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Bone Marrow Biopsies: How many have you had?

BMB CML remission Bone pain

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#21 lanadal

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Posted 24 February 2015 - 01:29 PM

I've had 6 since diagnosis, but none in the last 6 years.  At OHSU they feel that PCR gives the information needed except for a BMB after diagnosis and perhaps another if your "numbers" go way up and they are looking at changing you to another drug. So glad they have changed policy.


My facts: 

Diagnosed 2003 and have taken Gleevec 400 mg until recently. I am now taking 200 mg and will go have PCR testing every three months to see if all stays relatively stable. Have bounced between PCRU, PCR "weak positive", and .005 ever since.  Had a brief rise in PCR in 2005 for which I added Interferon (Yuck!) for 6 months which sent me back to previous levels and left me with neuropathy.


#22 Dona_B

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Posted 24 February 2015 - 08:36 PM

Thank you all for your imput. I now have an argument against it.


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


#23 cleocans

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Posted 25 February 2015 - 11:30 AM

I have had one at diagnosis, July 2011.  Just moved and started with a new oncologist and do not need one.



#24 Kittywatkins

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Posted 25 February 2015 - 03:42 PM

I had 2. One at diagnosis and the second I have no clue why he wanted it. First one I almost passed out. Even with the numbing. The second he assured me it was going to get better. And needless to say I screamed bloody murder!!! I do have fragile bones and was very low on vit d. But I will never want another unless I'm being put under! I'm breaking out in a sweat just thinking about this.

#25 TeddyB

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Posted 25 February 2015 - 05:26 PM

4 the first year, then none after that. Guidelines here states its not needed after MMR has been reached and it is not needed again until MMR is lost.



#26 Dona_B

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Posted 26 February 2015 - 01:04 PM

Kitty, I don't blame you. That sounds like a horrible experience.


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


#27 Dona_B

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Posted 26 February 2015 - 01:07 PM

Well the mystery of another BMB biopsy is solved. Onc. says he needs it to see if there is any more Philadelphia chromosomes. CCYR remission, is that what it's called? Any way I've achieved the first h---something remission. Really need to read up on all this again and get my words right.Anyway celebrating.


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


#28 Frogiegirl

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Posted 26 February 2015 - 01:47 PM

Just two. One the day cml was confirmed at my second opinion appointment. ...and another like 7 months later. Both were not good. Called the Dr performing it a naughty word. Told her not to look or say hi to me if she saw me in the halls of the cancer center....my mom was sooo embarrassed. She found me in the hall at my next appointment and asked if we were still freinds.....we hugged. Lol

Diagnosed Oct 2013 Started 600mg of Tasigna  on Nov 4th. Lowered dose a few months later to 300mg due to side affects stayed here declining PCR until March 2015 small jump from 0.0072 to 0.0083 scarred my doc into full dose of Tasigna again 600mg(been miserable since) but reached PCRU 06/15/2015(next test) and have been there ever since. Hoping to have another little one. I have the support of my doc to go off anytime, just scared to jump. might go two years PCRU but he said it wont make much of a difference. I just figured I could possibly go into a trial while preggers if I got the two years behind me.

Nov 8th 2017 went off Tasigna

Dec 1st PCRU off TKI

Jan 5th PCR Detected .0625

Feb 1st PCR Detected .7815

Added 8-6 grams Curcumin daily in Feb

March 3rd PCR Detected 3.2646 YIKES!

 stopped trying for baby after February reading. will start new TKI march 16th 2017 (Sprycel)

FYI I'm not done trying for my last little one.


#29 Gail's

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Posted 26 February 2015 - 02:56 PM

I'm missing something here. If a BMA enters the iliac crest to collect the bone marrow, isn't that hole in the bone as likely to cause bleeding issues as much as taking a bone sample??
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

#30 scuba

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Posted 26 February 2015 - 03:07 PM

 A BMB is useless after CCyR / 2 log reduction PCR (1.0% IS) / zero FISH. 

