Treatment schedule update

[posted by Predrag, notes from emails and phone conversations with Ed and Mimi, sorry if garbled]

Tuesday October 12

• The shunt insertion drain the excess brain fluid scheduled. If all goes well with the shunt insertion she will be transferred to an acute rehab facility in Manhattan. The date for her discharge to the rehab facility is not yet known. Ed and Mimi have prioritized 1) Rusk at NYU, and 2) Columbia Presbyterian. They did not have much information on which to base the choices, so if anyone has information about the quality of different Manhattan acute rehab facilities please advise Mimi Cohen (646-649-2162 home, 646-673-2656 cell)

Monday October 11

• Radiation cycle 1 completed, no further radiation planned.

Monday October 4

• Barbara cannot walk at all, she cannot talk, and nurses do not ask what she needs. She understands, but quickly stops listening. She eats little, and it is difficult to persuade to eat. Today she ate a very light breakfast, skipped lunch because of a procedure, and had refused to eat supper. She used to exercise 3 days a week, but now she does no exercise, and her leg and arm muscles are very thin. Ed's impression is that the spinal tap did not accomplish anything. The SK setup is to treat only the tumor, but not the whole person. Nurses are not keeping close eye on her, so if you would like to sit 3-4 hours by her side, let Mimi Cohen (646-649-2162 home, 646-673-2656 cell) know what days and times might work for you, and she'll try to work out a schedule to help out Barbara and Ed.

Sunday October 3

• Chemo cycle 1 completed, 1 month pause.

Monday September 26

• Barbara had radiation, chemo, 32/mg dexa (!), an EKG, a chest X-ray and a spinal tap today. Spinal tap, or a therapeutic lumbar puncture is a treatment to relieve increased intracranial pressure. It takes about 3 days for lumbar puncture site to heal. Doctors are planing to follow this up with a shunt which drains the excess fluid from the brain by diverting it to another place in the body.
  
  Sister Mimi says that Barbara had no complaints so far after the tap, and was a brighter this evening, probably due to the positive effect of the spinal tap.
  
  
  
  [Sara background notes, not Ed's text: Cancer Compass web page has a section on brain cancer, where both patients and caretakers post about their experiences. There are many reports about the effects of steroids. They are a crucial tool to control swelling, but they have very bad side effects. Caretakers report mood swings, personality changes, irritability, stubbornness. These symptoms seem to be clearly related to the steroids, as they decrease significantly when the dosage is gradually decreased. However, decreasing the steroids might not be an option for Barbara. She was on 6mg/day dexa (decadron) after the seizure, slowly tapered down to 3mg/day. As her speech was not improving, and her walking deteriorated seriously, Dr. Yamada concluded that the tumor was cutting off the blood supply and first raised the dosage up to 8mg/day, and then to 16/mg day. That is a very high dose. B now talks a bit better.
  
  
  The ventricles are spaces inside the brain, filled with cerebrospinal fluid or CSF. The ventricles connect with the space in the center of the spinal cord and with the membranes covering the brain (the meninges); the fluid can thus circulate around and through the brain and around the spinal cord. The CS fluid is mainly water with a little protein, sugar (glucose), some white blood cells and some hormones. A growing brain tumor can block the circulation of the fluid. The resulting increased pressure within the skull can cause symptoms. With some types of brain tumor, cancer cells can spread in the CSF, causing symptoms similar to meningitis - headaches and problems with sight and movement. The spinal tap is a safe procedure, with very low probability of something going wrong. It is preferable to going into the brain itself with a needle.]

Saturday September 25

• I am in B's room in the hospital. She is very tired, visitors tire her out. B cannot walk to the bathroom alone, needs assistance. Last week she was smiling, but ever since they doubled the steriods she looks unhappy. Doctors are considering a spinal tap on Monday.

Thursday September 23

• I am by B's side in Sloan-Kettering since I don't like leaving her alone here. Some people have dropped in for brief visits today and she seemed to enjoy that.

Wednesday September 22

• B fell this morning and she had a CAT scan and a neurological exam. The MRI showed fluid in the ventricles and Dr. Omuro is considering an operation with needle, or a spinal tap.

[Ed prefers not to have to deal with comments, but please feel free to comment to posts by Predrag]