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BMB tomorrow- Yikes!

Started by tiredblood , Jan 06 2016 08:57 PM

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29 replies to this topic

#1 tiredblood

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Posted 06 January 2016 - 08:57 PM

Look forward to it and dread it at the same time. I'm such a big chicken. Would welcome some encouraging words. : )

Oh, my plan is to wear my LLS t-shirt to the biopsy. It just seems appropriate.

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#2 Harper3994

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Posted 06 January 2016 - 10:14 PM

I had BMB to diagnose and then another one after being on Tasigna for 3 months. The first onc I saw wanted to do it in her office. I was very skeptical about this and called my PCP. He said absolutely not. Had it done in radiology at hospital and was under light anesthesia. Second onc is from Moffitt Cancercenter. In Tampa and ordered the 2nd one. They only do them under light anesthesia also. I had it done and was home within 2-1/2 hrs. I would not have it done any other way and my doctor agrees.

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#3 CallMeLucky

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Posted 06 January 2016 - 10:29 PM

I've had three, not fun but not terrible either. Good luck try not to stress it will be over before you know it.

Date - Lab - Scale - Drug - Dosage MG - PCR

2010/Jul - MSKCC - Non-IS - Gleevec - 400 - 1.2%

2010/Oct - MSKCC - Non-IS - Gleevec - 400 - 0.25%

2010/Dec - MSKCC - Non-IS - Gleevec - 400 - 0.367%

2011/Mar - MSKCC - Non-IS - Gleevec - 400 - 0.0081%

2011/Jun - MSKCC - Non-IS - Gleevec - 400 - 0%

2011/Sep - MSKCC - Non-IS - Gleevec - 400 - 0.00084%

2011/Dec - MSKCC - Non-IS - Gleevec - 400 - 0%

2012/Mar - MSKCC - Non-IS - Gleevec - 400 - 0.004%

2012/Jun - MSKCC - Non-IS - Gleevec - 400 - 0%

2012/Sep - MSKCC - Non-IS - Gleevec - 400 - 0%

2012/Dec - MSKCC - Non-IS - Sprycel - 100 - 0%

2013/Jan - Quest - IS - Sprycel - 50-60-70 - 0%

2013/Mar - Quest - IS - Sprycel - 60-70 - 0%

2013/Apr - CUMC - Non-IS - Sprycel - 50 - 0.036%

2013/May - CUMC - Non-IS - Sprycel - 50 - 0.046%

2013/Jun - Genoptix - IS - Sprycel - 50 - 0.0239%

2013/Jul - Genoptix - IS - Sprycel - 70 - 0.0192%

2013/Jul - Genoptix - IS - Sprycel - 70 - 0.0034%

2013/Oct - Genoptix - IS - Sprycel - 70 - 0.0054%

2014/Jan - Genoptix - IS - Sprycel - 70 - 0.0093%

2014/Mar - Genoptix - IS - Sprycel - 100 - 0.013%

2014/Apr - Genoptix - IS - Sprycel - 100 - 0.0048%

2014/Jul - Genoptix - IS - Sprycel - 100 - 0%

2014/Nov - Genoptix - IS - Sprycel - 100 - 0.047%

2014/Dec - Genoptix - IS - Sprycel - 100 - 0%

2015/Mar - Genoptix - IS - Sprycel - 100 - 0%

2015/Jun - Genoptix - IS - Sprycel - 100 - 0%

2015/Sep - Genoptix - IS - Sprycel - 100 - 0%

2015/Dec - Genoptix - IS - Sprycel - 100 - 0%

2016/Mar - Genoptix - IS - Sprycel - 100 - 0.0228%

2016/Jun - Genoptix - IS - Sprycel - 100 - 0%

2016/Sep - Genoptix - IS - Sprycel - 100 - 0%

2016/Dec - Genoptix - IS - Sprycel - 100 - 0%

2017/Mar - Genoptix - IS - Sprycel - 100 - 0%

2017/Jun - Genoptix - IS - Sprycel - 100 - 0%

2017/Sep - Genoptix - IS - Sprycel - 100 - 0%

2017/Dec - Genoptix - IS - Sprycel - 100 - 0%

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#4 scuba

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Posted 06 January 2016 - 10:35 PM

It depends ... if you get a pretty nurse - no big deal. On the other hand ...

