Test Results and New Course --- 02-27-2011

In the last Blog entry, I reported that Robin's scans gave mixed results. Some of the data showed that the Cancer had spread and worsened in some places, and some showed no change since the October scans. Robin's oncologist at M.D.Anderson wanted MRIs to get better images of the bone damage. However, because of extreme claustrophobia, Robin must be anesthetized (knocked out) before each of the two required MRIs. Unfortunately, the requirement for anesthesia causes schedule delays of six to eight weeks. Robin's doctor felt it would not be prudent to wait that long, so he ordered CT Scans instead. We received the reports this week.

The bad news is that the cancer has grown in places where it was before, and it has spread into new bones. This was not a great surprise since Robin has been experiencing increased pain and new pain in new places. Apparently, the hormone therapy that Robin has been using (Femara) was not effective against her cancer. This is distressing because Femara has none of the nasty side effects of the other Chemo treatments that Robin has used in the past. An additional issue is that, as more bone is destroyed by the cancer, Robin's ability to produce blood cells (such as those needed to fight infection) is decreased, making her more vulnerable to infections.

The good news is that there is no sign of cancer growth in the soft tissues, where it spreads much faster. In particular, even though the cancer is in Robin's skull and vertebrae, there is no sign of cancer in the spinal cord or brain tissues.

The doctor discussed various options with us. He said that Robin has been treated with almost every type of Chemotherapy that is effective for breast cancer. He discussed one, Navalbine®, also called Vinorelbine (generic name), that he did not believe Robin has used. It advertises all the nasty side effects of the other Chemotherapies (hair loss, nausea, reduced blood counts, weakness, etc., etc., etc.), but the doctor said that Navalbine is generally "well-tolerated" (in English, this means that maybe she won't loose ALL her hair). Robin will start these treatments on Monday, 2/28/2011. She will get an infusion of Navalbine every week and will see her oncologist once a month. Assuming Robin can tolerate it that long, after three months, they will repeat the CT and PET Scans to see whether there have been any changes. Robin also needs to get Zometa® (zoledronic acid), which strengthens the bones and slows the spread of cancer in the bones. Because both of these are standard infusions, Robin can receive the infusions at the M.D.Anderson satellite office in Clear Lake (near NASA). This is certainly more convenient than downtown, and the parking is free!

If the Navalbine doesn't work, or if Robin cannot tolerate it, she may have only Phase I clinical trials available to her. (There are four phases; a Phase I trial tests if a new treatment is safe, finds the best way to give the treatment, and determines if the cancer responds to the new treatment. See clinical-trials for more information about clinical trials). The difficulty with clinical trials is that you must meet the trial criteria, it must be administered downtown, you have many more appointments because they want to gather information as you are using the medicine, and you don't know whether it might work or not. Of course, if that's all you've got, what's the alternative? Well, Robin's not ready to stop fighting.

After our meeting with the oncologist, Robin had an appointment with Supportive Care. Of course, there was a three hour "layover" between appointments. When the appointment was scheduled, Robin was told we wouldn't have to wait, but they were WRONG! The wait gave us time to talk about the test reports, but it was a long wait. Once we got in, we saw a nurse, a person doing a study about sleep issues, a doctor who specializes in Supportive Care, and a social worker. Every one of them was obviously very compassionate, focused, and helpful. They took their time with Robin, listened carefully to what she said, and made suggestions for improving Robin's quality of life. When Robin talked about her support community (That's YOU!), they commented on the quality of Robin's support, and how important that support is. At one point, Robin was telling the social worker that sometimes she felt "useless". The social worker gave Robin some new things to consider, but she added, even if there was nothing else, Robin shows us all how to live life in the face of incredible adversity. She said, "In spite of everything, you get up, dress up, and show up for life, every day." (She was on a roll, so I didn't stop to tell her that Robin doesn't get dressed up every day!)

