John passed away August 28, 2005. Our thoughts and prayers to Teresa and her family.
John is a 46 year old engineer. We have 3 children; a daughter, 22, beginning law school this Fall; a son, 20, in college; and another daughter ,7, in second grade this Fall. John has worked full time throughout his illness up until this May. Now, he is on disability. I go to all of his doctor’s appointments and always stay with him in the hospital.
Thanksgiving weekend 2001, broke a rib.
Christmas day 2001, had an x ray in the emergency room for the same broken rib and they saw an enlarged mediastinum and reccommmended a CAT scan. The Cat scan turned up an enlarged thymus and pleural nodules. A needle biopsy through the sternum was inconclusive mostly necrotic tissue and bone fragments. It was thought to be a teratoma but they still recommended surgery to remove it.
The surgeon thought it was most likely a thymoma and recommended removal of the large mass and said he would probably have to sever one phrenic nerve; unless both were involved, in which case he would just leave both intact. At this point we called a cousin who is an oncologist and he had his tumor board look at the cat scans. They advised against surgery until there was a more conclusive biopsy at a research hospital.
At Emory University Hospital, John had another needle biopsy (this time they put the needle through his lung), with a pathologist present, so they kept getting samples until the pathologist said he had enough and had seen some abnormal cells in the microscope. By late February there was a diagnosis of Thymic Carcinoma, stage 4A. , unresectable. The recommendation was for Taxol and Carboplatin to reduce it to the point it could be surgically removed.
John began 6 cycles of Taxol and Carboplatin every 21 days in March 2002. There was no reduction in the tumor but also no growth, which the oncologists considered a success. (We really don’t know how long it was there before it was found and whether it was growing then anyhow.)
The next treatment was Sandostatin, (the once a month shots) which kept the cancer stable for about a year and a half from around JUne2002 to September 2003. There were new nodules, this time in the left pleura.
The next treatment was Cisplatin, Adriamycin , and Cytoxan. The plan was for 6 cycles 21 days apart again. John had a fainting spell or seizure or something within a week after the first treatment. The end result was they felt he was dehydrated but because I had said the word seizure they kept him in the hospital for almost a week being tested and poked. This was October 2003.
While he was in the hospital his left arm (with the IV in it) swelled up quite a bit. It went down after the IV was removed and we came home, but it swelled up again the following week. It was so painful he had to keep it propped on a pillow. They decided that he had superior vena cava syndrome probably from the main tumor pressing on the vena cava. So now he can have no needle sticks or IVs on the left arm and he takes coumadin to prevent clots. In addition they decided to give him limited radiation at the vena cava site to hopefully relieve the condition. Because of that they dropped the cytoxan and adriamycin and just gave him cisplatin while he had radiation. He tolerated it well but he did need a blood transfusion at least once that December.
He finished out the cisplatin and radiation by January 2004 and they decided to give him a break until April 2004. At this point there was more new growth in the nodules so the plan was to give Gemzar and Taxotere over at least 6 cycles. After about 3 cycles of that combo John was feeling very tired and weak and barely able to go to work. His superior vena cava symptoms were geting better during this time so we had reason to believe the chemo was working. He began to be in severe pain all over. He couldn’t stand for me to even touch his skin. We even asked for extra blood tests, sure that something was off. The blood tests looked ok and they just told him to take more pain killers. By June, I was waking him every four hours at night to give pain medicine so that the wouldn’t wake up in unbearable pain.On the night of June 22, I couldn’t wake him, he just made moaning sounds with his eyes rolled back. At the emergency room his oxygen saturation level was in the 60% range. It should be above 90%.
He was given oxygen and came back to life. They started general antibiotics convinced that he had some type of pneumonia. When those had not started working within 24 hours it was necessary to put him on a ventilator to do a bronchoscopy and culture whatever was causing the problem. It turned out that he had a rare allergic reaction to the gemzar and it caused lung failure. The treatment he needed was to rest his lungs on a ventilator and take large doses of steroids. After he was heavily sedated and on the ventilator the doctors told me he had less than a 5 % chance of ever getting off the ventilator. They also told me the cancer had progressed rapidly and apparently become very aggressive. It had grown a great deal in the lower right pleura. I did not understand how the vena cava symptoms improved in one area while it progressed in another. He stayed on the ventilator for 12 days and in the hospital for 7 more. They could not understand why he ran a low grade fever and had trouble keeping his food down. and finally sent us home even with the fever.
