Andre: ADR+CSP

I was planning to write this update a lot sooner, but often I find myself mentally exhausted after coming back from LA following a treatment. Moreover, sometimes the first few days back home are at least as tough for me as being in LA, because the rebuilding after a round has its own set of challenges.

We left Wednesday 6/22 just before noon for our apartment, had lunch there and went to Cedars at 3PM for our scheduled 23 hour stay. After the labs and premeds Radhika received Cisplatin from 5-9PM, and then was continuously hydrated until 2PM the next day, since CSP can damage the kidneys and they want to make sure that nothing goes wrong. Around 2PM on 6/23 Radhika was then hooked up to the ADR fanny pack pump for infusion that was going to last the next 48 hours, and then we could go back to our apartment for the next 24 hours. Even though we got one of the nice rooms at Cedars (room 6 with a private bathroom) we were glad to be back in the apartment and take showers. Radhika spent a lot of time sleeping (as is usual for her during chemo), I cooked/read/swept the apartment, and we also watched around 20 hours of the great queen Deokman (having these DVD's is a great distraction that makes the round go faster.) We went back for labs on Friday 6/24 and Saturday 6/25, and on 6/25 she finished the ADR around 2PM without much incident.

As I wrote in my last blog, we had orginally hoped to go home on Friday already, because we didn't know the ADR would run over 48 hours. Apparently ADR is typically administered over 4 hours, just like CSP, but ADR can create real big issues with nausea, so that Forscher decided to stretch the ADR over 48 hours, since the nausea has been a consistent challenge for Radhika during chemo. That decision was fine with me, except that we only found out when we arrived on Wednesday (even though I had even called in on Tuesday to verify the schedule.) Communicating these things is not one of their strengths, as much as I like Forscher and Susan, and I honestly don't understand this, since they have been working together for years. One problem this created was the Neulasta shot Radhika was supposed to receive 24-48 hours after the end of ADR. Forscher's staff Pauline tried as hard as she could to get the shot scheduled for Monday in San Diego, but in the end it was just too short notice to get the insurance, pharmacy and nursing all lined up, which is EXACTLY what happened after the first round of ADR as well. At least now things are lined up so next time Radhika can get her Neulasta in San Diego, barring last minute scheduling issues. So we ended up staying another day in LA to take the Neulasta shot at 2PM on Sunday 6/26 (which gave me a chance to mop and pack up in the morning) and we left straight from Cedars to go back home that afternoon.

At this stage I have to give thanks to Bianca and Matthew for taking care of Mira much longer than we had anticipated. They said that since they have two kids Mira's age (Pablo went to Preschool with Mira, and Sinqi is just a year younger) this was not a big deal for them, but it was great comfort for me to know that Mira was well taken care off. Radhika was pretty much out of it when we were driving back on Sunday (she had received some IV anti-nausea meds for the journey, and we were hydrating her as well on the drive) so we had decided that it would be best if she would stay with Bianca and Matthew until Monday. Of course Mira was really excited that she got to stay "yet another day", because there is nothing more boring than being at home with two tired parents.

Radhika's recovery started off as expected: she went straight to bed on Sunday once we got home, and then on Monday it was nausea, fatigue, depression and a lot of acidity in the stomach. Tuesday was more hanging in there, waiting for it all to pass, and I was thankful that Linda Holt was able to stay for the day with Radhika, so that I could putter around the house and do some shopping. On Wednesday 6/29 Radhika's depression had mostly lifted (which is always a big relief), but nurse Laura who came for the dressing change and taking labs said that Radhika needed more hydration, since she didn't look well. I thought that a few more days of hydration would be the end of the round for us, since Radhika's labs came out OK: White blood cells at 6.6, which is in the range for a healthy person, and only her hemoglobin had dropped a bit, but that was low for her all along anyway.

