Opportunistic Yeast Infection from Hell - Update on Robin as of 01/27/2008

It has been almost two weeks since Robin's infusions with Ixabepilone (chemo) and Zometa (to reduce or delay bone damage). At last writing (1/19/08), the antihistamines and steroids had worn off and the chemo sickness was in full swing. Robin was also ill from the flu-like symptoms of Zometa. I hoped that we were at the worst point and she would start recovering. I learned that was not the case.

Robin had not told me that a mild rash on her waist had become much more painful almost overnight. Saturday morning, I got her up to take a shower, because we had an appointment for her "cranial prosthesis" (a.k.a., wig). Robin had been wearing a piece of cloth around her waist to keep the rash dry, and when she removed it, she was bleeding profusely. The bathroom looked like an ax murder had been committed there. I got her into the shower and cleaned up the mess. When she got out of the shower, I sprayed on some Bactine-like spray, because she couldn't stand for me to touch it to apply ointment, and laid down some gauze and soft cloth as a bandage. It looked like a good solution to me.

The next morning (Sunday), I removed the bandages and this started the bleeding again because the gauze was stuck to the wound. I tried to talk Robin into going to the emergency room, but she refused. I couldn't figure out how to dress the wounds without touching them. I finally figured out what to do. We repeated the same procedure as before, but THIS time, I covered the cloth with antiseptic ointment. I blow-dried the wounds, and then placed the cloth on the wounds. By doing it this way, the ointment was applied without needing to rub it on, and now the cloth was greased so that it wouldn't stick.

Monday morning, the bandages came off easily and there was no bleeding. I told Robin that we needed to go to the doctor because the wounds, even though they seemed better, were beyond my vast medical skills. She called her Oncologist, Dr. McClure, and got an appointment with her nurse. The nurse thought it was bad enough to show the doctor, who exclaimed something like, "Oh My God!" when she saw the wounds. She said I was doing exactly the right things, but prescribed Silvadene cream instead of the antibiotic. She also wanted to arrange for Robin to go to a wound clinic. An appointment was made for Wednesday morning at the Advanced Wound Care Center at Bayshore Medical Center in Pasadena.

By Wednesday, the wounds were looking incredibly better. When we arrived at the wound center, we (actually, I, since Robin's vision is poor) had to fill out eight pages of medical forms; the most detailed medical history I've ever seen. We were then seen by a nurse who explained how the center operated, asked a few more detailed medical questions, had Robin sign about six or seven consent forms, and then prepared Robin for the doctor. Her doctor asked even more detailed medical questions. Robin said that the doctor now knew more about her medical background than her own mother did. He examined Robin and said that it appeared to be an "opportunistic yeast infection." He gave the nurse instructions which included taking pictures of the wounds. When he returned, the doctor had to debride the wounds, and he took samples for cultures. Another nurse came in to dress the wounds and instruct us how to do it at home, then she took five vials of blood for testing, and set up our next appointment for next Wednesday, January 30th. By the time we left the center, it was almost 1:00. We dropped off a prescription for yet another cream, and ate lunch. By the time we picked up the prescription, it was too late to go to work, so we went home. Robin was well enough to go to work on Thursday and Friday, and each day, the wounds have improved significantly.

By Sunday, the wounds appeared to be nearly healed, and Robin is feeling almost human again. HOWEVER, now her hair has decided it is time to go. Unfortunately, her wig has not arrived yet. She managed to get to church this morning with enough hair that no one seemed to notice, although I could tell. We are hoping the wig arrives tomorrow or Tuesday before the hair is gone. I don't expect Robin's hair to last much beyond that.

Well, that’s about it. In short, Robin seems to have gotten past the chemo sickness and "the opportunistic yeast infection from hell." She had to go to the wound center for help with the infection. Today, she started to lose her hair, but her wig has not yet arrived. Robin will see the wound doctor again this week, and she gets blood work in preparation for the next chemo. Her next chemo will be Tuesday, February 5th.

Please continue to keep Robin in your thoughts and prayers. And pray for speeding the UPS truck with Robin's "cranial prosthesis."

Our love to you all,

                  Larry and Robin (and John, of course)

Ixabepilone Started - Update on Robin as of 01/19/2008

It has about two weeks since the last update was posted. At that time, we had just learned that Robin's breast cancer had spread to other vertebra and to the nearby ribs. Since then, a lot has happened.

Dr. McClure ordered additional CAT scans focused on the area where the disease was found. They confirmed the previous scans, showing some cracks in the bones, although no lesions (equivalent to "tumors") were visible. We visited Dr. Mason, Robin's surgeon and, on the following Monday, the 8th, she got her "Power-Port" installed. This "port" is a small (about the size of four or five stacked quarters) fixture implanted under the skin of her chest. A catheter runs from the port to her heart so that the chemo drugs will get diffused quickly before they can damage the blood vessels. The port provides easy access for the chemo infusion. The nurses use a special needle that looks like a thumb tack to plug her into the IVs.

The insurance company was slow to approve the infusions of Ixabepilone. We didn't know why, but believe it was because it is a newly approved cancer drug. They wanted assurances that it was being used for the approved purposes and not for some "off-label" clinical trial. Robin asked for and received some help to get the insurance approval moving. Thanks to the help that she received, the insurance was approved the next day, and the chemo was scheduled for January 15th (Tuesday).

