Questions-should have asked year ago

[Marymac4441]

Hi I'm new and should have been on this over a year ago. I will try to be brief. Discovered lung cancer 2/16, done radiation, had to have my lungs drained of fluid weekly for about 4 months, tried pills chemo but had to stop for almost lost vision and have done regular chemo on & off since 2/16. Questions: Does anyone else have to sleep upright due to breathing problems and have you found anything to help with sleep? I'm really weak and struggling to gain strength back due to bad chemotherapy dogs - any suggestions to help get some strength back. I keep losing weight even though I eat 3 meals a day - any thoughts? My last scan showed no tumors or fluid in December 2016 so have been contemplating stopping now as the last months have been prevention per my doctor. Prognosis is that it will be back but I'm ready for quality is that wrong?

[JeanE41]

Welcome to this community. You have certainly had a difficult journey. My lung surgery left me very weak for over a year and I didn't have radiation or chemo. My surgery was in June 2015 and I'm just starting to feel better. I think we underestimate how long it takes to recover. Try to eat a healthy diet and listen to your body. Do things you enjoy when you feel up to it and rest when your body tells you to. It's a long recovery and some of us never get back to our pre surgery state.

I hope this helps. Do keep us posted on how you are doing.

Jean

[Marymac4441 in reply to JeanE41]

Thanks Jean

[Marymac4441 in reply to JeanE41]

Thanks Jean!

[imina]

Keeping you in prayers that you find the best treatment. I hope you have your family n friends helping you communicate with your doctors to find the best care and treatments

[Kenny1108]

Same boat as you with the breathing. Only not drained as often. I try to sleep normally but then have to sit up soon after due to shortness of breath. I end up having 2 pillows rest against the headboard with the closest one to my head sort of crunched up. I found if I can get the uperr part of my chest somewhat elevated I can doze off better. Sad to feel so old at times.....

[Helenmcq51 in reply to Kenny1108]

There are wedge pillows available that come in various heights. Available at target walmart some drugstores usually cost less that $30. Makes sleeping easier. I'm sure you could find them online also. Good luck restful sleep is very important to healing

[Marymac4441 in reply to Kenny1108]

Can I ask how old are you? I don't even try to sleep in a bed any more. Just sleep in a recliner. Thanks for sharing.

[Kenny1108 in reply to Marymac4441]

I am 58 years old. Diagnosed in Sept. 2016 with stage 4 lung cancer.

[Marymac4441 in reply to Kenny1108]

I'm 60 and was diagnosed February 2016. The tumors were destroyed and the fluid in and around lungs have stopped for now. This showed on scan in December 2016. Been on preventive chemotherapy every three weeks since December scan but I get so sick from the chemo. I'm planning on going off the chemo when I see my doctor April 7. I'm so weak I just can't take another chemo hit on my body. Is that so wrong?

[Kenny1108 in reply to Marymac4441]

Its not wrong if you feel that's what you need to do. I have a tumor that was treated by chemo and did shrink but cancel cell in fluid had me going on Opdivo even though I don't have any PDL-1 mutation ( if that's what you call it ). My oncologist said Opdivo would work just as good as the chemo he would put me on next but without as many side effects. Well, Opdivo did not work as I have new growth. Getting 2nd opinion on Thursday.

I feel bad that you feel you cannot take more chemo. It seems to be holding your problem at bay, I'm just trying to get to that point. I wish you the best and will add you to my prayer list.

[Marymac4441 in reply to Kenny1108]

I will keep you in my prayers. Let me know how second opinion goes. My chemo fog has gotten so bad that I lose 3 days after each chemo plus all the strength I had built up. I just need a vacation. Thanks

[Kenny1108 in reply to Marymac4441]

I will,,,,,,,,,,,,tx

[dreich58]

When I was first diagnosed I was losing weight. The oncologist nutritionist recommended ScandiShake to take. The only place I can get it was online. Also she recommended at least 2000 calories a day so you might start tracking what you're eating to make sure you're getting enough.