The cat scan last week showed a possible tumor on Barbara's spine, at the T8 vertebra. This had us very concerned, since this is the first indication of the spread of the disease beyond the liver. Until yesterday, there was no pain associated with the new spot. Then, yesterday, Barbara had bad pain attacks all around her midriff and in her back.
Today was the start of the clinical trial for Barbara. With the new pain attacks, Dr. Lenz was unsure if Barbara should start the trial or go directly to radiation. After a long discussion, we decided to start the trial, but get a quick MRI to see the exact status of the disease.
It was a long day at Norris. We arrived at 7 AM for blood testing. Then we met with Dr. Lenz. He was so worried about Barbara's pain that he arranged for an intravenous infusion of Dilaudid. The drug eased the pain, and Barbara was transferred to the clinical trial unit. She was in a normal hospital room, but with a full-time research nurse whose only duty was to take care of Barbara. First came several EKG's, spaced 10 minutes apart. Then, another blood test. Finally, Barbara swallowed the experimental drug (in pill form). After a 2 hour wait, more EKG's and another blood test. At 2 pm we were free to go home.
At home, Barbara was disoriented and nauseous. We don't know if we are seeing effects of the experimental drug, or lingering effects of the pain medicines. She is also sleep-deprived, sleeping only 2 hours last night due to the pain.
We go back for a second dose. We both feel apprehension.
Barbara had her second day of the clinical trial. It was the same as the first day, with lots of EKGs. Then she had the MRI. It produced a surprise: not only does she have a tumor near her spine, but she has a fracture of a vertebra. This could explain some of the new pain. We don't know if the confirmed tumor will affect the clinical trial.
This week Barbara has another clinical trial session, and an appointment with radiology to discuss if the tumors (both new and old) are treatable with radiation.
With the increased pain, Dr. Lenz prescribed some new pain meds. It has become confusing, with the array of drugs. Thankfully, we met with Dr. Ryan of Pain Management. She made sense of it all, and reduced Barbara's pain drugs to two: one long-lasting daily med, and one short-acting med for breakthrough pain. We're fortunate to have her on our team.
Meanwhile, Barbara continues to take the experimental drug daily. In addition to bowel swings from diarrhea to constipation, she is experiencing generally crummy. It's hard to tell how much of these symptoms are due to the experimental drug.
Two weeks ago, Barbara had an automobile accident. She fell asleep driving home from Montrose, and hit a parked car and a parked motorcycle. The air bags deployed, hitting her in the chest. She also has pain in her pectoral muscles in front of her arms - probably from her arms being jerked back by the steering wheel. She was taken by ambulance to Verdugo Hills Hospital, where they did a chest XRAY and found no broken bones. The doctors advise her that torn soft tissue, like cartilage, can hurt as much as broken bone, and takes weeks to get better. In the last two weeks since the accident the pain has not diminished. It is especially bad when she coughs or breathes deeply, or tightens her chest muscles while maneuvering.
Barbara's sleep has been irregular for several weeks. It is possible that the trial drug, or the other drugs which are part of the trial, have been blocking sleep. She won't be driving for a while. Her car was totaled. Here is a photo.
This week, Barbara started the SBRT focused radiation on the spot on her spine. She has a total of three sessions. The radiation has no effects, either during or after the exposure. But the process is painful since Barbara must lie motionless with her arms up over her head. The chest pain is worse in this position.
Meanwhile, the clinical trial is proceeding, with ophthalmology appointments every other week, EKGs and blood tests every week, followed by a visit with Dr. Lenz. We are certainly spending a lot of time at Norris.
Barbara resumed her clinical trial. That means that all of the associated medical tests resumed also: EKGs, blood tests, physical exams, eye exams, and special tests like MUGASCAN, which is a radioactive isotope, injected into her vein and then monitored as it interacts with the heart. It seems like we spend the better part of each week at medical appointments. Worse yet are the side effects. She has lost her taste, and foods are no longer enjoyable. It's hard to force food down, and she is losing weight. She is not sleeping well, and is tired all of the time - she often falls asleep while we watch TV, but she can't sleep most of the night.
Last Saturday, she was hit with a bowel blockage. Looking back, she realized that she hadn't pooped in 8 days! On Saturday, when she was unable to clear the problem at home, we called Dr. Lenz's on-call doctor, and he made arrangements for her to be admitted to Norris Hospital. They ran tests, asked their typical hundred questions, and scheduled more tests for the next day, including XRAYs and a CAT scan. Sunday morning, after two XRAYs, the blockage started to clear itself. After a day of doing nothing, they finally released her, and cancelled further tests, including the CAT scan.
