22 replies to this topic

[annmarieparisi]

Hi Everyone,
I have been spending the last few weeks reading over your blogs and have decided that it is time to join in.  On March 4th my husband was diagnosed with CML in blast crisis.  He had been complaining of night sweats and tiredness for about a month.  He is a retired war vet with PTSD so night sweats were not uncommon except that they were getting more frequent.  He had been on vacation all of February with his family in Puerto Rico.  He came home on 2/27 and spent the whole week end in bed.  He was due for some blood work and went into the VA to have it done on 3/4 (his birthday no less).  A few hours later he received a call saying that he needed to return to the VA that they found something in his blood and would need to be hospitalized.  So I left work and took him to the VA.  We were met by a hematologist who explained to him that his white blood cells were way too high and that he was severely anemic.  She told us that he had Leukemia and that he was being referred to Roswell Park Cancer institute.  Fortunately we live in Buffalo NY.  So he was admitted to Roswell and by the end of the next day he began chemo.

His initial BMB stated this:
Bone Marrow Touch Imprints and Core Biopsy:
Chronic Myeloid Leukemia in Myeloid Blast Crisis, showing 35% myeloblasts in a hypercellular marrow for age (90% cellular) see comment. Peripheral Blood Smear: Leukocytosis with circulating myeoblasts (28% blasts), neutrophil left shift with occasional pelgeroid forms, absolute basophilia, normocytic anemia and thrombocytopenia. 
Comment: preliminary cytogenetic studies report a complex karyotype in addition to the presence of t(9,22) with 45,XY, add (8p)?t(8p;22q), t(9;22),add(16q)/t(16q;17q),-17 in 6 cells.  the blasts are negative for CD34, TdT, PAX-5, and positive for CD117.  Molecular studies for p190 and p210 transcripts are pending. 

Apparently his BCR-ABL chromosome did a disappearing act during several tests and he also has other issues going on with his chromosomes.  So they have sent his BMB to the mayo clinic for a second opinion with more sensitive testing.

As for his treatment so far he has received Cytarabine and Daunorubicin Induction (7+3) which was round the clock for the first seven days and in addition to that he is receiving Dasatinib 140 mg. every day.  He has been battling pneumonia which apparently was something he picked up in the hospital and has been going on for almost two weeks.  He has had some very high fevers....last night it was 105.98!  They keep assuring me that once his numbers bounce back he will be able to kick the infection.  He had another BMB on day 14 which showed significant treatment related changes with markedly decreased hematopoises, increased plasma cells, stromal and cell distribution and estimated to comprise approximately 5% of the cellular marrow.  Correlation with cytogenic studies is suggested. So they are now waiting for his numbers to bounce back. As of today his wbc is 0.62 up from 0.2 a few days ago.  His hemoglobin today is 7.4.  He will have another BMB in about a week if his numbers have bounced back sufficiently.  We are looking towards a bone marrow transplant.  He has six siblings.  3 have already been tested and were not a match....we are waiting on the results of the other three.

So after all of this information I have two questions.  Is there anyone in the network who has been diagnosed in blast Crisis?  Does anyone know how to read the initial BMB? I understand the gist of it but am interested in any in depth information that can be given.  

Let me just say that I have read several of your blogs and admire how you have all armed yourselves with knowledge.  The camaraderie and support you have all shown to one another is truly awesome!

 

 

[PhilB]

Hi Annmarie,

I think Trey is going to be the only person on here who will be able to decode that BMB in any great detail in terms of knowing the significance of that deletion and all those translocations.  I'm sure he'll be along shortly.  Have you tried asking on the bone marrow transplant board?  Someone who has been successfully treated via a BMT would be more likely to be hanging out with the big kids on that board.

[annmarieparisi]

Hi PhilB,

Thank you for the suggestion.  I didn't even think of that.  With all that's been going on I can very easily miss the most obvious.  I will give it a try.

[Busa]

Hi AnnMarie,

 

Was your husband deployed to either Baghdad or Mosul Iraq?  There are huge number of us who were and have developed different forms of cancer. Here is one to start, for some reason I can't cut and paste websites addy's here:

gulfwarchemicals.com

[annmarieparisi]

Hi Busa,

He was in Afghanistan and we have been reading about the effects of the burn pits on soldiers who served in Iraq and Afghanistan.  The VA also documented his disease in case in the "future" they find that soldiers have become ill because of it.  We all know the answer now of course. Thanks for the article....I am interested in reading up on the subject.

[Busa]

I PM'd you two sites which may be of value.  For some reason I can't cut & paste into the dialog box...

 

It could be I'm really stupid.

[annmarieparisi]

Thanks! don't worry I am the same way. I  just can't seem to figure out how to get my picture up! Haha!  I happen to be the most technologically illiterate person around.  I really appreciate the info.

[Trey]

If you would paste a photo or multiple photos of his BMB report with personal info blanked out I can tell you what I see.  Your typing was not exact so I need to see every letter and marking exactly as the report shows it.

 

Here is how to add photos to a post:

http://community.lls...osts/?hl=photos

Edited by Trey, 01 April 2015 - 05:32 PM.

