Stable once again
Today's MRI indicated that the tumor has not grown over the last month so tonight we begin another cycle of high-dose Temodar.
This has been quite a difficult month so we were very relieved to have news that the tumor is not advancing. At the start of the month Keith was extremely weak and had difficultly eating. We now see that a part of this is clearly related to the chemotherapy. We are discovering that the high dose Temodar is not as easily tolerated as the earlier low dose cycles - at the end of the 5 days, Keith is generally unable to get out of bed or tolerate any food. Recent history suggests that it takes the remaining 23 chemo free days to "recover" his strength and appetite. It seems that just as he begins to get back in the stride, we are ready to take in the next round. It is a common challenge - and one that most patients who have been through chemo can relate to.
In other news, over the last few months we have been tracking through a problem Keith has had with his shoulder - this problem predates our discovery of the tumor. Last week we learned that Keith has a large tear in his rotator cuff. We will be meeting with the surgeon on March 7 and will likely schedule a surgery in the coming weeks. This shoulder has been increasingly painful and has limited Keith's ability to participate in some useful activities - occupational therapy and qi jong to name two. We are looking forward to getting the shoulder resolved.
In the last month, we have also consulted a new acupuncturist. Ellen Lazares was recommended to us by a GBM survivor (5 years!) and we found that she has a wealth of knowledge/ideas/experience working with brain tumor patients. She has suggested additional therapies to consider - one which interests Keith is biofeedback. He has been very successful with guided imagery - so the biofeedback approach has some appeal.
We are also looking into the possibility of adding "DCA" to Keith's treatment program. (http://www.economist.com/science/displaystory.cfm?story_id=E1_RVQRSDG) While this may be one of those petrie dish cures that doesn't pan out in practice, the drug is relatively risk free and has already been approved for use in other diseases. Our oncologist is very interested - so stay tuned. If you haven't heard about DCA, there was quite a bit of press - and the armchair science is interesting as it implies a slightly new "view" of the cancer problem.
Finally, we continue our quest to optimize the medications. Yes, we have indeed accomplished a great deal - we have eliminated the steroids and reduced the Keppra to tolerable levels. We have waded our way through a lot of studies and found a good arsenal of supplements. Unfortunately, however, we have never been able to conquer one of the biggest challenges - the "break through" seizures. These are extremely unsettling for Keith and really present an emotional as well as a physical setback. The current strategy is to increase the dosage of existing medications - primarily Keppra and Topomax. We are also using Klonipin to help control seizures once they have begun - this drug is particularly effective in calming an "in process" seizure - but it carries a lot of "baggage" in terms of making him feel groggy. Unfortunately, all of these drugs have similar side effects - they dull the memory, interfere with balance and make Keith generally more tired and less alert. Topomax is affectionately referred to by bloggers as "stupomax" and it greatly impairs appetite. Keppra in large doses stimulates "anger"- bloggers call it the Keppra Rage. Optimally, in order to minimize the side effects, we are trying to find the lowest possible combination of dosages which fully control the seizure activity - we haven't yet found it.
This has been quite a difficult month so we were very relieved to have news that the tumor is not advancing. At the start of the month Keith was extremely weak and had difficultly eating. We now see that a part of this is clearly related to the chemotherapy. We are discovering that the high dose Temodar is not as easily tolerated as the earlier low dose cycles - at the end of the 5 days, Keith is generally unable to get out of bed or tolerate any food. Recent history suggests that it takes the remaining 23 chemo free days to "recover" his strength and appetite. It seems that just as he begins to get back in the stride, we are ready to take in the next round. It is a common challenge - and one that most patients who have been through chemo can relate to.
In other news, over the last few months we have been tracking through a problem Keith has had with his shoulder - this problem predates our discovery of the tumor. Last week we learned that Keith has a large tear in his rotator cuff. We will be meeting with the surgeon on March 7 and will likely schedule a surgery in the coming weeks. This shoulder has been increasingly painful and has limited Keith's ability to participate in some useful activities - occupational therapy and qi jong to name two. We are looking forward to getting the shoulder resolved.
In the last month, we have also consulted a new acupuncturist. Ellen Lazares was recommended to us by a GBM survivor (5 years!) and we found that she has a wealth of knowledge/ideas/experience working with brain tumor patients. She has suggested additional therapies to consider - one which interests Keith is biofeedback. He has been very successful with guided imagery - so the biofeedback approach has some appeal.
We are also looking into the possibility of adding "DCA" to Keith's treatment program. (http://www.economist.com/science/displaystory.cfm?story_id=E1_RVQRSDG) While this may be one of those petrie dish cures that doesn't pan out in practice, the drug is relatively risk free and has already been approved for use in other diseases. Our oncologist is very interested - so stay tuned. If you haven't heard about DCA, there was quite a bit of press - and the armchair science is interesting as it implies a slightly new "view" of the cancer problem.
Finally, we continue our quest to optimize the medications. Yes, we have indeed accomplished a great deal - we have eliminated the steroids and reduced the Keppra to tolerable levels. We have waded our way through a lot of studies and found a good arsenal of supplements. Unfortunately, however, we have never been able to conquer one of the biggest challenges - the "break through" seizures. These are extremely unsettling for Keith and really present an emotional as well as a physical setback. The current strategy is to increase the dosage of existing medications - primarily Keppra and Topomax. We are also using Klonipin to help control seizures once they have begun - this drug is particularly effective in calming an "in process" seizure - but it carries a lot of "baggage" in terms of making him feel groggy. Unfortunately, all of these drugs have similar side effects - they dull the memory, interfere with balance and make Keith generally more tired and less alert. Topomax is affectionately referred to by bloggers as "stupomax" and it greatly impairs appetite. Keppra in large doses stimulates "anger"- bloggers call it the Keppra Rage. Optimally, in order to minimize the side effects, we are trying to find the lowest possible combination of dosages which fully control the seizure activity - we haven't yet found it.
posted by Keith and Kathy | 7:29 PM
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