jme Posted May 27, 2006 Share Posted May 27, 2006 PLease let me know if anyone has gone through this. We are so confused and nobody seems to be able to give us any answers!! We're just at the beginning of this and some days I don't know how much more I can take. It all started back in March. Jeff had not been feeling well for a while; bad enough, in fact, that he quit smoking. He began coughing up blood and having night sweats. A few days later, he went to see the doctor, had a chest x-ray, and was admitted to the hospital with pneumonia and possible TB. There he stayed in respiratory isolation for 5 days until the CDC ruled out TB and the doctors found antibiotics that decreased his pneumonia symptoms. He came home with instructions to see our family doctor and his pulmonary doctor within a few weeks. He initially felt better and then the night sweats returned, along with extreme fatigue and neck and facial swelling. Then he began losing consciousness and falling down sometimes when he coughed. The pulmonary doctor scheduled a CT scan for a Friday and a follow up appointment with him for Monday, April 10th. By Monday, the swelling was worse. It looked to us like an allergic reaction. The doctor saw the CT scans and there were 2 large masses, one of which was pressing on his superior vena cava and his bronchial artery. He scheduled an outpatient bronchoscopy for Wednesday, April 12th. We shared with him that the “passing out” thing was happening up to 5 times a day at this point and did not always accompany coughing anymore. On April 12th, when Jeff was on the table about to get anesthesia, he had another episode. He does shake and his eyes roll back in his head, so the doctor began calling these episodes seizures. They did the procedure and admitted him to the hospital. They found malignancy in the 8x5x8 cm mass that was shown on the CT scan, but could not identify the type of cancer. By this time the swelling has spread to his entire face, neck, chest, abdomen, back, and both arms. He had an MRI on the 13th and it was clear, so the doctors say that the passing out is due to Superior Vena Cava Syndrome (SVCS), which means that the mass is prohibiting the normal blood and oxygen flow between the brain and heart. His oncologist wanted to do a more invasive biopsy, but the surgeon was not comfortable with that due to the swelling and large masses. So, they did a small needle biopsy of the area around his right lung and began radiation on April 14th. This biopsy was also inconclusive, but the surgeon, pathologist, and oncologist all “think” it is small cell lung cancer because of the SVCS and other side effects. He continued radiation through the 16th and had scans of bone, brain, liver, and bladder. All were cancer free. On April 18th, the swelling became even worse and the doctors started Jeff on Heparin, (correctly) thinking that some of the swelling was caused by blood clots. He resumed radiation on the 19th and had another biopsy on the 20th. He also had anther CT scan and Chest ultrasound. Even though they removed an entire lymph node during this biopsy, they still had the same problems with pathology. They found cancer, but could not tell which kind. On April 24th, the swelling was decreasing and he had a thoracentisis done to drain 2 liters of fluid from the sac surrounding his right lung. An x-ray showed that the mass pressing on his SVC was smaller, so they moved the radiation to his lungs. During this time, samples from the 3 biopsies had been sent to Walter Reid Clinic, Wexler Clinic, and John Hopkins. When the results from the biopsies that were sent out came back, the news was the same. Its cancer, but nobody knows what kind. Because of this, our oncologist did not want to start him on chemotherapy just in case he was wrong and it wasn’t SCLC. Other possibilities were (are) lymphatic cancer, non-small cell lung cancer, or metastatic testicular cancer, all of which tested negative. So, he was sent to Moffitt Cancer Research Institute in Tampa on April 29th for a second opinion and to hopefully begin treatment. On May 2nd, the doctors at Moffitt did a new Chest CT and an Endoscopy (biopsy where they go through the nose and into the lungs) on May 3rd. The Endoscopy had the same results as the other 3 biopsies. The new CT scan, however, revealed metastatic lesions in the left lung that were not seen before and “numerous metastatic tumors in the intraperitoneal cavity” that, in retrospect, could be seen on the previous scan. The doctors did not catch them before because they were so small. In the 2 weeks between scans, they were much larger. On May 5th, I went and picked him up from Moffitt. We all had a nice quiet weekend at home and then on Monday, May 8th, he woke up at 3:00 a.m. unable to breathe. We went to the ER where he was readmitted and put back on oxygen. He had been on it for weeks, but the doctors at Moffitt sent him home without any. He resumed radiation therapy here at our local hospital and was well enough to come home again on Saturday, May 13th, with oxygen, of course. During this week, we also found 3 "lumps" on his back, under the skin. Our oncologist did not biopsy them, but thought they were also metastatic tumors. By the end of the week, we found several more of these lumps on his back. By this time, our oncologist was beside himself. He was disappointed with Moffitt’s care and lack of results. He made the decision to start Jeff on Chemotherapy for SCLC. He still thinks that all signs are pointing to SCLC and did not think that Jeff could afford to wait another minute for the next step in his treatment. He will be getting Taxol and Carboplatinum every 3 weeks. After the first 2 treatments, they should be able to tell whether it’s working or not. If so, he will continue for several doses, if not, they will change his meds and try something else. The plan was for a PIC line to be put in on May 16th after his daily radiation, as an outpatient procedure. The PIC line would be how the chemo is administered. The PIC line wouldn’t go in. The SVCS and blood clots are now blocking the SVC so thoroughly that there is no blood flow there at all and the blood from heart to brain and back is getting there through collateral veins only. He was readmitted to the hospital on May 16th, hoping to just do a surgical PIC line with the CT scan to assist in placement. They tried 3 times; it still didn’t work. The oncologist wanted to put in a port, but the surgeon said no because they will still have the same problems with the compromised blood flow and all. It was too dangerous to cut into his chest at all. Basically, the veins and arteries in his upper body are useless right now, so they decided to put a Triple Lumen Cathedar in his femoral artery. By this time, Jeff was very weak again and unable to eat most things. His weight was down to 112 pounds, with at least 10 pounds of that still being fluid in his upper body and arms from the SVCS. He was about 2 pounds from having to get a feeding tube put in his belly. On Friday, May 19th, Jeff had his first chemo treatment. His spirits were good, he was eating a little bit and regaining strength, and he got to come home on Saturday. He was still on oxygen, of course, but he was well enough to go out to breakfast on Sunday morning. Tuesday, May 23rd and Jeff wasn't doing so well. He was unable to eat again, unable to even drink a sip of water to take his medications. He’s still doing daily radiation and it’s all catching up with him. I took him back to the hospital that afternoon. Jeff and his doctors all feel that it is better that he is there right now, under constant medical supervision. My question is...WHY CAN'T THEY TELL US EXACLTY WHAT THIS IS?? Our family doctor has never seen anything like this before and our oncologist says that he has, but it's rare. We had our 10 year anniversary this week...in the hospital. I asked our kids (2 boys, 13 and 6) how they are doing right now with dad in and out of the hopstial and so sick he can't play with them right now. You know what they responded? "It's okay, mom. We're getting used to it." Well, I'm not getting used to it. Sadly, I'm just getting angry. Quote Link to comment Share on other sites More sharing options...
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