4 replies to this topic

[ritan/]

so, i'm mostly just venting/looking for sympathy, bluntly. a year ago i started gleevec and so far it has not worked fabulously. my test results have been sitting above CCyR and the most recent one is higher than the one i had last january, 3 months on gleevec. i'm going to a new onc on nov. 28. that was the first date she had available. but i'm just scared. i know it's mostly silly to be afraid, it's not like my fear makes anything better, but the unknown sucks.   i'm headed for a new onc because my local non-specialist onc insisted in spite of the test results that i should just keep taking my current dose of gleevec and refused to even discuss sprycel because the on time he had prescribed that the patient had taken it for one week then refused to take any more. (gotta love weird anec-data stuff like this). anyway.... i think i should probably change drugs as ever oncologist i've spoken to or showed my information to has suggested that gleevec was the wrong choice for me from the beginning. (i suspect because my health situation, while still chronic, was obviously more impaired than typical. for example my spleen was so large it had almost completely filled my abdominal cavity, touching the bottom of my pelvis and extending several inches past my naval on my right side.)   so anyone else having a scary month?

[PhilB]

Sorry to hear you're having a bad time, and sympathy and venting is what this place is for (as well as information and scatalogical humour).  A change of oncologists is definitely indicated based on the symptoims displayed by the current one -  who sounds like he might be somewhat deficient in the brain cell department.  A change to another drug also looks a lot like your current onc ie a no brainer.  If Gleevec hasn't got you to CCR in a year it would seem silly to ignore the other tools in the locker. 

And yes, I know just what you mean about scary months.

[ritan/]

yeah, my current onc is a doufus. he insists that almost all of my side effects are not related to gleevec even tho most are listed as common side effects of gleevec. (and when i took a 7 day drug vacation in august they completely went away). i think he just has no idea what idea what he's doing. his specialty is palative care, and he seems to think that if it isn't actively killing me right now i should just quit complaining. so i have regular oddities that he just won't deal with so i've quit telling him about them. i went to a Living Well with CML seminar, and everyone on the panel said that we shoudl be talking about all our health issues, and that was part of why i decided to change.

[Marnie]

I am on my 4th oncologist.  Only one of mine was a doofus. . the others just didn't feel right.. .didn't have the communication style that worked for me.  It's a little awkward to switch docs, but you need to find an onc that works for you.  You are paying for his services, so you need to be sure that you get what you are paying for each time you see him/her.

Marnie

[ritan/]

yes. i felt uncomfortable from the beginning with this onc. but he has recently shown his lack of understanding of CML. he just doesn't seem to get it. he keeps saying that gleevec may act more slowly, but that there is no evidence that getting to CCyR faster is better, altho as far as i can tell and from the CML experts that i have spoken to, it is clear that all the evidence is that. that the faster you get there, the better off you are.