Scared to ask

[Enjoyabull]

I was diagnosed January 15 2016 with stage 4 lung cancer. I have a tumor on my upper left nodule of my lung and it had spread to my neck and chest lymph nodes, my pelvic area and my hip. I was put on carboplatin and alastin. The cancer shrunk and I was put on Alastin for maintenance. The Alastin did not work after 3 months so I was put on Opdivo for 4 treatments. In the meantime my pain level was off the chart and I started taking Oxycotin. The Opdivo didnt work and the Cancer spread to my sternum. I have lost my voice. I am now up to 10 mg of Oxy every 4 hours and I am a walking zombie. No quality to my life. They now have my treatmets back to Carboplatin and Gemser. I have had 2 treatments and basically do not feel any better. I asked my Dr. About radaition he said I have it in to many places. My question, is my battle like anyone else out there? I have only had one good scan in like a year! I dont have any remarkable gene or mutations. I just need to know there are other people that are battling and feeling like they are not always winning... like me. I know we are all fighting and hopefully winning but can someone else share their experience so I know I have hope. I want to have hope. I basically am in bed most of the time now. I get out of breath after like 5 mins of activity. This is brand new just since this new treatment.

[Hidden]

I thought was just me walked round like zombie lol

You need to stay strong and eat well YOUR bound to feel like sh##% as your bodies been hijacked.

Only thing i can say is stay positive and remember as quick as cancers come they can go as quick.

Am sure if doctors thought nout could be done radiation all over would not be concern to them

[Enjoyabull in reply to Hidden]

Am I replying in the right place? I wanted to know if you are on pain meds?

[scifiknitter Blogger]

Enjoyabull,

I'm sorry that you are so uncomfortable and that your current treatment is not making you feel better.

A couple of thoughts: first, have you discussed palliative care with your doctor and are there palliative care resources in your area? This is not hospice care, this is a medical specialty devoted to patient comfort. My GP is a palliative care specialist and he says there are lots of things he can do to improve a patient's life - special pain patches that don't make you drowsy, medical marijuana, etc. Oncologists can be resistant, trying to do it all themselves, so you may have to push for a referral.

Second, maybe targeted radiation to some of the hot spots in your bones could relieve your pain.

I hope some other people here have some good ideas for you.

Anita

[Enjoyabull in reply to scifiknitter]

Thank you I will talk to my Dr. The pain is in my back and all my glands and its so unbearable that before pain meds I was taking 5-7 hot baths a day. I am pain free now with the exception of the uncomfortable lymph nodes in my neck and chest feeling like they are choking me. I will ask about pain patch. Hate this fog I am living in on Oxy.

[Jenniferroseolson in reply to Enjoyabull]

I am 45 yr old stage 4 nsclc patient on maintainance chemo that is keeping cancer stable in lungs since April 2015 (but have had brain surgery and srs radiation to brain for mets/lesions there). I strongly agree with anita's comment about palliative care--they have been instrumental in managing the various aspects of this diagnosis, helping with referrals to psychologist, dietician, an intervention pain doc (recently I had a nerve block to try to help with some of the pain at incision sites), a mindfulness class etc. Also, they are so good at managing all my meds including pain. I found that the fentynl patch worked much better for me than oral oxycodone. Very little fog. And I have been slowly going from a high dose patch (100mcg, I think) now down to only 12mcg as my surgery-related pain has decreased (from almost a year and a half ago) Steroids (dexamethasone/decadron) help me during chemo week to not feel quite so awful. The fatigue is always difficult. I really do encourage you to ask about palliative care. Best wishes.

Jennifer

[RwHayes Community Superhero]

Hi enjoyabull,

Which kind of lung cancer do you have?

[Enjoyabull in reply to RwHayes]

NSCLC. Funny I just went through all my paperwork and cant find any diagnosis except malignant neoplasm left lung. I have a tumor on my lung with all my lymph nodes in my chest and neck affected and spread to my sternum my pelvic bone my hip bone

[RwHayes Community Superhero in reply to Enjoyabull]

Mine is sslc neoplasmic left upper lobe. I'm sorry things are down for you now I hope you find a therapy that works soon. Prayers are with you.

RW

[Denzie Moderator Volunteer]

The patch my dr put me on is fentanyl. Its good for 72 hours so I don't have to think about taking a pill every 4-8 hours. I use Norco 5-325 for breakthrough pain.

[Enjoyabull in reply to Denzie]

Thank you, I will talk to my Dr.