The next day, Monday, we came in for our regular appointment with Dr. Lenz and a CAT scan which was part of the clinical trial. To our surprise, the in-patient doctor yesterday had cancelled all CAT scans, regardless of who had ordered them. It took much negotiation to restore the CAT scan appointment, and merge it with a hydration infusion ordered by Dr. Lenz. A short day turned into a long day.
Since being released from the hospital, Barbara has been plagued with diarrhea. Dr. Lenz is worried that it might be a CDIF infection. So, we are going in tomorrow for tests and another infusion.
Four days ago, Barbara's heart went into continuous atrial fibrillation. After two days of vigorous irregularity, it settled down to a minor inconvenience. She got winded going up stairs. Today, she had the MUGASCAN (mentioned above). Unfortunately, the MUGASCAN watches the heart's reaction to the radioisotope during contraction, and it needs regular contractions. With afib, the scan must throw away irregular contractions and try again. The test usually takes 30 minutes, but with the rejected contractions (two out of every three), the test was going on for 2 hours when Barbara demanded that it be stopped since it was going nowhere. Upon hearing this, Dr. Lenz insisted that Barbara see her cardiologist about the afib before the clinical trial can be resumed.
So now we have eight medical appointments scheduled this week!
Meanwhile, we had a wonderful Christmas morning at Michelle and Brent's. It's the last time to be together in their South Pasadena house, since they are moving to Wrightwood, and making their "vacation chalet" into their permanent home. We are delighted for them. I took a few photos at the Christmas brunch.
The day after the aborted MUGASCAN, Barbara was admitted to Norris hospital for cardioversion. The procedure is usually done as an out-patient, but they figured that an in-patient would have higher priority, and the afib was delaying the resumption of the clinical trial. Well, it didn't work. They kept her overnight and through the next day, as they were unable to schedule an anesthetist. Finally, Barbara saw that the procedure wasn't going to happen, and she checked out of the hospital. That caught everybody's attention, and she was scheduled for cardioversion the next day as an out-patient.
The cardioversion (shocking the heart into a normal rhythm) took place on Thursday, Jan 7. It worked, and we went home happy. But the joy was short-lived: by the next Thursday, when the clinical trial was to resume, she was back in afib. The trial was again delayed, and she was referred back to her cardiologist, Dr Clavijo, who referred her to the afib expert Dr. Doshi.
Today we saw Dr Doshi. He considered all of the constraints:
Doshi recommended installing a special new pacemaker, a Nanostim, which has just completed clinical trials, with Dr. Doshi as one of the trial doctors. The device is tiny and is implanted inside the heart, eliminating the metal leads. This device will cause Barbara's heart to beat regularly. Then, in a few days, Doshi will perform cardiac ablation to disable the heart's AV node, preventing it from putting out extra undesired pulses.
Having a regular heartbeat will certainly improve Barbara's quality of life. With afib, she is constantly exhausted whenever moving around or climbing stairs. There is just not enough blood flow to support the muscles. Hopefully, she will regain some of her stamina.
As planned, Barbara had the pacemaker installed. Three days later she had her AV node ablated. The fast paced atrial fibrillation is gone, but she still has a slight irregularity. The pacemaker is currently set at 70, but she occasionally goes up to the 80's or low 90's. No longer does she feel exhausted when moving around and going upstairs, so we're happy with the result.
A few days later, Barbara had the MUGASCAN. Then we met with Dr. Lenz. Since Barbara has interrupted the clinical trial, it is not clear that the investigator will let her resume the trial. We had a serious talk with Dr. Lenz, and he is less enthused about the trial. In Barbara's case, it is delaying regular treatments like radiation and chemo. The side effects are worrisome: the high phosphate levels, the low sodium levels, and the possibility that the heart arrhythmia was caused by the trial drug. Together, we came to the conclusion that Barbara should withdraw from the clinical trial. Given all that has happened, we thing that it is a wise decision.
Lenz immediately referred Barbara back to Dr. Song, for resumption of the SBRT radiation treatments. The previous SBRT was focused on the spine, but the new treatments will deal directly with the spots on the liver. Barbara had no adverse reaction to the radiation before, and we hope for the same good experience this time.
