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.
Last updated on Friday, 4/29/2016 at 1:00 PM
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