December 27 — VA Emergency Department visits first thing in the morning. They said he was dehydrated and maybe a small infection. Told him to stop Chemo until later, give his body a rest. Everyone who saw him said to drink water, drink more water, why aren’t you drinking water!!? It was a very nice experience! Everyone was nice, thorough, patient and efficient. Stayed 8 hours and got 2 L of fluid. They also ordered Miralax and it was waiting for us when we checked out. Then we went up to Outpatient Oxygen, they tested him and his O2 dropped as soon as he started walking. Within an hour of getting home the Oxygen company was dropping of a condenser and tanks.
December 26 — Called Palliative Care because: he is not eating much, doesn’t drink enough, no energy, needed to use wheel chair today because he couldn’t walk to the bathroom, can’t have bowel movement without Milk of Magnesia every 3-4 days, O2 levels are dropping when he walks and I worry about when he sleeps, can’t get a good O2 level because circulation in his fingers is low. They recommended that he come into the Emergency Department tomorrow morning to check his blood levels.
December 10 — Pic up drugs and met with Pharmacist to talk about how to administer drugs
December 3 — Veterans Administration Hematology/Oncology – Henry was seen at the VA H/O today and it was very efficient and encouraging. We met with a Fellow, who walked us through the orientation and decision making process, the Palliative Care Doctor, the Pharmacist & the Attending Physician.The Fellow, Dr M., wanted Henry to be part of the decision process of deciding the next steps of his treatment. Henry said that he understood that there was a treatment that might work for him after the Keytruda stopped working, the BRAF Targeted Treatment. Dr. M explained that the treatment is composed of two pills with fairly good response rates. For 2/3 of those who take it the tumors shrink or stay the same. 3% have a significant response rate (dramatic shrinkage). If he has a good response to the drugs he will get about a year. The drugs are harsh and cause drug fevers(as opposed to infection fevers), nausea, diarrhea , weakness and low blood counts for red and white blood cells. It will take 3-4 months to know if it is working. If he has too poor a reaction to the medications they will stop them, let him recover, reassess and maybe do a low level chemo. The doctor was concerned about how well he might tolerate the treatment because of how weak and compromised he is now. As a matter of fact, he seemed to be cautioning us about the treatment. But when Henry said that he wanted to try it, he was alone board. We also agreed that he would be followed only by the VA, so as not to make things confusing . The palliative care doctor was very nice, explaining what she does and how to reach her. The pharmacist explained how the drugs are taken and some the side effects. We also discussed the VA prescribing all of Henry’s meds related to the cancer. (Probiotic, pain meds, as well as the BRAF pills) Then the attending came in to rubber stamp the whole operation. He was very straightforward, a bit arrogant, and in a hurry. He stood in the doorway with his hand on the doorknob the whole conversation. He was encouraging that he thought that the BRAF treatment gave him an even better chance than the Keytruda. So, after they receive a few documents : the Foundation 1 letter, showing that Henry is BRAF positive, his latest EKG and his most recent echocardiogram, they will be able to order the medicine.
November 29 — Pulmonology monthly appointment — Said to try draining every other day, the thought is that maybe your chest will always hold 650 ml, maybe the extra is coming fro you belly. Can do a breathing test anytime you want can also do a sleeping O2 get anytime. Come back in 2 months when your new treatment gets going.
November 18 — Henry decided that he wanted to have his belly drained, so I called the office at 8:45, at 9:30 they called and asked if we could be at the hospital at 10:30, I said yes and threw him in the car. It was all very efficient, performed by a PA and we were home by 1:30. The first thing he said when he came back was “Thank you for making me do that” Well I didn’t make him but encouraged him. They took off 3.5 Liters of fluid, just shy of a gallon! 8-9 pounds! He feels so much better.
November 14 — appointment with oncologist, Dr. H. Keytruda sometimes stops working with no explanation. That is what happened to Henry. Fortunately, his cancer has the BRAF mutation, which means that there is a targeted therapy drug (2 drugs) that can be used to attack the cancer. They have fairly good success rate and relatively mild side effects. He will get the process going, someone from the special pharmacy will call to get more information from us. He needs to call the office as soon as we start the medicine because he will need to be seen in to office 2 months after starting and next scans will be 4 months after. So won’t really know if working until 4 months after start. He will be gone by then so we will have our next appointment with the doctor that we met in the hospital, Dr. RH. His belly is swollen and is generally not drained on a routine basis but on an as needed for comfort by patient. So call his office if and when he is ready for draining.