Preparations for Barbara's SBRT radiation are continuing. She was supposed to have an MRI last Friday. A pacemaker would normally disqualify a patient from having an MRI, but Barbara's Nanostim pacemaker allows an MRI (in Europe MRIs are approved - here in the US the FDA has not yet acted). There was a snafu in scheduling where the oncology radiation scheduler did not inform Barbara's cardiologist that the MRI was scheduled. We happened to have an appointment with the cardiologist on Thursday, and they scurried to have someone available the next day to attend the MRI. Well, that person did not meet the requirements of the MRI people and the MRI was cancelled.
When Dr. Song (the SBRT doctor) heard of the cancellation, she decided that a PET scan would give her the information that she needed. Barbara had the PET scan Tuesday. She also had a CAT scan on Monday - it's called a simulation, since the radiologist goes through all of the motions of an SBRT, but without the radiation.
Aside from spending many hours at medical appointments, Barbara is overloaded with the medical insurance details. The insurance people keep changing the way they report payments, making it increasingly difficult to reconcile the payments with the bills. The medical providers increase the difficulty by billing separately for the doctor, the facility, the drugs, the equipment, etc. Barbara is spending many hours each day trying to determine what we really owe, and what is double billed, incorrectly "coded", or just plain bogus.
Barbara's SBRT treatments start in two weeks.
After studying Barbara's PET scan, Dr. Song (the radiologist) conferred with Dr. Lenz and they recommend canceling the SBRT. The cancer has expanded up from the surgical area on the right abdomen, and is also showing up on the cardiophrenic lymph node just below the heart. With this new development, chemo is the recommended treatment.
Dr Lenz talked with us at length about the options. The drug that he really wants to use, EBHB4, is excluded because of Barbara's atrial fibrillation and her need for blood thinner. The next option is a clinical trial with Paclitaxel and BPI608. The drug BPI608 is the drug under clinical trial, and it is the one that Dr. Lenz feels is most likely to attack Barbara's cancer. But it can only be taken under the trial protocols, which pair it with Paclitaxel, a well known drug often user for breast cancer. It has lots of side effects, including hair loss. The third treatment option is Gemzar and Xelota; Barbara was on these drugs during a previous chemo treatment period.
After discussing the options at length, Barbara and I decided that the Paclitaxel/BPI608 option was the best choice. Paclitaxel will be given once a week for 3 weeks, followed by one week off. This cycle will repeat for an unspecified length of time. The BPI608 is a pill that is taken every day.
In preparation for the chemo, Barbara had a port installed in her chest, near her right shoulder. This is a tube which goes directly to a blood vessel near the heart. Unlike the previous Groshong catheters which Barbara had (where the tube comes out of the chest and dangles, leading to dangers of damage and infection) this port terminates in a little box under the skin. They administer the chemo via a needle through the skin into the box. There is no opening in the skin, reducing the chance for infection. The port site was very painful after the procedure and for the night. The pain is gradually lessening, being worst when she makes certain movements, like washing her hands.
Barbara also had a CAT scan, so that the clinical trial can measure any changes to the tumors.
Barbara is still not driving. We've not yet replaced her car. Being dependent on me for her transportation is difficult for her - she likes shopping for food, and having me tagging along can be a drag.
Barbara started the clinical trial, taking 8 pills (480 Mg) in the morning and 8 pills in the evening. Within a day, the reaction hit: 16 trips to the bathroom in one day! She called the doctor and he told her to stop the drug. It took 4 or 5 days for her bowels to settle down.
We returned to Dr. Lenz, and he restarted the trial at a drastically reduced dose: 1 pill twice a day. We questioned if such a small dose could be of any benefit. He explained that the drug works on the stem cells in the body. Some people (including Barbara) are very sensitive to the drug. Given the sensitivity, the lower dose is still likely to work. This time the ill effects were mild. She had some increased neuropathy in her feet, and swelling of her ankles and lower legs. A few days later they started the Paclitaxel infusions, once a week.
We had been warned about hair loss. Well, three days ago her hair started falling out in big gobs. It was annoying for her to need a hair net to keep the hair out of food, clothes, the bed, and the house. Yesterday, at Norris, the directory of Volunteers took Barbara into the Image Enhancement Center, where they sell wigs, hats, breast forms, etc. for cancer patients. She gave us a free knit cap, and we bought a few other head coverings. Since most of Barbara's hair had already fallen out, the volunteer recommended cutting off the rest, to end the nuisance of hair all over everything.
So, this morning was the big event. I took my first-ever selfies, as we prepared for the event: before and about to do the deed with my sideburn trimmer. The final result is here. and here. Barbara is OK with the new look. Since she doesn't plan to enter any beauty contests, she "has bigger fish to fry". I felt bad about shaving her head, but most of the hair was gone already. I think that I feel worse than she does - I remember taking her to the hair salon just a couple of weeks ago.