Thank God for all your prayers, concern, and support for Robin. It is these, and God's Grace, that allows Robin to maintain her positive outlook, in spite of her many difficulties. I wish you could see her face when I read cards to her, or when she gets a call from one of you. I wish you could hear Robin's voice when she tells me about visitors. It is clear that she can feel the love, and it lifts her spirits. Robin has been battling this degenerative disease for six and a half years, and many of you have been actively supporting us from the outset. There are no words that are adequate to thank you for your gifts of love and support, especially for persisting so long. I just hope you know how much we appreciate you, and know that we pray for you constantly. Please continue to keep Robin in your thoughts and prayers as she continues to fight on.

Love and Blessings to you,

                  --- Larry, Robin, & John

Ambiguous Test Results --- 02-13-2011

It has been a little over a month since the last update. Shortly after the last entry, Robin caught a respiratory ailment from me; apparently something very contagious, since everyone at the office and at church seemed to have been suffering from it around the same time. Of course, with Robin, it isn't simple, so while her body was fighting bronchitis, she was attacked by two other opportunistic infections. As a result, she was very sick throughout January, and had to cancel her tests on January 21st. After several rounds of antibiotics, Robin turned the corner and started improving. She is past the bronchitis, although she is still fighting some of the secondary infections.

On Superbowl Sunday, since Robin couldn't go to the party, the party came to Robin. John and some of our close friends came to the house for fun and food. The Pittsburgh Steelers let Robin down, but her friends didn't, and she had a great time.

On Tuesday, February 8th, Robin had tests done at M.D.Anderson. Her first test was at 7:00 AM, and to get me ready and get Robin ready to leave by 6:00 AM, I had to get up at 3:00 AM. We arrived on time and started with the preparation for bone scans at 7:00. Because of insurance issues, the schedule was changed the week before. Because of the late changes, to get all the tests done in one day, Robin's tests were spread all over the MDA facility. Robin could not get into the golf carts, so Connie (Robin's friend and attendant), and I had to push her wheelchair all over the hospital. My pedometer said we walked three miles that day, and my aches and pains the next day agreed with that. Anyway, it was an all day affair. Robin couldn't eat before any of the tests, so she was starved by the time we got home. By the time she was fed and settled in bed, it was 6PM and I was beat!

On Thursday, February 10th, we went to see Robin's oncologist at MDA for the test results. Unfortunately, because it is so far away and they are slow to get test reports on the patient's webpage, we could not read the reports ahead of our meeting. (We might delay our follow-up next time so we CAN read the report before the meeting. We feel very strongly about how important this is!) The doctor said the reports gave a mixed message. There were some bone lesions that showed almost no cancer activity, but there were other places where the lesions doubled in size. There were also new bones that appeared to be affected, including the skull. This was very disturbing to us (especially Robin). The doctor said that MRIs are necessary to resolve the ambiguities, and to determine if there are any problems from the larger lesions. In particular, the growth can cause pressure on the spinal cord, which can cause other serious problems. Radiation treatments can reduce the swelling and relieve the pressure. It sounds like this is the real reason for MRIs.

Unfortunately, Robin requires general anesthesia for an MRI, and it takes over a month to schedule two sessions, each ten days apart. The doctor seems to think that's too long to wait, so I think he's considering CT Scans, instead. CT Scans do not provide nearly the same quality of picture, but Robin doesn't require anesthesia, and they can be scheduled soon. I expect we will get them done and get the results before the end of the month. I'll post an update when we get the reports.

We continue to thank God for your prayers, concern, and support for Robin. It is not possible to thank each individual, but we do think of you often and include you in our prayers. Please continue to keep Robin in your thoughts and prayers. Robin could not continue the fight without the love and support she feels from you. And pray also for all those lives affected by Cancer. We just lost a friend, Bill O'Rear, to Cancer, so we are much more sensitive to the effects on the patient and family.

Love and Blessings to you,

                  --- Larry, Robin, & John