Lung Cancer Hell

I have a squamous, non small cell that my oncology team made a point of telling me (or my siblings really) that this is terminal, no chance of remission. Then I was prescribed what was described as the last ditch chemotherapy, just trying to control the spread of the tumors in my primary lung. The worse part, is the side effects are akin to the two rounds of Carboplatin/Abraxane- Carboplatin/Gemcitabine.Body and joint pain,tummy pain,having to move in slow motion, zero energy,food bland,living on soup and nutrient drinks. The gawd awful bloody mucus plugs in plentitude. I have great support from siblings and my family. But this is some scary crap as my pulmonary system is steadily shutting down. How long do I have? I really don't want to know.

Angie

15 Replies

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  • Angie,

    Have you had a chance to have your own in-depth discussion with your medical team about what they can offer for both treatment and for comfort, or have they talked mainly to your siblings? If not, you deserve that conversation, but with someone who is blunt or unable to connect with your response to the information. Is there a member of the team who you feel a greater connection with, who you trust, who listens to you? That's the person you need to meet with to satisfy yourself about what options you have.

    I read your previous post, and you have been through a lot.

    No one knows exactly what lies ahead for you. I hope that you can get more help to make yourself more comfortable in body and spirit.

    Hugs, Anita

  • I have made contact with palliative care and arranging hospice. Two years into this journey, I am a realist. I am dying,no if,ands,or butts about it. I've already started the process of distributing who gets what,and making it legal by having a will drawn,and a living will.

  • I am glad to read that you are making arrangements for your comfort. My family doctor also works for our local hospice, and he tells me that patients can wait too long, and may live longer and better with hospice care than if they had stayed with chemo.

  • My heart goes out to you. God is the ultimate decision maker and he alone knows the day, time, and hour. I have heard these stories of doctors telling people they are terminal before and they are still alive. Stay positive and hopeful

  • Angie,

    I am so sorry for where you find yourself. I worked with "terminal" patients for years, and I agree with what the others have said, Hospice finds a way to make people comfortable, and often that is just what they needed. Many rally for a long time afterward because the strain of pain, etc. is gone, a lot of the medications are gone, and their bodies seem to heal.

    Thank you for being here with us, thank you for sharing your story. It is impossible to know what lies ahead for you, for any of us. But I sincerely hope you find peace in your heart and spirit and body very, very soon. Please know you are not alone, that those of us here care.

    Hope to hear more from you soon!

    Hugs,

    Peggy

  • If you live in a state with legal medical cannabis, I would give it a try.

  • I am so sorry to hear this. God Bless you. You have been thru so very much. I would get on the marijuana cannabis tip asap. Legal or not-this is your life. Where did you hear that carboplatin and Gemfitabine is the last ditch chemo. Gosh no one told me that. I am on that plus Portrazza. Ugh. Go Well and pray. God is good.

  • That combination was during the 3rd round. Now I'm on,Docetaxel/Ramucirumab. Absolutely wipes me out,joints ache,tummy hurts,intestines don't function properly, olfactory system quits,equilibrium goes to hell. Infusion cycle is every three weeks. And after 2,I know why...ugh

    Ang

  • I have 3 drugs on day one 2 on day 8 and then off one week and start over. I think the Portrazza is the kicker for me. I have all of your symptoms too only vomiting was started this week. And on we go. . .

  • Yes,on we go.

  • Angie2208 - Hello! I am so sorry to hear about your non- small cell lung cancer diagnosis. I too have lung cancer - small cell lung cancer. I am on my third round of treatment. I had to look up squamous cancer because I have never heard of it before now and found this: Squamous cell carcinoma of the lungs is one form of non-small cell lung cancer. Non-small cell lung cancers account for about 80 percent of lung cancers, and of these, roughly 30 percent are squamous cell carcinomas.

    In-Depth Guide to Squamous Cell Carcinoma of the Lungs

    verywell.com/squamous-cell-...

    You have been through so much. You mentioned that you have the support of siblings and family which is so important. Do you have a doctor, nurse, therapist, nutritionist who you feel comfortable talking to? I have a psychiatrist, therapist, nutritionist, and others who are great sources of help and information. I am sorry you are so sick from your medications. I was too with chemo and radiation. I am now on immunotherapy called Keytruda. I get one infusion every 3 weeks. My only complaint so far is headaches upon waking and a small rash when I first started it. So different than my first two treatments when I was so sick from the medication. Angie I will keep you in my prayers. Oh, I almost forgot..do you have a pulmonologist (lung doctor)? I do and she is wonderful. She is helping me to manage my severe COPD and lung cancer symptoms. I was having a horrible cough that kept me up at night. She prescribed medication for that along with 4 inhalers and 2 nasal sprays. God bless you and your family. Prayers for you.

  • Angie, so sorry your going through all this. We are all here for you if you need to vent. None of us really know the final out come of our cancer. I have had a third of my right lung removed, take a shot if Sandostatin each month. It's like a roller coaster ride, up and down, I worry from one month to another, but try to not let my feelings run my life. My prayers are with you, and God be by your side through this trying time. IM me anytime.

  • Angie2208 Hello, Thank you for sharing your story. Has your doctor mentioned immunotherapy or a clinical trial? Immunotherapy is an option to treat squamous cell lung cancer so it might be worth discussing with your doctor. Also, many clinical trials are looking at new ways to treat squamous cell lung cancer. One trial, called "Lung-MAP" is a large study testing several new treatments for patients who have advanced squamous cell lung cancer. Your tumor is tested and you might be able to get a treatment specific for you (No one will get a placebo!). You can learn more about Lung-MAP online: lung-map.org/. Please let me or Peggy ( FtB_Peggy ) know if you would like more information.

  • After the first 12 week cycle of the combination Abraxane/Carboplatin. Which did exactly what the National Cancer Institute said it would. The tumor resurfaced after 4 months,and oncology decided to try Opdivo. Which at first,connected with my immune system. Then I first felt after 4 months,and a CT scan verified, that my body did not recognise the drug.

  • So sorry to hear all the things you are going through. I have the same thing but not as bad. Had to stop chemo because of my kidneys are damaged. I thing taking one treatment. Or the other, is a trade off of other organs. I always tell people "I prefer the small nails god gives me instead of his big nails". All we can do is thank God for our family and friends. I make each day, a good day even tho it's a hurtful one. God loves us.

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