[Jessi08 Volunteer]

Enjoyabull your story sounds similar to my dad. Anita had a great suggestion to seek out a palliative care doctor. My dad experiences extreme bone and joint pain from the abraxane. His oncologist suggested seeking the palliative care Dr for the purposes of medical marijuana. My friends father went through this as well and said it was the only thing that helped the pain (even over morphine) it is a process to get approved depending on your state but luckily my dads dr tried to expidite things. We are in NJ

Best of luck

[Enjoyabull in reply to Jessi08]

I am looking in to medical marijuana and will let you know how I make out. I am in NJ too

[Jessi08 Volunteer in reply to Enjoyabull]

Wow! Small world!! If you ever want to connect let me know! I chair the jersey shore free to Breathe run/walk annually, this year we will be in asbury park ☺️

[Peyz33]

I have learned overcmy journey to listen to my body. If you think the current treatment is not working tell your oncologist. The most important part of fighting this beast is outsmarting it - I was on cisplatin - horrible stuff - but it worked so for 16 weeks I felt like crap but then I was done and started to feel better - of course I had to see a shrink every week because of my huge fear of reoccurrence - which never happened - well so far that is - but it took 5 years of therapy to not fear it's return. Whatever happens happens. We just have to muster up what strength we have and fight like hell just hand in there - maybe the next treatment will be the one that works for you lung cancer is the most isolating of all cancers because of the stigma attached to it - so put up your dukes - you have a support network here who "get it" - just remember you are not alone

Karen

[Enjoyabull in reply to Peyz33]

Thank you! I appreciate it. What kind of lung cancer did you have?

[FtB_Peggy]

Ditto!

[GainesH]

I'm so sorry to hear about your health. I'm Teddys wife and I'm writing from my experience with him. Teddys cancer didn't respond to anything. Chemo or Opdivo. Dr said they have never seen a cancer not react to anything before. It took off & wouldn't let go. His cancer started in his left lung & lymph nodes. Was Stage 3A Squamous Cell Carsanoma. It ended up secondary mestatic liver cancer Stage 4 terminal. Started end of April coughing up blood. I lost my sweet husband December 7, 2016. Prayers for you and hugs!

[Six1 in reply to GainesH]

GainesH sorry to hear that My prayers are with u Hi everyone phone trouble Enjoy abulll these are great people😇 they have been a big support the to me Stiii waiting t to b accepted in a treatment center maybe itlll happen

[GainesH]

He was in so much pain. He was on 300 mcg Fentenol Patches, Neouratin for nerve pain, 60 mg Morphine tabs every 3 hrs. Nothing helped till he was put on Hospice. They took him off Fentenol Patches and put him on Methadone. 1st time he didn't have pain.

[Enjoyabull in reply to GainesH]

I am so sorry for your loss

[GainesH in reply to Enjoyabull]

I pray that you will survive this horrible disease. It has taken so many precious lifes. God bless you!

[FtB_Peggy in reply to GainesH]

Lisa,

I have been thinking of you and hoping you were finding some comfort from your wonderful family through this holiday season.

It is so good to hear from you, I hope wrapping yourself in sweet memories and allowing yourself to feel the myriad of emotions that are washing over you brings a softness to this hard time.

Bless you and hugs.

[Hidden]

First, "Enjoyabull"! Love it!

Second, you have cancer, of course you don't have any quality of life. Are you supposed to?

Third, your cancer is not like anyone else's, so resist the urge to compare. What you're going through now, however, is common to all LC. It will take time. After my treatment I was on oxygen, a nebulizer 4 times a day, prednisone and all manner of antibiotics. I had pneumonia, radiation pneumonitis, every ache imaginable, developed cataracts, lost my hair (although I did love being bald), a permanent cough that makes people say, "Oh, that doesn't sound good!" as they back away from you. In short, I was miserable. Mis-er-a-ble. And I'll bet every person here who replied to this post had some varying degree of misery. Fifteen months out I still cough, though not as much or as violently, I'm off oxygen and the nebulizer and take only cough medicine at night. I walk about 2.5 miles a day, but still take a nap every day.

Add to all that the emotional aspect of having cancer. No one is prepared for it. It takes time, as I said in a previous message to you, to adjust. Be as kind to yourself as you would be to a friend or loved one having cancer. As patients, we forget that sometimes.

One day at a time. One foot in front of the other. That's all you can do. Don't expect more of yourself until you're ready. You'll know when.

[Enjoyabull]

Thank you! That was awesome, you are an inspiration. I appreciate the advice.

[Prodius]

Enjoyabull, have you tried Mary Crowley? Friend of my is doing quite well after doing their vaccine trial and there are others that were on the edge. marycrowley.org/stories/con... Just don't give up