Dagboek van Philippa/ Philippa's diary
Email: philippa@rdenhollander.nl                                   Last update: 14-06-04 21:47.







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June 13th 2004

Tonight, Sunday, we find ourselves on the eve of the last intensive treatment period. This final block called “re-induction” takes a total of 7 weeks and is the most rigourous so far; it is intensive on two fronts, firstly because the dosage level of the medication is higher than Philippa has had so far and also because the frequency and combination of treatment is tougher. It is always a nerve racking experience each time she starts something new because you never know what to expect especially when you have had the experiences we have had to deal with. Some of the medication is new and some we have seen before but the dosages of the known ones is higher this time. Before I go into detail about the next 7 weeks I will take a moment to look back at the last block.

Philippa started the second block of treatment about 6 weeks ago, this treatment is designed to clean and treat the central nervous system. The base drug is called MTX or Methotrexaat and is given in a 24 hour intravenous drip. In order to protect the kidneys and the liver, Philippa was taken in the day before for hyper hydration when she is hooked up to an intravenous drip of saline and glucose to saturate her body with water and get her organs working at maximum capacity. The next day the MTX drip is started and two hours later Philippa is given a spinal injection with a cocktail of drugs called a Triple; just as before this is excruciatingly painful and she has to lie flat for two hours afterwards to ensure that the drug goes to her brain and to prevent ill effects from the difference in spinal pressure. Thank goodness they administer the memory loss medicine to prevent her remembering how painful it was. The next morning the MTX is in her body and the process of ensuring that her urine remains at a constant pH begins, this is controlled with sodium bicarbonate via her IV drip and her fluid intake is also kept artificially high. The next morning a blood test determines whether she has a sufficiently low level of the MTX to go home. Philippa had a total of 3 of these treatments and came through each of them remarkably well. Although she has a minor liver disfunction after the first treatment, this was back to normal by the time she was due for the second treatment. After this CNS block she was given a week and a half to recover and we have just had a medicine free week, the last in a very long time!

Tomorrow Philippa starts back on the Dexamethason (Dexa) but in a higher dose. The dosage levels are determined by the fact that this is a medium risk protocol (treatment schedule) instead of a non-high risk protocol. The last level was 4.5 mg a day and this time it is 7.5 mg a day. How this will affect Philippa we have no idea but suffice it to say that she was crabby, emotional and very, very, very hungry on the lower dosage – most people say “Hungry ? How bad can that be?” Well her record was 7 slices of bread for lunch in one sitting. That’s how bad it can be! The Dexa is daily for 3 weeks at full strength and is then reduced week by week so that she comes off it gradually for another 3 weeks. On Wednesday this week we are due in the AMC hospital for several reasons, the first is a broad spectrum blood test to check all of her blood values before the major treatment begins, the second is to do a heart ultrasound to check the heart function in connection with one of the medicines she is due to receive. This can have an adverse effect on the heart and so they always check in advance to see whether any problems already exist and also to have a reference point should anything happen. After this has been done we will go to see the oncologist to have a talk about what we can expect in the first part of the re-induction treatment. Then Monday June 21st Philippa goes into hospital over night for the first of a combination treatment with Aspiraginase and Adriamycine, the second of these drugs is the one that can affect the heart, the first she has had before.

During her last stay in hospital René spoke to the oncologist who told him that she had sent some of Philippa’s tissue to other anatomical pathologists who had informed her that they had found “ T-cell markers”. I don’t fully understand what this means yet but it has implications for her Central Nervous System. In order to achieve CNS protection the oncologist has added two extra treatments to her schedule from a protocol that is still in a developmental stage. If you consider that the prognosis has improved from 5% recovery for acute lymphatic leukaemia in 1972 to above 80% today then it is understandable that treatment is constantly being developed.  Although it means that Philippa’s treatment is even more intense we are glad and grateful that the oncologist is so careful and does not believe in taking any risks.

At the moment it looks as though we will be finished with this block at the beginning of August and then Philippa starts the maintenance treatment. Until then we will be very busy trying to keep everything as normal as possible. I will try to keep you up to date but judging on past performance I hope you will bear with me. Until next time...