 

Not quite true. If one has abnormalities such as Trisomy 8 or Monosomy 7 - then even if they have zero FISH or low PCR, they should still have a BMB once a year to monitor the bone marrow. If the only abnormality at diagnosis was CML - then your claim of BMB uselessness is correct.


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"


#31 Dom

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Posted 26 February 2015 - 03:24 PM

I'm missing something here. If a BMA enters the iliac crest to collect the bone marrow, isn't that hole in the bone as likely to cause bleeding issues as much as taking a bone sample??


I'm the one who brought that up. The answer is, I just don't know enough about these issues. All I know is that the hospital administrators, not the doctor, insisted on it. And at the end of the bma, I did not have nearly the pain that I was warned about. Could be a case of administrators just pushing their weight around.

Diagnosed in February 2014. Started Imatinib 400 in April.
2014:     3.18     0.91
2015:     0.22     0.16     0.04     0.55
2016:     0.71     0.66

(Started Imatinib 600 in April 2016)
2016:     0.42     0.13     0.45
2017:     0.17     0.06     0.10     0.06     0.34


#32 lplaskin

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Posted 26 February 2015 - 03:27 PM

I was diagnosed with CML 8/2009.  I have had 4 BMB from my left upper buttock and they seem to be worse each time.  My last one was 3 weeks ago (2/2015) and it was VERY painful.  I still have pain on that side from a back injury (9/2014) and from the last BMB done at the end of 2013.  The dr numbs the soft tissue, but unfortunately he can't numb the bone.  I wish he would use the PCR test as the definitive test, but I have anemia and a high platelet count from some unknown reason.  I was on Gleevec initially, but was changed to Sprycel, about 2 yrs in.  The dr thought the Gleevec was causing my very low H&H and anemia.  However, I am still have a low H&H (though better than on Gleevec), with a very low iron count and high PTT.  He felt that a BMB would tell, perhaps, the reason these for these irregularities, rather than for a diagnosis of recurring CML (though it would be helpful to know this).  The BMB didn't really answer anything other that I'm still in remission.  I think I will refuse further BMB; he can use the PCR as the definitive test.  As for the anemia, it remains, with no explanations.  I'm having my 4th round of iron infusions, that don't seem to be helping (iron supplements and diet also don't help).  I think I will refuse the next round.  As for the PTT count, it is slowly rising.  The dr says he and the pathologist are baffled by the anemia and fluctuating PTT. The BMB showed adequate iron stores, but the blood work shows anemia??Anyone experiencing the same problems?   Thanks, Leslie :wacko:



#33 lplaskin

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Posted 26 February 2015 - 03:32 PM

I'm missing something here. If a BMA enters the iliac crest to collect the bone marrow, isn't that hole in the bone as likely to cause bleeding issues as much as taking a bone sample??

I have had 4 in the back left hip and the last 3 have resulted in bleeding, leading to a large mass of blood in my lower back that is still painful years later.  Had a BMB there this month---OUCH!!!!!!  No More!!!!



#34 Dona_B

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Posted 26 February 2015 - 05:04 PM

Leslie,

I never knew a BMB showed iron stores. Learn something new everyday.

 

Something to think about... have you taken a lot of antibotics? Eat a lot of processed and/or sugary foods? Have mercury fillings? Fungal infection on a toenail? (Btw, I'm not a doctor, just a patient who reads and is on the internet way too much looking for a new magic cure.) The reason I ask, and it's a fear of mine that iron supplements can feed candida and make it stronger. The cure for candida is an almost impossible diet eliminating processed foods, sugars, wheat and removal of mercury fillings. Unfortunately the medical community is a little slow making the connection. Another cause of anemia (with apologies to the men on the forum) is heavy periods which anemia can just continue to make things worse in an endless loop.

 

If you don't think I'm crazy and would like to learn more, read "The Gut and Psychology Syndrome" by Natasha McBride Cambell. A lot of the info is directed toward parents of autistic kids but it also pertains to candida.