[scuba]

Hi Everyone,
I have been spending the last few weeks reading over your blogs and have decided that it is time to join in.  On March 4th my husband was diagnosed with CML in blast crisis.  He had been complaining of night sweats and tiredness for about a month.  He is a retired war vet with PTSD so night sweats were not uncommon except that they were getting more frequent.  He had been on vacation all of February with his family in Puerto Rico.  He came home on 2/27 and spent the whole week end in bed.  He was due for some blood work and went into the VA to have it done on 3/4 (his birthday no less).  A few hours later he received a call saying that he needed to return to the VA that they found something in his blood and would need to be hospitalized.  So I left work and took him to the VA.  We were met by a hematologist who explained to him that his white blood cells were way too high and that he was severely anemic.  She told us that he had Leukemia and that he was being referred to Roswell Park Cancer institute.  Fortunately we live in Buffalo NY.  So he was admitted to Roswell and by the end of the next day he began chemo.

His initial BMB stated this:
Bone Marrow Touch Imprints and Core Biopsy:
Chronic Myeloid Leukemia in Myeloid Blast Crisis, showing 35% myeloblasts in a hypercellular marrow for age (90% cellular) see comment. Peripheral Blood Smear: Leukocytosis with circulating myeoblasts (28% blasts), neutrophil left shift with occasional pelgeroid forms, absolute basophilia, normocytic anemia and thrombocytopenia. 
Comment: preliminary cytogenetic studies report a complex karyotype in addition to the presence of t(9,22) with 45,XY, add (8p)?t(8p;22q), t(9;22),add(16q)/t(16q;17q),-17 in 6 cells.  the blasts are negative for CD34, TdT, PAX-5, and positive for CD117.  Molecular studies for p190 and p210 transcripts are pending. 

Apparently his BCR-ABL chromosome did a disappearing act during several tests and he also has other issues going on with his chromosomes.  So they have sent his BMB to the mayo clinic for a second opinion with more sensitive testing.

As for his treatment so far he has received Cytarabine and Daunorubicin Induction (7+3) which was round the clock for the first seven days and in addition to that he is receiving Dasatinib 140 mg. every day.  He has been battling pneumonia which apparently was something he picked up in the hospital and has been going on for almost two weeks.  He has had some very high fevers....last night it was 105.98!  They keep assuring me that once his numbers bounce back he will be able to kick the infection.  He had another BMB on day 14 which showed significant treatment related changes with markedly decreased hematopoises, increased plasma cells, stromal and cell distribution and estimated to comprise approximately 5% of the cellular marrow.  Correlation with cytogenic studies is suggested. So they are now waiting for his numbers to bounce back. As of today his wbc is 0.62 up from 0.2 a few days ago.  His hemoglobin today is 7.4.  He will have another BMB in about a week if his numbers have bounced back sufficiently.  We are looking towards a bone marrow transplant.  He has six siblings.  3 have already been tested and were not a match....we are waiting on the results of the other three.

So after all of this information I have two questions.  Is there anyone in the network who has been diagnosed in blast Crisis?  Does anyone know how to read the initial BMB? I understand the gist of it but am interested in any in depth information that can be given.  

Let me just say that I have read several of your blogs and admire how you have all armed yourselves with knowledge.  The camaraderie and support you have all shown to one another is truly awesome!

 

Trey's your man to decode the BMB and offer insights.

Also - what is your husbands vitamin D level? I suspect it is very low. Vitamin D has been shown to help blast cells differentiate:

 

http://www.hindawi.c...rt/2012/125814/

 

Nutritional support in addition to what Trey has to say can help. 

 

(note: Vitamin D is not magic. It's like anything else we do to help ourselves. There is no one magic bullet to fix CML although TKI's have been a Godsend. In Blast crisis, there is evidence that nutrition (especially vitamin D, perhaps Curcumin, K2, etc.) can be supportive to help the TKI's gain an advantage. There is debate on vitamin D. I, for one, am a convert - others are not). Best of luck and time.

[annmarieparisi]

 SKMBT_36315040812210.pdf   377.59KB   43 downloads

 

Hi Trey,

I hope I did this correctly.  Let me know. Thanks!  Also thank you Scuba for the information on nutrition.  I will check it out.  I am not sure about his Vitamin D but I will ask.  Sorry to just be responding.  He was in ICU for most of last week.  He had pneumonia and fevers as high as 109.  His counts bounced back with a vengeance and they think that was the primary reason for the high fevers.  He was discharged yesterday which seems so strange since he was so ill last week.  But he is happy to be home and feeling much better.  Now on to consolidation therapy and then hopefully transplant.  He had another BMB on Monday and we should have the results next week.  Hopefully there will be no sign of the BCR-ABL chromosome.  There was no match among his six siblings so we are looking at finding a match in the registry.  Thanks for the help I really appreciate it.

[Trey]

He has a high risk form of CML which requires a bone marrow transplant.  If successful, the transplant would wipe out his entire blood making system and start over with a new one.  You may want to read this to understand the basics of bone marrow transplant:

http://community.lls...nsplant +basics

 

He has a complex blood cell karyotype, meaning his chromosome mutations in his blood cells are more than most CML patients would have.  That increases the risk level.  Most of us with CML can just take one of the several drugs available, but he will require a bone marrow transplant.  