On Tuesday, we arrived at Deke Slayton Cancer Center at 9:00 AM, and by 9:30, she was hooked up and getting pumped full of drugs. After starting the IV, they pumped in some antihistamines and steroids to counteract the effects of the chemo. When these were done, the Ixabepilone was started, and it took four hours to empty the bag. They pump it in slowly so they can stop it if there is a reaction, and to minimize damage to the heart tissues. It so happened that it was also time for her third infusion of Zometa (zoledronic acid) for the protection and repair of her bones. So once the chemo was done, they started the Zometa. We finally left the cancer center at about 4:00 in the afternoon.

Robin seemed to be doing well on Wednesday and Thursday, but Friday was a different matter. By then, the antihistamines and steroids had worn off and the chemo sickness was in full swing. Added to that were the Zometa after-effects (flu-like symptoms- bone aches and alternating hot and cold flashes. It is now Saturday, and the symptoms persist. Robin showered and dressed to keep her appointment for her "cranial prosthesis" (wig). It should be ready by next week, so we are hoping her hair will last that long. Robin returned home to her chair as soon as possible after the appointment. The anti-nausea medications appear to be helping, but only while she is fairly immobile. I'm guessing that she will be better by Monday morning and will try to go to work.

Well, that’s about it so far. To sum it up, tests confirm the cancer has spread. Robin had her port installed and started her new chemo infusion, Ixabepilone. At this time, she is in the middle (hopefully, the worst) of the chemo after-effects.

Please keep Robin in your thoughts and prayers. If you want to do something more, send her a card of encouragement (write big and use dark ink, so she can read it) or give her a call some evening.

We send our love to you all,

                  Larry and Robin (and John, of course)

Results of Recent Tests - Update on Robin as of 01/02/2008

It has been almost two months since the last update was posted, and life has gone on. Robin has been through three 3-week cycles of the oral chemotherapy, Xeloda. The back pain has been constant, but manageable with Vicodin. Her vision has not improved since the radiation therapy, and might have gotten slightly worse. She has had two bone treatments by infusion of Zometa (zoledronic acid). The side effects are similar to a bad case of the flu, and last about two-three days. With all that going on, we survived Christmas, including our adoption of a small family (two children and a Mom (actually, probably, their Grandmom) who spoke no English). Shopping was difficult for Robin, with the back pain exacerbated by standing or walking for long, so she tried the "shopping scooter" at Target. It wasn't pretty! After taking out a rack of boy's coats with the scooter, she decided she would stay in the main aisle, and let me fetch things she wanted to see closer. Anyway, John came down from College Station, and spent a few days, we all went to Midnight Mass, and we celebrated Christmas with our Texas family, the Couvillions. It was a very nice holiday.

On the Friday after Christmas, Robin had new CT and bone scans performed. The appointment was at 6:30 AM, and we got home about 3:30 PM. What a way to spend your vacation!!! Today (January 2nd), we received the reports. The CT scan looked good, with nothing remarkable showing in the chest or abdomen. The bone scan was a different matter, though. The T11 vertebra still showed signs of cancer, and the cancer appears to have spread into several posterior ribs about at T9 and T10 on the left, and T10 on the right side. Additionally, there appears to be some activity in the T10 vertebra and possibly one or two other ribs, although this was not conclusive. Even without this additional involvement, the rapidity of the spreading indicated that a change in Robin's treatment is necessary, since Xeloda does not seem to be working.

We went to Robin's appointment with Dr. McClure this afternoon, armed with the results of the report, and we discussed the next steps we needed to take. She suggested (and we agreed) that more aggressive chemotherapy was needed. She told us about a newly approved chemo called "Ixabepilone" (or Ixempra™) that has been shown to be effective in treating aggressive cancers that have been "refractory" ("resistant" --- see, we learned a new word) to other standard treatments. So the plan is this:

1. Get a port-a-cath (Port) installed (again). This is fairly minor surgery.
2. Start infusions of Ixabepilone once every three weeks as soon as possible after port installation.
3. Obtain additional CAT scans focused on the area where the disease is indicated.

In the meantime, Dr. McClure prescribed slightly stronger pain medication, since there has been some additional pain experienced in the last couple of weeks. The first step is to add Ibuprofin to the Vicodin, and if that doesn't work, increase the Hydrocodone. Robin will need to play it by ear to find the right level that works.

The good news is that the cancer appears to be limited to the bone, and cancer in the bone is not lethal. Also, the new chemo, Ixabepilone, has been recently been approved for use in cases like Robin's, and it has been shown to be effective in treating aggressive cancers. The bad news is that the cancer has spread quickly, and cancer in the bone can be very painful. Furthermore, cancer in the bone indicates the spreading is by way of the blood, so other organs could be affected in the future. We will need to be vigilant and respond quickly if there are additional complications or if the Ixabepilone does not appear to be working.

Other minor news:

• John was accepted at Texas A&M. He'll start next week. We are officially an "Aggie" family.
  
• Larry received an "Employee of the Month" award for December. The Shuttle program has been keeping him busy and (generally) out of trouble.

Well, that’s about it. To sum it up, Christmas was great. The oral chemo did not seem to work, and the cancer has apparently spread to several ribs and possibly other vertebra. Robin will be prepared to start chemo infusions with a new drug, Ixabepilone soon. Robin's eyesight is not good, but we still hope for improvement. John's an Aggie, and Larry is… well, Larry.

As before, we ask you to keep the prayers and good thoughts going. At this point, the prayers are more important than ever before.

We send our love to you all,

                  Larry and Robin (and John)