Diagnosed 11 May 2011 (100% FiSH, 155% PCR)

with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein

Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate

6-8 grams Curcumin C3 complex.

2015 PCR: < 0.01% (M.D. Anderson scale)

2016 PCR: < 0.01% (M.D. Anderson scale)

March 2017 PCR: 0.01% (M.D. Anderson scale)

June 2017 PCR: "undetected"

September 2017 PCR: "undetected"

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#5 Trey

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Posted 06 January 2016 - 11:59 PM

Take your tunes and listen to Madame Butterfly arias turned up all the way. Either will make you scream.

Edited by Trey, 07 January 2016 - 12:00 AM.

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#6 Melanie

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Posted 07 January 2016 - 11:42 AM

I like the music idea! My approach is usually to get the techs talking about themselves. If I can keep them talking and engaged then the time goes faster and before long we're friends and usually you don't hurt your friends.

Dx - 05/2011; PCR: 15.04; Fish: 87% Slow responder due to pancytopenia. Current - Bosulif - Nov: 2012, Mar 2016 lowered to 300 mg. 07/16 back to 400 mg. Clinical trial drug, Promacta, Feb 2013, for low Platelets.
CyCR - Aug 2014, Positive for 1 chromosome Sep 2015. PCR: 12.77 in Oct, 2012 to 0.04 (MDA) in Mar, 2016. 4/2016 - 0.126 (Local lab (IS); 05/2016 - 0.195 (local); 6/2016 - 0.07 (MDA); 7/2016 - 0.03 (local) 9/13/2016 - 0.16 (MDA); 9/26/2016 - 0.31 (MDA); 11/2016 - 0.012 (local); 01/2017 - 0.24 (MDA); 04/2017 - 0.09 (MDA); Cytogenetics show der(1:7)(q10;p10)7 chromosome mutation. Repeat of Sep 2015. PCR - 6/2017- 0.035 (local); 10/2017- 0.02 (MDA)

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#7 Gail's

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Posted 07 January 2016 - 01:50 PM

I was afraid so took a buddy. Did it in the office. Very strange sensations with only momentary pains. More stressed from the horror stories I've heard than the procedure itself. Told my favorite jokes to keep it light. You'll be just fine.

Diagnosed 1/15/15
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

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#8 SUE

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Posted 07 January 2016 - 01:52 PM

I had one done before diagnosis. Onc assured me that it would not be a problem to it in his office. Actually, it was awful. Might have been onc's ineptitude. But if I ever have to have one again, I would insist on light anesthesia.

Sue

Dx April 2013, FISH 62, BMB not enough for PCR test; put on Gleevec 400;

August 2013, FISH 8.7;

Oct 2013, FISH 5.6

Stopped Gleevec Nov 2013 for 6 weeks due to terrible side effects; Jan 2014 started Sprycel 50mg;

Feb, 2014 PCR 6.8

May,2014 PCR .149

Aug, 2014 PCR .015

Nov. 2014 PCRU

March, 2016 went down to 40mg Sprycel

Oct. 2016 stopped Sprycel for a couple weeks due to concern about shortness of breath. Echo showed mild PAH.

Nov 1 2016 resumed Sprycel 20 mg daily

Dec 2016 PCRU

March 2017 PCR 0.020

May 2017 PCRU

Sept 2017 PCRU

Dec 2017 PCRU

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#9 Harper3994

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Posted 07 January 2016 - 01:57 PM

You are all very brave! I am the biggest "chicken" ever!

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#10 Dona_B

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Posted 07 January 2016 - 05:20 PM

So how did it go?