Unfortunately, things didn't work out that way, because the fatigue didn't lift and the acidity kept getting worse, turning into regular vomiting on Friday. I called the nurses at Cedars that night and their advice, one of which was sit sleeping up, helped get us through the night. It was great that Mira had play dates set up (Thursday with Jillian Abreu and Pablo+Sinqi; Friday next door with Jacquelina; and then on Saturday Marie Thomas took her out) because she really didn't need to see this. However, when things didn't look like they were improving and Radhika started to develop a low grade fever I drove with her to Cedars on Saturday 7/2 afternoon. We had planned to drive back the same night, so on short notice we left Mira with Joe and Julie, the best neighbors anyone could hope! When we got to Cedars they took labs (all her blood counts were way low with the White's at a rock bottom of 1.0), started Radhika off on IV antinausea and antibiotics, and decided that it would be best for her to stay for observation (we again got a nice room with bathroom, since it was a slow night at Cedars), and a blood transfusion (her first after 4 months of treatment) the next morning. Mira was excited about yet another sleep over, even though she was a bit scared by the unplanned nature of this one.

Although Radhika was reluctant to go at first, the visit to Cedars did turn things around, and we were able to drive back again on Sunday 7/3. The IV antibiotics made the fever go away, and helped decrease the acidity as did the Zantac. Strangely enough the oral antibiotic she had to take at home increased her acidity every time she took them. Her labs on Wednesday 7/6 showed that her hemoglobin is back to normal (thanks to the transfusion), and that the Neulasta kicked the White's back up to 2.5 (apparently it is normal for them to bottom out 7-10 days after the end of a round, but that valley would be much larger without the Neulasta.) Most importantly her fatigue was slowly going away and the nausea stopped. Her platelets have dropped to 40 on 7/6 from 140 just 7 days earlier (most healthy adults are in the 150-400 range), but platelet transfusions are typically not given until it drops down to 15. Since platelets should renew themselves every 7 days or so that probably makes sense.


The biggest concerns remaining were the acidity and the low white count. Apart from the meds we made some changes to her diet to help with the acidity: fewer hard to digest vegetables, more soft foods, such as the vanilla flavored "Boost Plus" protein shake recommended by one of the nurses as it tastes OK and has a lot of calories, which was important since Radhika had also lost 6 pounds in the week she was at home. Radhika's diet remains a real moving target, since what she can eat and what is good for her keeps changing, with the only constant being that she should not have spicy/garlicy foods. For the white count the only thing we could do was wait and try to keep Radhika home, and away from infection. That also meant we moved Mira from Joe+Julie's back to Bianca's (Matthew was out of town) on Sunday 7/3, and she spent the 4th of July there too, and we only picked her up again on Tuesday 7/5 afternoon.

Things have by now normalized again for Radhika, and she can eat more or less everything again since yesterday without having to worry about acidity, even though we still try to be cautious. The dark mood that came back again this past week has also lifted. One positive development is that Radhika has not been taking pain medication (oral or a patch) for 6 days now, and yet she has no pain sensation. This is a great sign for the effectiveness of the chemo therapy, and it should also greatly reduce any constipation issues, so that there is also no more need for a laxative as of now. She also found a good colon hydrotherapist, Dona King, whose treatments have helped her get through the last round without any intestinal problems, other than the acidity, which is the side effect Radhika is focusing her efforts on now. Even on that front there are good news, since Ruth was able to recommend an accupuncturist who specializes on cancer patients, Christine Adamo: Radhika had two treatments from her already, and she believes that it is really helping her; there will also be treatments this week Tuesday and Friday to get Radhika ready again for the next round.

This brings us to the schedule for the next few rounds, everything of course being subject to change, since mouth sores or low lab results can always result in the schedule being pushed back : MTX 6 will start next week (Mo 7/18 or Tu 7/19), MTX 7 the week after (We 7/27), then there is 2 week break and MTX 8 (Mo 8/15), followed by MTX 9 (We 8/24). That last one we may have to reschedule somehow, because that day turns out to be Mira's first day of school. The week after MTX 9 would then be the looong Ifosfamide treatment (we need to stay 7+ days in LA), so that that will probably be only in September, but definitely not before the start of school for Mira. We will have to figure something out with Mira for the IFEX, but it seems so far away right now. At any rate Mira will stay the 3+ nights of MTX 6 with her friend from "way back" in Preschool, Jillian Abreu, and we are currently working on the plan for after that.