The important thing is that the trial drug may be working. Barbara's CA19-9 level dropped over the last month from 65 to 58 (normal is 36 or below). It's not a big change, but we have hope.
Barbara has been struggling with the clinical trial drug. Her lower legs ballooned in size, and they are very sensitive. They did an ultrasound and found blood clots in both legs. Our hematologist switched Barbara from Xelota to Lovenox, a daily injection. There's not much research on interactions between Xelota and rare cancer drugs, and the effect of Xelota may be neutralized by the trial drug. Lovenox is the standard of treatment for cancer patients. Unfortunately, a subsequent ultrasound still showed some blood clots, and the Lovenox was increased to twice a day. The injections are painful, and Barbara must inject herself, since I have a tremor that makes me jiggle the needle.
Even with the clinical trial, the CA19-9 was bouncing around. So it's unclear if the trial drug is working. The side effects became unbearable, difficulty walking with the swollen, sensitive legs and feet; nausea; diarrhea; loss of taste, etc. It finally became too much to handle, and we (Dr. Lenz and us) made the decision to stop the trial. The plan now is to begin chemo this week: Gemzar infusions and a 48-hour 5FU infusion pump. Barbara has tolerated this regimen before, but our recollection is that it didn't reduce the cancer by much. But we're running out of choices, with both clinical trials failing, and surgery not an option. We plan to quiz Dr. Lenz about SBRT at our next appointment.
Barbara, Sherri, and I spend a wonderful weekend with Barbara's nephew Curtis and his wife Lena and son Antonio. They live in a semi-rural area outside Escondido, where one feels "out in the country". Lena cooked some fabulous meals - we felt like royalty. I had an astronomy evening with Antonio and my telescope. Curtis, Sherri, and I went for a hike Sunday morning; I learned just how out of shape I am, compared with those two animals! The weekend was a welcome change of pace.
Barbara has been having regular CAT scans, which are showing abnormal activity near her spine. We tried to have an MRI, but in spite of the promises made when she had the Nanostim pacemaker installed, the radiology department steadfastly refuses to perform an MRI with "any" pacemaker.
On August 1, Barbara was grocery shopping alone, and she lifted her shopping cart over a curb in the parking lot. Something snapped in her back with a loud pop. The pain was excruciating. I was called to the scene and took her to Norris where they did a CAT scan and an X-RAY. She had damaged her T12 vertebra, in addition to some pre-existing damage to her T8. She has a suspected cancer lesion around T8. She underwent a Kyphoplasty procedure, where the surgeon arthroscopically inserts a balloon into the vertebra and inflates the balloon to restore the normal shape of the vertebra. Then he injects cement into the vertebra to hold the shape permanently. The procedure went well, and the surgeon also did a biopsy of the suspected lesion at T8 - pathology confirmed that it is the cholangiocarcinoma. He did an ablation to destroy the cancerous tissue. We now have the first definitive evidence of the cancer spreading beyond the abdomen. This explains why Barbara spends so much time in pain.
We have an appointment this week with the back surgeon for an X-RAY of the spine to see if it is healing correctly. We have another appointment with an oncology radiologist to talk about the possibility of more SBRT focused radiation to attack the tumors on Barbara's spine.
Meanwhile, I am fighting my own battle with my heart. The ablation last September briefly cured my atrial fibrillation, but recently I have gone into continuous flutter. We're going to try one last ablation next month. I sure hope that it works and I can continue bike riding.
A lot has happened during my silence. I'll try to hit each topic.
Barbara has experienced swelling of her legs and lower torso from fluid retention. Our hematologist, Dr. Liebman, says that Barbara's veins are damaged from the blood clots. The lymph system, which serves as a backup, is overwhelmed. Barbara has been prescribed Lasix and Spironlactone - alternating between the two, since Lasix is hard on the liver.
Barbara's Pacemaker: Barbara got a certified letter stating that her pacemaker has a recall! [Not exactly the kind of news that one wants to hear] We met with Dr Doshi, and he explained that the Nanostim pacemakers were experiencing battery failures due to the battery drying out. The earliest failures are two and a half years after implant. Barbara's was implanted a year ago, but after she had her AV node disabled, she is totally dependent upon the pacemaker. Therefore, Doshi wants to install a new pacemaker, an MRI compatible model that would reside in her left shoulder in the normal place. He would then remove the old pacemaker since the MRI people refuse to do an MRI with it. The removal is no simple matter; since it is inside the heart, cardiac catheterization is required.
