Stage IV NSCLC - Very Agressive

My husband was diagnosed with Stage IV NSCLC in June of 2016 since he had cancer in the pleura of his right lung. Thankfully, a pleurodesis helped him after taking off 3 liters of fluid, but since cancer was in his chest wall, only chemo was an option. My husband took 8 rounds of chemo, but unfortunately the cancer has spread to other areas, including his bones and the T10 in his spine. He took his first infusion of generic Keytruda two weeks ago, and is to take his second infusion in a week. As his caregiver, it is so hard to see the pain he is in, even though he has morphine and hydrocodone. As of today, he will begin radiation treatments on his belly for his severe pain. This disease is so terrible. It has taken a man who could do anything and caused him to become so nauseus, tired, in so much pain, and so much trouble breathing, that the life he knew is now over. He can no longer walk or he can't breathe, he doesn't want to move much or his pain gets worse. Has anyone had a loved one gone through lung cancer that has been this aggressive and had chemo keep the loved one alive but not stop the cancer from spreading. Thank you.

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  • Hi maurita,

    My husband who is 43,

    was diagnosed march 2016,

    Stage 3a,

    Had 6 rounds of chemo, 5 round shrunk the tumour by half, 6th round it started growing again..

    Treatment finished in July, he then had radio ( chaart radio)

    Sept 2016 to control the tumours...

    October 2016 he had a tumour growing on his abdominal wall...

    He had one blast of radio on this to control it...

    December 2016 it's in his brain 4spots of this tumour...

    Jan 2017 he has had stereotactic radiotherapy...

    To the 4 tumours... he is due his 3rd round of immunotherapy keytruda a week today...

    The consultant don't know which way this is going to go...

    In my heart I know conventional works for some, but othersit dont...

    It's hard to say what will and won't work...

    I do give natural vitamins as well as Drs pills to my husband do he does get his goodness down him...

    Even though your hubby can not walk a distance... try and ask the hospital to provide a wheelchair to get your hubby out to the fresh air..

    Mentally this will help, both of you.

    Ask the dr should your hubby be on a water restriction??

  • Oh my goodness! My heart is breaking as I read your story. You and he have been through so much! It's so hard to watch someone you love suffer knowing you're doing all you can do and nothing seems to help. Please know that you're helping in ways you can't see just by being there and still loving him.

    I pray God will give you both strength to complete this road you're on called Cancer. God bless you both.

  • Yes. My daughter. She was diagnosed with stage 4 adenocarcinoma with a pleural effusion. She did chemo intravenous, chemo by mouth, and finally opdivo. Her primary tumor in her right lung was inoperable and they took liters of fluid off of her lungs during the 11months she survived. The cancer stopped responding and metastasis to her abdominal wall. This also caused fluid to build and needed to be drained everyday. The cancer was very aggressive and the doctors called the opdivo our " hail Mary" with a 20% survival rate. She was so brave. I was not. We got sent home from hospital with a two week diagnosis to live. And that's what she did. It was horrible, we chose hospice at her home. She died October 25 2016. At 37 years old. Lung cancer is awful. I myself was diagnosed earlier the same year. Stage 2b. Lobectomy on the middle right. I wait every scan to be told it's back. I would've traded places with her but it wasn't God's will. I'm still grieving and asking why....my advice to you is to love unconditionally and stay close to him. ❤❤❤

  • Hi maurita! My husband has been through the same path as your husband, he took 4 rounds of chemo intravenous kind and doctor put him on Tarceva oral pill has been 3 months and it is working pretty well the cancer has not spread thank God, he is going to be on this medication indefinitely mean while it is working. The cancer still there and this medicine is keeping alive. His live has changed forever as ours too, he was our provider we have a lady girl with Cerebral Palsy 100% depend on us, I'm sick too and I'm the caregiver for both of them including my 9 years old son. I'm not going to lie, he is doing great with Tarciva, but he is not working, he is dreppresed because of this, now he is walking by himself, he is not using the Oxygen any more, even so everything is different now the cancer is in our lives and we depend on this to keep moving forward . God is with us and we trust on him. I know how your feeling and I hope some day everything goes well. God bless you!!!

  • Dear Maurita,

    Really sorry your husband is suffering so bad. I too was diagnosed with Stage IV NSCLC in June of 2016. This included a tumor on my spine onT12. A few weeks after the initial diagnosis my back pain increased to a level similar your husband. I ended up having back surgery which removed the tumor onT12 and fused my back between L1 and T11. This immediately reduced the back pain. I do not know if this is an option for your husband but it really changed my life for the better. I hope the radiation treatments have helped.

  • Oh Maurita, what a difficult road you two have been on, I really am so sorry. Please keep talking with us, and let us know how the Keytruda treatments go as you move forward. I will keep you in my thoughts and prayers.

  • Maurita,

    My heart goes out to you and your husband. You have both been through so much. Best hopes that Keytruda is effective for him. Does he have a palliative care doctor on his team? He needs help with his comfort as much as with the disease.

    Anita

  • I, too, recovered from pluerodesis when I was diagnosed with stage IV nsclc. The recovery is very difficult, especially if the chemo starts quickly while recovering. The chemo felt easier as time passed. I still do have nerve pain at the site of the incision/drainage tube. I had nearly 6 months of 2 agent chemo before dropping to maintanance (just Alimta) in December 2015....still taking that every 3-4 weeks. It's a difficult road, but nearly two years from diagnosis, I am training for a 902step stair climb. There is hope. ( I don't know if this site has a feature where you can search for my replies to other threads, but you will find more detail in some of those.)

    Bless you for your taking on this difficult challenge of caretaking and all it entails.

  • Please , keep the faith. Man, I never thought It would be my family. My dad too was diagnosed with stage 4 lung cancer, had spread to his spinal cord, and liver. At first it was causing pain in his left arm where his arm joins the neck area. a few rounds of radiation eased that pain. Been through 6 rounds of chemo. Tumor was starting to shrink at first, then around the 4 treatment, tumor had somehow enlarged.... Next went to Immunotherapy with (tecentriq). That didn't seem to do anything , a couple of tumors shrunk, and one got bigger. Had about a weeks worth of radio that seems to shrink the tumor a bit..Now the Oncologist has him on this 'hard-core' chemotherapy, (docefrez Taxotere). Was doing fine before he got on this current chemo, but now is always tired, has ongoing nausea, has no appetite ( has to force himself to eat at times, and is real particular about what he eats too) seems to run out of breath fast just walking around house, and is just feeling generally depressed all the time. I hope this new round of chemo will do some good. It's just touch and go day to day. Dr. said will maybe put him back on another immunotherapy, after he finished this round of chemo. Question; how effective is this Keytruda ?, heard mix things about this drug. It's the one they used on President Carter for his cancer, also I hear they can use it in combination with Optivo. Tell me of your experiences.. No one deserves this ... Keeping the faith...

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