BMB tomorrow- Yikes!
#21
Posted 09 January 2016 - 07:25 AM
#22
Posted 09 January 2016 - 09:10 AM
As I have said before, one should insist on "conscious sedation" Do not allow anyone to tell you differently. Frank
Depends entirely on the person. I dislike sedation and will take the discomfort of the lidocaine BMB with the fact that I can drive myself home immediately after the procedure.
#23
Posted 09 January 2016 - 10:19 AM
I am with Marnie, if I do not have to be sedated, I will not be. My BMBs went fine with a little adjusting me on the table, a little digging from the nurse, and a Xanax just to calm my nerves.
#24
Posted 09 January 2016 - 10:21 AM
I've had 2 so far - one with sedation, one without. The sedation used is much less than is used for colonoscopies or minor surgery. I was awake the entire time and remember everything. There was no pain at all. But I was not allowed to drive myself home even though I probably could have.
#25
Posted 09 January 2016 - 02:04 PM
I've had light sedation with both of mine. Would not do it with any less. I have serious panic attacks just hearing others talk about in the doc's office. Maybe I'm just a wimp, but I don't care. Will not have one without it.
Dx: 01 March 2011
Sprycel 100 mg per day since dx
MMR: July 2013
numerous side effects
Thankful for the gift of each new day, and try to live it to the fullest
#26
Posted 10 January 2016 - 12:22 AM
"On another note...
This is crazy. I finding myself hanging out waiting for the results to be posted to the patient portal just like normal people hang out waiting for the latest i-Phone to be available for purchase. The patient portal where I am a patient lists the date and time lab results will be posted."
I do the same thing when I've had labs. I like that it tells you the exact minute your results will appear.
#27
Posted 10 January 2016 - 01:00 PM
Back on BMB - I find myself contemplating how anyone ever came up with the idea to do it in the first place. What a mind! Reminds me of the old story of imagining the first guy who decided to try eating a raw egg . . .
Dx July 2009 on routine physical. WBC 94. Started Gleevec 400 mg Sept 2009. MMR at 2yrs. Side effects (malaise, depression/anxiety, fatigue, nausea, periorbital edema) never improved. Kidney issues developed because of Gleevec. Switched to Sprycel 70 mg in Aug 2011. Above side effects disappeared or improved. Have been MR3.5 - 4.5 ever since. Two untreated pleural effusions followed by one treated by stopping Sprycel Jan 2017. After 9 weeks, PCR showed loss of MMR; re-started Sprycel at 50 mg and in 3 months was back to <0.01% IS. Pleural effusion returned within a couple of months, same as before (moderate, left side only). Stopped Sprycel 50 mg for 12 weeks; pleural effusion resolved. At about a monthoff the drug, PCR was 0.03; at 11 weeks it was 2.06 - lost CCyR? Have returned to 50 mg Sprycel for 3 weeks, intending to reduce to 20 mg going forward.
#28
Posted 10 January 2016 - 03:28 PM
FISH 92%
BMB 9:22 translocation
1/19/15 began 400 mg gleevec
1/22/15 bcr 37.2 IS
2/6/15 bcr 12.5 IS
3/26/15 bcr 10.3 IS
6/29/15 bcr 7.5 IS
9/24/15 bcr 0.8 IS
1/4/16 bcr 0.3 IS
Started 100 mg dasatinib, mutation analysis negative
4/20/16 bcr 0.03 IS
8/8/16 bcr 0.007 IS
12/6/16 bcr 0.002 IS
Lowered dasatinib to 70 mg
4/10/17 bcr 0.001 IS
Lowered dasatinib to 50 mg
7/5/17 bcr 0.004 IS
8/10/17 bcr 0.001. Stopped TKI in prep for September surgery.
9/10/17 bcr 0.006
10/10/17 bcr 0.088
#29
Posted 10 January 2016 - 07:30 PM
I have had 2 already. One when I was first diag. in June 2014 and then another one in June 2015. I was put to sleep both times. I had it done in the radiology dept. at my hospital. It was same as having a colonoscopy. You don't feel anything, and I wake up just feeling fine. I am a big baby as well. Have you had one before? I am sure you will be fine. I would def. asked to be put to sleep though. I am having my 3rd on Jan. 18. Praying that all goes well for you.
#30
Posted 11 January 2016 - 10:58 AM
Gail's - LOL
Dx July 2009 on routine physical. WBC 94. Started Gleevec 400 mg Sept 2009. MMR at 2yrs. Side effects (malaise, depression/anxiety, fatigue, nausea, periorbital edema) never improved. Kidney issues developed because of Gleevec. Switched to Sprycel 70 mg in Aug 2011. Above side effects disappeared or improved. Have been MR3.5 - 4.5 ever since. Two untreated pleural effusions followed by one treated by stopping Sprycel Jan 2017. After 9 weeks, PCR showed loss of MMR; re-started Sprycel at 50 mg and in 3 months was back to <0.01% IS. Pleural effusion returned within a couple of months, same as before (moderate, left side only). Stopped Sprycel 50 mg for 12 weeks; pleural effusion resolved. At about a monthoff the drug, PCR was 0.03; at 11 weeks it was 2.06 - lost CCyR? Have returned to 50 mg Sprycel for 3 weeks, intending to reduce to 20 mg going forward.
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