19 replies to this topic

[gagne]

Can anyone point to literature that says a BMB after diagnosis is not needed? I had one at diagnosis. My doctor says another is needed at PCR 0.0% I am currently PCR 0.007% and I do NOT want to get another one if I can avoid it! I have my next results appointment on 12/12. If I am lucky enough to have reached undetectable I want to have info to explain why I do not want to have a BMB.

[Red Cross Kirk]

See page 49 of the NCCN patient information booklet.

 

https://www.nccn.org...l/index.html#50

[campanula]

I'm having one done again at my first year appointment, but only because I have a second chromosome translocation and we want to see if it's still there.  It's my understanding that this is not the norm anymore and that BCR/ABL p210 testing has replaced the need for any subsequent BMB after the initial one - unless you have something unusual going on that can only be detected in a BMB.

[Trey]

Agree the NCCN guidelines provide the supporting documentation for no BMB after CCyR.  By definition, a BMB cannot find leukemic cells after CCyR, which is roughly 1% PCR.

 

for Campanula:

The BMB can be done for you to check for the secondary chromosome translocation, but if that secondary translocation is combined with the leukemic cells as a two-way translocation, and you are CCyR, it would not be seen by a BMB due to low sample size (about 20 dividing cells).  But if the translocation was in non-leukemic cells, it could be seen if still present.

[gagne]

Thank you! Red Cross Kirk and Trey: The link is exactly what I was looking for but could not find. Campanula, I hope that you will be able to avoid the BMB. I really appreaciate they support that the members of this group provides!

[campanula]

Thanks, Trey - I think my doctor suspects the 10:17 translocation is part of the "leukemic bundle" and won't show up because we have targeted and killed the BCR/ABL cells.  That is why we waited a year for the second BMB.  If it is still there, we plan to sample another tissue (i.e., skin) to see if it's present elsewhere, and if so, that would make it a constitutional translocation.  Make sense?

 

gagne:  Unfortunately, I feel as though I can't avoid this BMB.  The first one wasn't too bad (no advance notice, local anesthetic only), but this one will be done by another person at another facility, and I am nervous.  But fentanyl was mentioned, so I guess I'm covered.

[Trey]

If it is still there, we plan to sample another tissue (i.e., skin) to see if it's present elsewhere, and if so, that would make it a constitutional translocation.  Make sense?

 

The t(10;17) would probably only be either blood or solid tumor.  In your case it is very likely blood only.  I doubt skin would find it.  I assume you do not have thyroid or kidneys problems, which are the most likely areas for a t(10;17) sarcoma.

[campanula]

Right - very healthy, just CML.  I am cautiously optimistic!

[gagne]

Unfortunately, I did not need the info to back up no bone marrow biopsy because my number went up instead of down.It was 0.007% in September and is now 0.009% in December. Dr. said we probably need to change my medication to one of the second generation TKI's. She said that since it is a very small increase we can wait until the end of February to give it one more chance to improve. This way if I do have to change to a new medicine I will not have to make the adjustments over the holiday. I am so disappointed. I really want to just reach undetectable and not have to deal with any potential changes.

[gerry]

Doc is right to wait, that is a minuscule advance, at the moment I would consider it a blip. It needs to be a trend.

[hannibellemo]

Gagne,

 

Your numbers are essentially the same and very low, I might add. There is certainly no reason to jump to a new drug (and new side effects), I'm glad your doctor is being prudent and not jumping the gun.

 

Good luck!

[gagne]

Thanks Gerry and Hannibellemo! The doctor talked about wanting to change the meds if I am still not undetectable next time because there is research that shows the best long term outcomes if you can reach undetectable by 18 months. I am at 19 months now. I was bummed today but I will just table my frustration and see what happens at the end of February. I would prefer not to change meds but I would also like to get to undetectable so I can start counting down the years to being able to try going treatment free. I can't start that countdown if I don't get to undetectable. I also have a slight irrational thought that the fact that I now have the generic Gleevec is some how to blame. Intellectually, I know it is not to blame but emotionally I wonder!

[Red Cross Kirk]

Unfortunately, I did not need the info to back up no bone marrow biopsy because my number went up instead of down.It was 0.007% in September and is now 0.009% in December. Dr. said we probably need to change my medication to one of the second generation TKI's. She said that since it is a very small increase we can wait until the end of February to give it one more chance to improve. This way if I do have to change to a new medicine I will not have to make the adjustments over the holiday. I am so disappointed. I really want to just reach undetectable and not have to deal with any potential changes.