So, last Friday (two days before Christmas) she had the operation. They couldn't implant the new pacemaker just under the skin because Barbara's skin is so thin and fragile, so they implanted it under the muscle. They warned that the resulting pain would be worse, and they weren't kidding. Barbara almost forgot about her abdomen pain, the shoulder pain was excruciating.
Barbara was discharged the next day, and we had a delightful Christmas day at Sherri's. Sherri baked my favorite: Bastilla - a Moroccan dish. Mmmm! Michelle brought the salad and other stuff, and we all had a feast. It was another chance to see Brent and the grandkids Kanan and Jessie.
On Monday, Barbara noticed that her left chest and her left arm were black and blue see photo, clearly the sign of blood leaking under the skin. She was summoned to the hospital and admitted. Although the doctors were not particularly worried, they did a CAT scan and found a little fluid under the pacemaker site. They feel that it will correct itself, but ordered Barbara to continue withholding the blood thinner for a few more days.
Barbara's last CAT scan of her abdomen showed a small increase in the tumor on her spine. The liver tumors appear somewhat stationary. Dr. Lenz referred Barbara to Dr. Chen, who performed the spine repair, to see if he recommended any surgery or radiation. Dr. Chen is very thorough - he had obviously done a complete review of Barbara's case before coming in. He summarized his opinion: her cancer is indeed progressing, but slowly. This gives us time to act. His suggested plan:
Barbara continues with chemo. Yesterday, she had a one-hour infusion of Irinotecan, and they started a 46 hour infusion pump with 5FU drug. I will remove the pump Saturday morning.
Life continues - Barbara doesn't drive, so I do the errands and take her grocery shopping. She is unable to do any exercise, like her treadmill. But she does climb the stairs several times a day. She still enjoys cooking (and I enjoy eating her wonderful preparations). In the middle of all of her problems, she still spends significant time worrying about the welfare of others - this is the wonderful, caring woman I married.
Barbara slipped and fell last Monday. She hollered for help, and I found her on the floor in our laundry room, complaining that her left hip may be broken. I managed to get her up onto a stool, but there was no chance that I could get her into the car. I called 911 and the ambulance took her to the Glendale Adventist Hospital. An XRAY and a CAT scan showed two cracks in her pelvic bones. The bones are in place, so no surgery is indicated. She will just have to endure the pain for a few weeks until the breaks heal. After a night in the hospital, I brought her home. It's difficult for her to maneuver, since she can't put any weight on the left leg without terrible pain. This makes it tough to get her into the car for her medical appointments. It's even painful getting out of bed to use the bedside commode. Obviously, she can't cook now, and I'm not a cook, so meals are a problem. Michelle has helped us a lot, and has been by my side through much of this. She prepared some meals that I can heat up to keep Barbara fed.
On the cancer front: in spite of the difficulties, I got Barbara to her chemo appointment on Thursday. Michelle came and helped Barbara during the chemo, and brought Barbara home.
More medical appointments are coming up. We see Dr. Chen next week to discuss the possible radiation treatment. We also have another CAT scan scheduled to see if the chemo is helping to keep the cancer in check.
Brent is constructing two wheelchair ramps so that we can get Barbara from her hospital bed to the car - bless him, he's a saint. I borrowed a transfer wheelchair from Convalescent Aid Society, which has already loaned us the hospital bed, a bedside table, and the commode. They are a wonderful resource for people with medical problems.
After nursing her broken pelvis for a week, Barbara felt sharp pains in her chest. Fearing the worst, we drove to Verdugo Hills Hospital emergency room. They quickly found that she had some atrial flutter, but nothing life threatening. A chest XRAY revealed some fluid in her right lung. Suspecting possible pneumonia, they started her on antibiotics and admitted her for observation. The chest pains subsided, and they released her the next day, without really proving what caused the chest pains.
I am getting overwhelmed with the care giver duties. Boyd and Yvonne recognized my distress and stepped up to the plate. They spend a whole day visiting home health care agencies. Boyd is especially knowledgeable in home health care, since he took care of the parents of a childhood friend for many years. They brought me material from three agencies, and we set up an appointment with the owner of one. During that interview, we arranged for a care giver three times a week, allowing me to run errands, do grocery shopping, and get a little respite from the care duties.
Last updated on Sunday, 3/5/2016 at 1:00 PM
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