DX 1/14; Sprycel 100 Mg, liver toxicity; Sprycel 80 Mg; down to 50 Mg for 5 months. Numbers going up. Back to 80 Mg 10/16 (with 50s slipped in to use up) BCR/ABL: .0047 12/15; .0302 4/16; .0528 8/16; .084 10/16; .045, 1/17 back up on 80 mg Sprycel; .006, 3/17; .016, 7/17; Shingles 8/17

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#11 Buzzm1

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Posted 07 January 2016 - 05:44 PM

.. to bmb, or not to bmb ... that is the question

as I've said before, my first bmb, was my last bmb

I don't think it helped that my Onc at the time was maybe 4'9" and 70lbs.; it took her a lot of tries; I ended up feeling like a wet dishrag

however, if another bmb is absolutely necessary, give me a shot of Versed and put me under and I'll be good to go

**********

For the benefit of yourself and others please add your CML history into your Signature

02/2010 Gleevec 400mg

2011 Two weakly positives, PCRU, weakly positive

2012 PCRU, PCRU, PCRU, PCRU

2013 PCRU, PCRU, PCRU, weakly positive

2014 PCRU, PCRU, PCRU, PCRU (12/07 began dose reduction w/each continuing PCRU)

2015 300, 250, 200, 150

2016 100, 50/100, 100, 10/17 TFR

2017 01/17 TFR, 04/18 TFR, 07/18 TFR 0.0012, 08/29 TFR 0.001, 10/17 TFR 0.000

2018 01/16 TFR 0.0004 ... next quarterly PCR 04/17

At the earliest opportunity, and whenever possible, lower your TKI dosage; TKIs are toxic drugs and the less we take longterm the better off we are going to be ... this is especially true for older adults.

In hindsight I should have started my dosage reduction two years earlier; it might have helped minimize some of the longterm cumulative toxic effects of TKIs that I am beset with.

longterm side-effects Peripheral Artery Disease - legs (it's a bitch); continuing shoulder problems, right elbow inflammation. GFR and creatinine vastly improved after stopping Gleevec.

Cumulative Gleevec dosage estimated at 830 grams

Taking Gleevec 400mg an hour after my largest meal of the day helped eliminate the nausea that Gleevec is notorious for.

Trey's CML Blog - Stopping - The Odds - Stop Studies - Discussion Forum Cessation Study

Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt

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#12 tiredblood

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Posted 07 January 2016 - 08:05 PM

The lidocaine injections were not pleasant, but the aspirations, especially the first four out of six really hurt. The biopsy I guess it was wasn't so bad. Right now I feel like my sciatic nerve is tied up in a knot in my backside. They did a lot of poking though, so it stands to reason it should be sore. I had hubby video the experience for me. I certainly don't want another one unless it is absolutely necessary. Thanks for your support and encouragement.

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#13 Buzzm1

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Posted 07 January 2016 - 08:13 PM

The lidocaine injections were not pleasant, but the aspirations, especially the first four out of six really hurt. The biopsy I guess it was wasn't so bad. Right now I feel like my sciatic nerve is tied up in a knot in my backside. They did a lot of poking though, so it stands to reason it should be sore. I had hubby video the experience for me. I certainly don't want another one unless it is absolutely necessary. Thanks for your support and encouragement.

glad you made it through the experience tiredblood ...

when should we expect the video?

For the benefit of yourself and others please add your CML history into your Signature

02/2010 Gleevec 400mg

2011 Two weakly positives, PCRU, weakly positive

2012 PCRU, PCRU, PCRU, PCRU

2013 PCRU, PCRU, PCRU, weakly positive

2014 PCRU, PCRU, PCRU, PCRU (12/07 began dose reduction w/each continuing PCRU)

2015 300, 250, 200, 150

2016 100, 50/100, 100, 10/17 TFR

2017 01/17 TFR, 04/18 TFR, 07/18 TFR 0.0012, 08/29 TFR 0.001, 10/17 TFR 0.000

2018 01/16 TFR 0.0004 ... next quarterly PCR 04/17

At the earliest opportunity, and whenever possible, lower your TKI dosage; TKIs are toxic drugs and the less we take longterm the better off we are going to be ... this is especially true for older adults.