So are you saying your doctor did another BMB?!

 

Your last two results are the same if you consider the accuracy of the test.  I'm not a doctor, but I don't think you should be disappointed.  You're nearly undectable.

[gerry]

Thanks Gerry and Hannibellemo! The doctor talked about wanting to change the meds if I am still not undetectable next time because there is research that shows the best long term outcomes if you can reach undetectable by 18 months. I am at 19 months now. I was bummed today but I will just table my frustration and see what happens at the end of February. I would prefer not to change meds but I would also like to get to undetectable so I can start counting down the years to being able to try going treatment free. I can't start that countdown if I don't get to undetectable. I also have a slight irrational thought that the fact that I now have the generic Gleevec is some how to blame. Intellectually, I know it is not to blame but emotionally I wonder!

I wonder if you might be better off switching anyways if your goal is to try cessation. One of the cessation results that Scuba posted showed a higher success rate with sprycel.

[gagne]

Red Cross Kirk: No BMB! I was hoping to be undetectable so I planned to show the Doctor the data that says no BMB needed. Unfortunately, I went up not down so I need need need to convince her! The a few months ago the doctor had mentioned that it was protocol to get another BMB when you are undetectable.

Gerry: I am going to think about switching if I go up again. I am just not looking forward to dealing with possible new side effects if I changed meds. I am only 53 so I do hope that one day I can stop the meds.

[gerry]

If you need to switch I would go to Sprycel as the results show a higher success rate at cessation than gleevec. And talk to the doc about starting at a lower dosage maybe 70mg. The people on Sprycel would have better info than me I was only on Gleevec.

[campanula]

Congratulations, gagne!

 

Earlier this month I had a BMB and received the good news:  second translocation (10;17) gone!  I had the BMB done in a separate facility, a well-respected regional cancer treatment/research center that does them routinely (multiple times per day).  This was my second BMB in one year, and so I was able to contrast it to the first, which was done in my previous doctor's office (an onc/hem).  It made all the difference in the world, and I didn't think the first one was too bad.  So my advice is to, if at all possible, get one done at a place that does them routinely.  I think it's perfectly acceptable to ask a facility how many times they perform BMBs in a year/month/day.  It does make a difference. 

 

On a related note, I learned from my doctor, a specialist at the center, that she does not go below the second decimal place in divulging PCR results.  Earlier, I had been mistakenly given that information, but now I am just being told "<0.01" because, I am told, that is the threshold that matters and readings below that level can be fickle.  It makes sense to me, and gives me a lot of peace of mind.  I'm not undetectable (yet) but doing great.  So I'm really confused as to why gagne's doctor is concerned about a "jump" from 0.007 to 0.009.  And is it really true that the best possible outcome is undetectable at 18 months?

 

BTW, my doctor is thrilled with my quick progress, especially on imatinib, and mentioned possible dose reduction in November and maybe trying cessation in a few years (she has trials).

[Judithb]

I was diagnosed 9/15.  Quickly went to PCRU with Tasigna and Gleevec by April 2016.  Dr. Brian Druker at OHSU told me since my response was so quick, I need not have another BMB.  My onco at Moffett did not agree but when she heard what he said, she let me skip it. I have had PCRU every 3 months since April 2016.  Next one this month.

 

Good luck!

[gagne]

Campanula: Great news on your translocation disappearing. I like the second digit concept. I think that three digits after the decimal point leaves too much variance. Great news that the BMB was painless at the center. Hopefully, I will not need to put that info to the test any time soon but it is good to know.

Judith: Glad to see that you are doing well.

[kat73]

Campanula - Wow, your "bio" is the example of THE best case scenario!  Very happy for you!

 

Judithb - I've been wondering where you went - glad to hear from you all that good news.  I love Sarasota, btw - my son's youth orchestra went there and my husband and I included the week-long event as a vacation, sitting in on rehearsals, other performances, etc. - without having to be chaperones Beautiful place.

 

I wish I could have been fast, like you two.  I was content, however, as a turtle until I started to become a problem patient.  I never thought I would get pleural effusions, for instance, and have to interrupt that turtle march to undetectable.  Enh - everybody's got troubles. . . and a story.