
Yes! I was mostly in bed for the first 3 months after diagnosis and during first line chemo but have now resumed an almost normal level of activity. It takes time, no doubt. There is no definition for fatigue that makes any sense until you feel it...the water glass in the side table is too far away to possibly pick up etc.
a few ideas: do you have access (ask oncologist for a referral) to palliative care docs/nurses at your hospital of cancer center? They can help manage all the symptoms/meds/additional services (nutrition, physical therapy, psychotherapy etc). I wrote a reply a while back on a different thread about how much I encourage people to access palliative care specialists.
I use a fentynl pain (transdermal) patch instead of oral oxycodone or OxyContin. I am much more lucid, much less tired and foggy (and it's easier to change a patch every few days than all the pills)...also no narcotic-induced constipation. of course do take the oxy and keep Pain under control, but it will definitely make you sleepy and fatigued and generally "bla." Ask your doc if fentynl might be a good option for you
Steroid (dexamethasone/decadron are what I use) can be prescribed to help with side effects (and give me a bit of an energy zip). They are pretty standard as a prescription with many chemos.
My palliative care doc at one point when my fatigue was so awful suggested that another option we could consider was to add some ADD or ADHD meds (not sure which) to help with fatigue but I ended up not needing that.
I have also found that walking around the block really helps once you get yourself out the door. It's So hard to do but truly helped me. also I've found acupuncture very helpful. And eventually Yoga. And Utilizing an awesome therapist and antianxiety/antidepressant meds. Healthy food when you can stomach it (nothing sounds worse to me than vegetables when I'm nauseated-I get it.) I am now seeing a pain specialist at the spine center to try nerve blocks for pain so that I can try to get off the pain patch. And my actual sleep was horrible quality at times because I was worrying so much at night (and getting up to pee because I had so much retention/swelling)...audio podcasts or books helped me too (but mostly I listen to an audio rosary or prayers in middle of night, if you find comfort in prayer). Ambien once in a very rare while
So yes, there is hope! I am currently training for a Fight For Air Climb of 902 stairs (42 flights). When I was in the depths of darkness where you are now, I never imagined I could do this. But there is hope of gradually returning to some of the activities that matter most to you. Set your eyes on what is good in the present and what you can hope for tomorrow, and ask your doc about some of what I wrote above about my own experience.
Best wishes and prayers,
Jennifer
Thank you so much! You are wonderful to share your journey with me. I love meeting people like you, you inspire the rest of us. God bless you ! You have given me hope!
Thank you!
I was just thinking today....."My but is actually sore bc of how much sitting on it I've been doing!" haha it really does though! I have to sleep using a wedge in bed bc of my lobectomy....I haven't been able to lay down bc I feel like I'm suffocating if do! So if you add the time I'm sleeping sitting up and all the time during any day that I'm just sitting in my recliner, ........it's a LOT of time that I'm on my @$$!!!! Never in my life have I had my but sore from too much sitting!! I hate how Cancer seems to be an energy sucker!! My mom has battled 3 different types of Cancer through her life....and I feel terrible bc I just never knew how tired she was all the time!! Because I have young kids still,... I do a lot more than I would be doing if I didn't have them...that's for sure!! Anyhow...I just thought it was funny that I found a discussion on exactly what I was thinking about myself!! Haha. I do think that the energy level slowly comes back for us....I don't know about fully but I really do think it will improve over time...and especially as the Springtime gets closer! Hang there everyone!!
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