In hindsight I should have started my dosage reduction two years earlier; it might have helped minimize some of the longterm cumulative toxic effects of TKIs that I am beset with.

longterm side-effects Peripheral Artery Disease - legs (it's a bitch); continuing shoulder problems, right elbow inflammation. GFR and creatinine vastly improved after stopping Gleevec.

Cumulative Gleevec dosage estimated at 830 grams

Taking Gleevec 400mg an hour after my largest meal of the day helped eliminate the nausea that Gleevec is notorious for.

Trey's CML Blog - Stopping - The Odds - Stop Studies - Discussion Forum Cessation Study

Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt

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#14 Harper3994

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56 posts

LocationTrinity, Florida

Posted 07 January 2016 - 09:33 PM

No reason to go through that at all. It just does not make any sense to me and my doctors agree with me.

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#15 hannibellemo

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728 posts

LocationNorth Central Iowa

Posted 08 January 2016 - 12:36 PM

Always thinking, Buzz!

Pat

"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>

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#16 Buzzm1

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LocationSilicon Valley

Posted 08 January 2016 - 02:48 PM

Always thinking, Buzz!

For the benefit of yourself and others please add your CML history into your Signature

02/2010 Gleevec 400mg

2011 Two weakly positives, PCRU, weakly positive

2012 PCRU, PCRU, PCRU, PCRU

2013 PCRU, PCRU, PCRU, weakly positive

2014 PCRU, PCRU, PCRU, PCRU (12/07 began dose reduction w/each continuing PCRU)

2015 300, 250, 200, 150

2016 100, 50/100, 100, 10/17 TFR

2017 01/17 TFR, 04/18 TFR, 07/18 TFR 0.0012, 08/29 TFR 0.001, 10/17 TFR 0.000

2018 01/16 TFR 0.0004 ... next quarterly PCR 04/17

At the earliest opportunity, and whenever possible, lower your TKI dosage; TKIs are toxic drugs and the less we take longterm the better off we are going to be ... this is especially true for older adults.

In hindsight I should have started my dosage reduction two years earlier; it might have helped minimize some of the longterm cumulative toxic effects of TKIs that I am beset with.

longterm side-effects Peripheral Artery Disease - legs (it's a bitch); continuing shoulder problems, right elbow inflammation. GFR and creatinine vastly improved after stopping Gleevec.

Cumulative Gleevec dosage estimated at 830 grams

Taking Gleevec 400mg an hour after my largest meal of the day helped eliminate the nausea that Gleevec is notorious for.

Trey's CML Blog - Stopping - The Odds - Stop Studies - Discussion Forum Cessation Study

Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt

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#17 scuba

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1,044 posts

LocationHouston, Texas

Posted 08 January 2016 - 03:26 PM

For those who want to know what's going on at the other end of the bone marrow aspiration/biopsy procedure.

Here's a video from the technician's perspective:

https://www.youtube.com/watch?v=NkdsLHBCreI

warning: not for the faint of heart, young children or pets ... especially the biopsy part.

Diagnosed 11 May 2011 (100% FiSH, 155% PCR)

with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein

Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate

6-8 grams Curcumin C3 complex.

2015 PCR: < 0.01% (M.D. Anderson scale)

2016 PCR: < 0.01% (M.D. Anderson scale)

March 2017 PCR: 0.01% (M.D. Anderson scale)

June 2017 PCR: "undetected"

September 2017 PCR: "undetected"

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#18 kat73

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884 posts

LocationWashington, DC area

Posted 08 January 2016 - 03:44 PM

Wow. Thanks for this. I have always been curious, having never been subjected to one. I think I'll continue to pass, if possible! I salute all who have undergone this, with or without being conked out.

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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#19 Harper3994

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Posted 08 January 2016 - 06:03 PM

After watching that I will continue to be "conned out"! Thanks for making me 100 percent sure of that!

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#20 tiredblood

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Posted 08 January 2016 - 09:23 PM

glad you made it through the experience tiredblood ...

when should we expect the video?

Not sure I'll share my video with the world, but the one posted above is a good representation.

I never figured out where they put the heparin. Where did that go?

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.