 

His chromosome mutations include:

 

t(9;22) This is the standard CML mutation

 

In addition to t(9,22) he also has the following:

1) add (8p) -- some of his blood cells have a duplication in part of chromosome 8

2) t(8p;22q) -- some of his blood cells have a translocation between chromosomes 8 and 22

3) add(16q)/t(16q;17q)  -- some of his blood cells have a duplication in part of chromosome 16 and also a translocation between chromosomes 16 and 17 in those same cells

4) -17 in 6 cells -- some of his blood cells are missing an entire chromosome 17

 

So while most CML patients have only one translocation, he has three plus some other mutations.

 

Chromosomes 8 and 16 involvement as described above could mean he technically has aspects of both CML and AML.  But that does not make much difference since he will be going to transplant.  The transplant will hopefully wipe out all of the current mutated blood cells and start over.

 

Also, these chromosome mutations only apply to blood cells.  Do not be misled by reading about these chromosome mutations in other parts of the body.  They only apply to the blood.

 

He has a lot of blasts in both marrow and circulating blood.  And his Basophils are very high.  Those two things show the Blast Phase.  Also, his platelets are extremely low so he could bleed easily and clot more slowly. 

 

The high blast count also shows that his immune system is weak.  He does not have normal immune cells since they are replaced with mostly blast cells which do not function properly.  This is why he became so ill.  He is more vulnerable to illnesses and infections right now than the average person, so he should take reasonable precautions. 

[Lisa Lisa]

Trey what is the significance of p190 and 210? Is it also a mutation? Is this in CML only and why would it be pending?

[annmarieparisi]

Thanks so much Trey! That was very helpful.  Great question Lisa Lisa I was wondering the same thing.

[Trey]

The BMB report is simply stating that the analysis is ongoing, and the type of CML (P210 or P190) is yet to be determined.

 

To understand more about this issue you can read this:

http://community.lls...ia-an-overview/

[annmarieparisi]

So then even if they have achieved remission he would still need a transplant......correct?

[hannibellemo]

I think the issue here, annmarueparisi, is that your husband has received, is receiving, chemotherapy treatments that none of us have ever received. Remission is not word that is used when taking a TKI, response to the drug is the term we use.

 

The only reason they would use those drugs for CML is in preparation for a BMT (or stem cell transplant, whichever you prefer). So even though he may have achieved remission he couldn't stay there without further treatment, in this case a BMT. Even after the transplant they may have him take a TKI like Sprycel.

 

I wish you both all the best.

[Trey]

The chemo drugs that your husband received are intended to kill off blood cells, both leukemic and good ones, for a short period of time.  The leukemic cells will come back strongly again fairly soon, maybe within a couple months.  After doing this chemo regimen for several cycles the leukemia outsmarts the chemo and becomes very aggressive.  So the answer to your question is yes, he needs a transplant.  This current decrease in white blood cell count due to chemo is only very temporary for him. 

 

When he is preparing for transplant, he will receive much stronger chemo and radiation to kill off his entire blood making system.  The goal is to kill all blood cells, good and bad, and start over with only good cells from a donor.  His current status is not remission or anything like it, but rather it is only a reprieve for a very short while to allow a donor to be found.  He will likely have another round of this chemo in a couple months unless a donor is found right away.

Edited by Trey, 10 April 2015 - 06:05 PM.

[annmarieparisi]

Thank you Trey and Hannibellemo, I was pretty sure that  your reply would be something to that effect.  I don't think that he fully understands that.  We are seeing his Onc on Thursday and I want him to explain everything to him again.  I am concerned because he is still getting soaking night sweats and is currently just on the Dasatinib.  He has his bloods checked every three days and everything on that end seems to be ok.  He did have an elevation in his creatinine so he received some IV fluids and was told to drink more water.  Could the night sweats be a side effect of the Dasatinib?

[Trey]

Between the chemo and the Sprycel and the leukemia any one of them, or a combination, could be to blame.

 

I would ask the Onc the following (take written questions, and paper and pen to write down answers; also get copies of all lab reports)

1) What is the treatment plan?  (I assume it is a bone marrow transplant (BMT) as soon as possible, and rounds of chemo like the first one as needed until the process is started)

2) Has a donor been found?  If so, what degree of matching is the donor? If not, what if a suitable donor is not found soon?  What level of match is considered acceptable? (matching will likely be expressed as X out of 10, with 10 out of 10 highest for most centers)

3) After a donor is found, how long will it take to start the BMT process?

4) What should he be doing now to prepare for a BMT?

5) What testing will be done (and how often) until the BMT starts?

6) Is the diagnosis simply CML or is it a type of AML leukemia?

 

If you want to know the answer: What is the probability of BMT success? 

[DebDoodah22]

Night sweats are both a symptom and side effect of leukemia and Sprycel or chemo.
Please know you and your husband are in our thoughts and prayers for the speedy location of a donor and successful BMT. .