November 5-8 — in hospital
November 6 — Saw our oncologist’s partner Dr. H. she tells us that the Keytruda is not working and the fluid in his belly is like when you sprain your ankle and it swells that is your body trying to protect the injury. The fluid is your body’s way of trying to protect an area that has a foreign (cancer) substance near-by. The fluid in the belly could be drained, but it will come back, * but wouldn’t that give him some relief from the discomfort? He doesn’t want the procedure at first.
November 5 — ER visit because can’t keep anything down, rt foot blood vessels very pronounced and a little swollen. Chest x-ray, CT of belly, ultrasound of the rt foot. Internist admits him because fluid in lints, pneumonia, and says CT from yesterday and today show carcinoma spots on peritoneum, fluid in and around both lungs, primary tumor is larger, may be another tumor in the left lung, fluid in belly, no blood clot in rt foot. Need to give lots of antibiotics for pneumonia.
November 4 — Echocardiogram, Contrast CT, Lexington Clinic East
October 31 — Iron infusion
Weight=192; O2=94; BP=148/82
Took 2 sticks to get a line in. Said that caffeine shrinks vessels.
October 30 — Pulmonologist appointment
Dr C. Questions: 1 what does x-ray show? 2 we haven’t drained today so that you could see the site. 3 He is extremely fatigues, what can we do about it? 4 he can not walk across the room without stopping sitting down and resting, does he need to be getting up some every hour? 5 he is not able to clear all the mucus, what can we do? 6 his feet are swelling, he is wearing compression socks, any thing else to try? 7 reading and concentrating on reading is not pleasurable, is that normal? 8
Weight=193; O2= 93; BP=110/80
Symptoms: Fluid still 600-700 ml per day. Short of breath with any activity. Coughing mucus and can’t clear it easily, wakes him up. Dr: If no improvement after draining, could be a blood clot, contrast CT to check. Talc pleurodesis or surgical pleurodesis won’t help at this point with the fluid. Coughing mucus will always be there, COPD. Heart problem of some sort could cause problems so need an echocardiogram. Schedule both next week.
October 24 — Keytruda #5 and Iron infusion
October 15 — 2 units of blood transfused
August 29 — Oncology appointment and Keytruda #3 Saw dr. CAT Scan: 1. doesn’t show any new cancer places 2. A little inflamed at primary tumor (that is expected) 3. upper back lobe might be collapsing a little from the inflammation. Not to worry about it as long as you arent having breathing trouble- he isn’t having any more trouble. Can be treated with a little radiation if needed. We will know more after 5th treatment, right after the wedding. Dr said maybe should try the appetite stimulant.
June 14 — Oncology Appointment – Stage 4 beatable but not curable 9-12 months with treatment. Cancer is in Left Pelvis Bone and suspicious spot on the brain. Redo the Brain MRI in 4 months. Will send biopsied pieces off to check for PD-L1 … to see if targeted treatments are an option. These targeted treatment work on whole body, could be a pill, will use as long as tolerated .
2 questions we will ask every time we see you, both answers must be yes: 1 is it working? & 2 are you tolerating it well?
If hip pain starts we can radiate it, if fluid in lungs we can drain it.
June 5 — Non Small Cell Adenocarcinoma diagnosis. Staging incomplete- need PET Scan to see if spread. Need MRI of Brain to see if spread. Was not in fluid from lungs, fluid did however have high proteins, which is common in cancers, but no cancer cells.
More treatment options than other types of cancers
is in your lymph nodes, location of involved lymph nodes is center of chest — make surgery not an option. Lots of therapies available to shrink cancer and open airways. Adenocarcinoma grows slower than squamous but it does spread. 6 months doubling time for cancer – this has been growing for quite sometime.
This is a different Primary Cancer from your last one, and different from your prostate cancer.
We have drained lungs, they may refill, if uncomfortable call Cr C. for X-ray. Bloody Mucus – should go away, lots of aggravation from biopsy is cause of blood, stop aspirin until it stops, may happen again, a strong cough could break loose a scab.
Exercise? better you feel the better you will be able to handle exercise., take walks, build up activity, can’t hurt you to exercise a little just don’t stress yourself, don’t just sit you will loose conditioning quickly and it will take longer to rebuild it.