Lung Cancer Support Group
Lung cancer is a cancer of the lungs characterized by the presence of malignant tumours. Most commonly it is bronchogenic carcinoma (about 90%). Lung cancer is one of the most lethal of cancers worldwide, causing up to 3 million deaths annually. Although lung cancer was previously an illness that affected predominately men, the lung cancer rate for women has been...
I don't know where I fit in on DS right now. My husband has stage 4 NUT/Midline Carcinoma. It's very rare, has no effective treatment, and the life expectancy is 6-9 months. He is 33 years old.
He has tumors in his spine, sternum, liver, and almost his entire left lung is a giant tumor. He never had any symptoms until just before Christmas 2014. His neck was sore and he had dull low back pain. Like anyone else, we assumed he slept in an odd position. He had lost 90 pounds from August to December, and we thought it was because we had both gone on a low carb diet. We were so proud of his weight loss! Turns out it was from cancer.
On January 12, I took him to the emergency room because he had developed an excruciating pain in his right leg. They said it was sciatic nerve pain, prescribed Norco, and sent him home. On January 18, he called me at work and told me he needed to go back to the ER. I rushed home as fast as I could (I work 40 miles from home). By the time I got home, he was having heart palpitations and his right foot was as cold as ice and pale. I rushed him to the ER and they thought he might be having a heart attack or that he may have a blood clot in his right leg. They did scan after scan, then came back in to tell us he was being transferred by ambulance to a hospital in another city. They said he had a large mass on his left lung. He was there for 10 days, during which he had a liver biopsy done and numerous other tests and scans. On January 22, they confirmed stage 4 cancer, but still didn't know what kind of cancer. We started radiation on his lower spine, then on his left lung.
Ten days later, I took him home. We went to radiation every morning, which was an hour drive. He ended up coughing up huge blood clots on February 6th, and was rushed back to the hospital. They started 3 days of chemo the next day. He was given carboplatin and etopicide. We still didn't know what kind of cancer we're dealing with, but the doctors had to do something fast.
Friday, February 20th, we received devastating news. It was our 11th wedding anniversary and we were told he has NUT/Midline carcinoma. No one has survived it. It may respond to chemo and radiation, but it quickly becomes resistant. The survival rate for NMC is 6-9 months. In stage 4, it's even less time. The only hope we have is a clinical trial, but it's only in phase 1.
I don't know who to talk to. I don't know what to do. There are so few people with this cancer that there isn't much information on it and no support groups.
He has tumors in his spine, sternum, liver, and almost his entire left lung is a giant tumor. He never had any symptoms until just before Christmas 2014. His neck was sore and he had dull low back pain. Like anyone else, we assumed he slept in an odd position. He had lost 90 pounds from August to December, and we thought it was because we had both gone on a low carb diet. We were so proud of his weight loss! Turns out it was from cancer.
On January 12, I took him to the emergency room because he had developed an excruciating pain in his right leg. They said it was sciatic nerve pain, prescribed Norco, and sent him home. On January 18, he called me at work and told me he needed to go back to the ER. I rushed home as fast as I could (I work 40 miles from home). By the time I got home, he was having heart palpitations and his right foot was as cold as ice and pale. I rushed him to the ER and they thought he might be having a heart attack or that he may have a blood clot in his right leg. They did scan after scan, then came back in to tell us he was being transferred by ambulance to a hospital in another city. They said he had a large mass on his left lung. He was there for 10 days, during which he had a liver biopsy done and numerous other tests and scans. On January 22, they confirmed stage 4 cancer, but still didn't know what kind of cancer. We started radiation on his lower spine, then on his left lung.
Ten days later, I took him home. We went to radiation every morning, which was an hour drive. He ended up coughing up huge blood clots on February 6th, and was rushed back to the hospital. They started 3 days of chemo the next day. He was given carboplatin and etopicide. We still didn't know what kind of cancer we're dealing with, but the doctors had to do something fast.
Friday, February 20th, we received devastating news. It was our 11th wedding anniversary and we were told he has NUT/Midline carcinoma. No one has survived it. It may respond to chemo and radiation, but it quickly becomes resistant. The survival rate for NMC is 6-9 months. In stage 4, it's even less time. The only hope we have is a clinical trial, but it's only in phase 1.
I don't know who to talk to. I don't know what to do. There are so few people with this cancer that there isn't much information on it and no support groups.
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I had gone to the grocery store. When I wheeled my cartback to my car I just stool there a minute. A few spacesaway a Tesla Cyber truck was parked. I had seen it on theroad a few times for a few seconds. But not close up.It looked like it belonged to 2126 and not 2026. I wasgoing to take a picture of the car but the owners cameback and drove away. It was an ordinary middle age...
It sounds like you've maybe given up a little bit, but just know that God can and does do miracles every day. Never lose hope or faith. Reach out to family and friends during the roughest times to lean on for any support you need emotional, physical or otherwise. I'm sure they will jump at the chance to help you and him out.
I'll add you to my prayer list.
Like yourself the dx came out of left field, it had already spread everywhere.....
We had four months together after his dx, and I treasure every moment, the good and the bad, smile....lots of family time, lots of gentle cuddling, lost of photos and memories....concentrate on making new ones, not going over the old ones....
I did palliative care at home,,,,it's hard,,,,very hard...
Treasure each moment, and enjoy each other