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


#35 lplaskin

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Posted 26 February 2015 - 07:10 PM

Leslie,

I never knew a BMB showed iron stores. Learn something new everyday.

 

Something to think about... have you taken a lot of antibotics? Eat a lot of processed and/or sugary foods? Have mercury fillings? Fungal infection on a toenail? (Btw, I'm not a doctor, just a patient who reads and is on the internet way too much looking for a new magic cure.) The reason I ask, and it's a fear of mine that iron supplements can feed candida and make it stronger. The cure for candida is an almost impossible diet eliminating processed foods, sugars, wheat and removal of mercury fillings. Unfortunately the medical community is a little slow making the connection. Another cause of anemia (with apologies to the men on the forum) is heavy periods which anemia can just continue to make things worse in an endless loop.

 

If you don't think I'm crazy and would like to learn more, read "The Gut and Psychology Syndrome" by Natasha McBride Cambell. A lot of the info is directed toward parents of autistic kids but it also pertains to candida.

Hi Dona, thanks for the reply.  No I've not taken a lot of antiobiotics and I don't eat a lot of processed and/or sugary foods.  Negative on everything else as well.  Had a TAB in 2004, 5 years prior to being dx with CML.  I having no other bleeding disorders/problems--I've been checked inside & out, top to bottom!  I haven't taken iron supplements in years; doc says not to as it wouldn't help my problem.  So, I have learned to just go with the flow.



#36 DebDoodah22

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Posted 26 February 2015 - 08:44 PM

One at dx in 11/2013...but the onc had difficulty extracting a sample and abandoned attempts from the lower back-hip area and instead took the sample from my sternum...has anyone else had this?

It was painful and created this strange "sucking the life out" feeling but very simple...over quickly and produced a suitable sample or enough to determine ph+...given the option, I would do this again.

#37 gerry

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Posted 26 February 2015 - 11:43 PM

Leslie,

I never knew a BMB showed iron stores. Learn something new everyday.

 

Something to think about... have you taken a lot of antibotics? Eat a lot of processed and/or sugary foods? Have mercury fillings? Fungal infection on a toenail? (Btw, I'm not a doctor, just a patient who reads and is on the internet way too much looking for a new magic cure.) The reason I ask, and it's a fear of mine that iron supplements can feed candida and make it stronger. The cure for candida is an almost impossible diet eliminating processed foods, sugars, wheat and removal of mercury fillings. Unfortunately the medical community is a little slow making the connection. Another cause of anemia (with apologies to the men on the forum) is heavy periods which anemia can just continue to make things worse in an endless loop.

 

If you don't think I'm crazy and would like to learn more, read "The Gut and Psychology Syndrome" by Natasha McBride Cambell. A lot of the info is directed toward parents of autistic kids but it also pertains to candida.

 

Following my first BMB  I was told I had no iron stored in my bones, due to heavy periods for me.



#38 Dona_B

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Posted 28 February 2015 - 10:25 PM

Gerry,

What was your treatment for anemia?


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


#39 lplaskin

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Posted 01 March 2015 - 07:23 AM

I have getting 'iron'' infusions once a week for 12 weeks (there was a break after the first 6 infusions).  The doctor feels that iron supplements and high iron diet, which I've tried following since my initial diagnosis of anemia in 2011-2012, has not helped.  The initial treatment I received in 2011, was 1 round of iron transufions, which did nothing, and then blood transfusions (my H&H was so low, I had no choice).  So far, the current iron transfusions are not really helping. :mellow: :(



#40 Dona_B

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Posted 01 March 2015 - 03:59 PM

Leslie,

That is puzzling. I hope your doctor(s) figure that one out. Wondering if anemia is common with CML patients due to our blood issues.

 

I think my anemia/severe back pain is bothering me more than my CML. The CML is cancer and gets empathy. Anemia and back pain I should be able to push through. Ah the joys but better than the alternative.


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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