Back after a long interlude and Sue is feeling and doing fairly well. Which is not to say it has not been very eventful. In fact, I guess I have been waiting until we got to this point to talk about what has been going on and fill you in from A to Z.
Back in June, I left off as Sue was getting her lungs tapped from effusions that were a side effect of the last TKI/ targeted drug for CML and ALL Ph+ patients. And Sue was coming up to the next regular chemo for her spine/ CNS the following week. What ensued was what is the A in the A to Z of calamities.
Arachnoiditis. This is the horrible and painful reaction that sometimes happens with chemo in the spine. This time it was very bad. For several weeks, Sue could barely walk. Off and on again with steroids, finally we were sure it was arachnoiditis as opposed to anything else, so severe was the reaction. Sue was shuffling around in a walker and it took quite awhile, a month or two to finally get back to her normal pace (which is constricted still from the hip problems caused by the high dose steroids during the bone marrow transplant).
In that the TKI drugs had all all failed to get into her CNS (central nerve system) to protect against the brain relapse of ALL the previous and one had caused severe side effects, we had some hopes for an experimental drug. Thanks to the hard work of Sue’s doctor, Sue was able to get onto a study of one, based on a compassionate use allowance. The new drug might be able to be more successful getting into her CNS and saving her from difficult chemo treatments as well as continuing to protect the rest of her body.
We were excited for this opportunity and Sue began the new drug early in the summer. After a couple weeks on the new drug, Sue’s liver numbers indicated a major problem. Immediately Sue was put on a drug holiday so her liver could recover. Then it started all over with a smaller dose.
This time it went poorly again, The liver reacted clearly from the drug.
This was really bad news. The drug seemed to be causing a severe liver reaction. And none of the drugs Sue was on seemed like obvious candidates for causing this a part of a drug interaction.
Fortunately, the doctor combed over the drugs Sue was taking to specifically pin down if it was a drug interaction.
Z as in Zyrtec. Well, there was one drug, an over the counter one that Sue had been taking daily for years for her allergy symptoms. And so Sue immediately stopped taking Zyrtec.
After a couple weeks without either the new drug or Zyrtec, Sue restarted taking the new drug. Pretty nerve wracking. But after waiting awhile, the liver numbers stayed great, may be even better than before the transplant years ago. And now it has been about six months on the new drug with no liver problems.
Sue did get a body rash and now has chronic dry skin from the drug. This is a common side effect which patients just manage.
But the real question is whether, Sue’s doctor could confirm that the drug was effective in her CNS. Doing a test, in the fall, it appeared clearly that the drug was effective to a degree that might be sufficient. So it has been eight months since the last chemo in her spine and so far the brain tumor which had already shrunk to nothing, has not shown up in MRIs or spinal tests. Sue’s doctor has done another test to reconfirm the effectiveness.
In the midst of the drug study and ahead of schedule, the drug was approved in December by the FDA. Iclusig (known also as Ponatinib) was now approved for CML and ALL Ph+. Now it was a question of making sure not to have a gap in the medication as Sue left the study and started the drug as a normally prescribed medication.
This was a bit of a struggle of bureaucracy and computers being updated with the new drug. I had an inkling that it would take a couple months as did the very thoughtful folks at the hospital, so there was some wiggle room in those two months for the transition. After hours on the phone getting rerouted, given contradictory information, having the doctor waste time calling in to get misinformation and confusing... you get the point, finally it all came into place. Sue is now on the new drug without any gap during the handoff.
Yet another major side effect appeared last month. This time Sue’s blood pressure was way above normal. As a known side effect of this class of drugs, usually patients just change to another one. Sue does not have that as a choice. Sue has been on a blood pressure medication for the last two weeks and it seems to be working slowly to return her back to close to normal. Sue has also tried to be careful and worked to feel and get better. It has been a long road.
Thanks for all your patience as Sue went through the trial and I was not good with updates. I am planning to keep up reports on a more regular basis. And again thanks to all of you for your best wishes and support and also to the fantastic team of health care providers that are helpful beyond words.