OK, do I just have chemo-brain, or is this exchange totally ambiguous? Really, let me know what you think!
With regard to whether my case seem to have enough risk of Central Nervous System (CNS) involvement to warrant the separate spinal (“intrathecal”) chemo:
Doc to Cliff:
After discussing your case in our conference, the conclusion was, bone lesions including the spinal lesions are
high risk for CNS spread. Therefore no need for spinal chemotherapy.
[Cliff thinks: hmmmm….if risk is high for CNS, why would that mean no need for spinal chemo…let’s clarify.]
Cliff to Doc:
To clarify: are you saying that doing spinal chemo would *create* a high risk of spreading the lymphoma into the CNS, and therefore the risk of doing IT chemo is *not* warranted?
Doc to Cliff:
No, im saying the risk of CNS involvement because of bone lesions is not high, therefore there is no indication for CNS prophylaxis with IT chemotherapy. Your Doctor should do a diagnostic spinal tap.
[Cliff thinks: wait, didn’t first email say that bone lesions are high risk for CNS spread? Is he now saying the opposite? Why didn’t he say anything about doing the diagnostic tap in the first place?]
Hey, no problem, I’ll just read some of these (and look for some more experts):
- http://annonc.oxfordjournals.org/content/17/6/920.full
- http://www.medicine.wisc.edu/~williams/cnslymphoma.pdf
- http://bloodjournal.hematologylibrary.org/content/110/1/29.full
Bottom line: this is one of big gray areas – I don’ t have the direct, sure signs of CNS involvement, but, believe me, you don’t want to wait and see if they pop up!
Cliphoma 
[…] and we can’t risk it crossing the “blood/brain barrier”. Want more? See this prior post on Intrathecal and […]
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You are hereby granted unlimited leave to reach out slap someone who is giving you conflicting, confusing or otherwise ambiguous information. Fair request to ask for clear and simple information. Good luck. You don’t have to slap them hard, just hard enough to wake them up.
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Clear as mud! That is my biggest take way from adventures in Cancerland. Dr. Welby and Dr. House have left the building along with all of their perfect knowledge and we are left with mere humans who have conflicting data.
Happy to hash it with you anytime my friend.
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Where was your patient advocate? You are smart to consult the Peanut Gallery, but it’s better if someone smart like Tracey is there. Then also one must refer to Hanlon’s Razor: “Never regard as intent that which can be understood as stupidity.”
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Ugh. Another opinion please!
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No, not chemo-brain, that is NOT clear, and you need to clarify!
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Maybe the doctor’s sources were not clear, I’d follow the trail of information.
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That was confusing. That Doc was a trick!
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