We had one week at home and then ended up in the hospital for severe chest pains. We were in a different hospital because we just happened to be driving by when the pains became severe. Their cat scan showed that he had a severly enlarged gall bladder , close to the bursting point. That explains the fever and stomach problems. We were again transferred to Emory since they had all of his records and surgery was attempted to remove it. But the gall bladder was too inflamed and they didnt want to risk it , so they installed drains, and put him on more antibiotics. It was successfully removed 4 weeks later in August 2004.
There was no cancer treatment from the time he went on the ventilator until after the gall bladder was removed. As it turns out, that fast progression shown on the cat scan was an inflamed gall bladder. Since some portion of the taxotere gemzar combo seemed to have been working we went back to taxotere alone. Gemzar is out of the question although John actually asked if he could just take it again till his lungs almost failed and then stop. Taxotere was the treatment until late January 2005. At this point we saw more progression, more nodules, growth in the right pleura through the diaphragm and toward the liver.
We switched to Tarceva. After 3 months there was still more progression.
We began Alimta, I think around April 2005. John has been getting weaker and weaker during this time. At the beginning of May 2005, We had to come in for blood tests once after the second dose I believe. It was around day 10 of the cycle and he had a fever that just cycled up and down during the day. Of course if you just go in for blood tests you end up in the hospital for a week. It was determined that there was no infection probably but they heard a rub around his heart and felt that he had pericarditis. The treatment for that is steroids. While there, John awoke one morning walked to the bathroom, got dizzy on the way back and collapsed. His blood pressure had dropped and his heart rate shot up to around 180, so John got to see what the cardiac ICU looks like. He was unconscious last summer for the ICU stay. He was put on Digoxin and allowed back on the regular floor the next day. So we went home with prescriptions for Digoxin and Decadron, along with the coumadin.
John continued with the steroids for another month and had another dose of alimta.Then the oncologist said it was time to wean off of the steroids before the next dose of chemo. John was taking 4 mg a day and he got it down to 1 mg. every other day , They did say to take the 4 mg a day the day before , day of and day after chemo as usual. John had his next chemo on a Wednesday and finally got completely off of the steroids by Sunday.
That Saturday, he had some chills and shivering, and a low fever, his oxygen level dipped below 90 but came back up when the fever came down. The call center said to come in for bloodwork but not to hurry, they would call on Monday and tell us when to come in.
Monday, before they called, John had chills and shivering and his oxygen was dipping down into the 70’s. The call center said to get him to the closest emergency room which for us was Northeast Georgia Medical Center. When we got there his blood pressure was very low, at one point around 80 over 29. They gave him dopamine to get it back up. Once he was stabilized, we transferred to Emory for continuity of care.
At Emory, in the ICU again, the doctor ordered a brain scan. With his blood pressure stabilized they sent us back to the regular floor in the morning. The assumption was that there was some infection which was being treated with the general antibiotics, some dehydration which was treated with IV fluids and perhaps even the withdrawal from the steroids could have caused the blood pressure drop. They also came by to tell us that night that the brain scan revealed cancer activity in the brain. In particular there was one spot that is close to a spinal fluid duct which could cause fluid retention in the brain. The treatment, which he is undergoing, is whole brain radiation. There are 3 spots that they see but they say there are probably more that they cannot yet see so it is better to treat the whole brain. If this is unsuccessful, they can use more concentrated radiation on that one spot that could cause the most trouble. A third option is to install a shunt which would drain the fluid into the abdomen.
They also told us that the latest cat scan, which we were supposed to come in to hear about that Wednesday, showed significant growth in the liver, and throughout the lungs. All of this happened while on Alimta. It’s almost like we were feeding the monster.
The oncologist is not very encouraging and he keeps speaking about how the chemo can kill you quicker than the cancer and how you have to strike a balance between the two. I have talked to him about the possibility of trying etoposide and he has not said no at least.
The bottom line is that at 46 years of age and with a 7 year old daughter, my husband is not ready to just give up the fight. Please keep him in your prayers.
Teresa, John’s Wife