15 replies to this topic

[sarah1403989277]

ok they are saying i am going to need a bmt real soon.what i need to know is how do i find someone to take care of me. my kids are too busy and my boyfriend is not in good enuff health to do it.i will be at ohsu and i was wondering if anyone knows of a way to higher or get a caregiver to help me through this. any suggestions please

[Trey]

What is the rationale for the BMT?  They don't want to see if the Sprycel works for you?  Was this "Little Miss BMT-Onc" at OHSU saying this? 

[sarah1403989277]

no as a matter of fact it was 3 differnt onc/hemo drs. my blood count has had a dramatic drop.plats 34,wbc 2.1 rbc 2.73 lymph 55.0,mono 8.6 neut ab auto 0.7 hgb 10.5 hct 31.0  this is why they are pushing the bmt. and damn i am so tired. they might  have to do aa transfusion. so i guess its bmt time. i have been on the sprycel for over a month so it should be working if its going to dont u think

[Sneezy12]

Please post all of the actual bcr/abl and FISH results as well as the Bone Marrow. Frank

[hannibellemo]

Hi, Sarah,

Did you ever get in touch with Dr. Mauro? It really sounds like you need a CML specialist to look at your case. You will need a lot of care after BMT and that's if things go well, you'll need even more if there are complications. Good luck to you.

There is a transplant discussion board on this site, too, in case you didn't know. You may get more answers to your questions on that board.

Pat

[sarah1403989277]

would u please go to my post in sweets disease i posted them there with trey

[sarah1403989277]

ok sneezy12 i will try and send the info u r requesting.

fish

nuc ish 9q34(ABLIX3,ASSX2)22q11.2(ABL1 CON BCRX1)(60/6000

interpertation fish was preformed using the D -FISH BCR/ABL 1 probes specific for the t(9,22) associated with CML.this probe set allows detection of the BCR/ABL1 gene fusion on both derivative 9 and the derivative 22 chromosome and allows detection of atypical philadelphia translocations

of the total 600 interphase nuclei examined 10% showed abnormal 2r 2g 1f 2a fusion positive signal pattern the abnormal result confirms the cytogenic finding and is consistent with the presence of a BCR-ABL1 fusion positive cell clone as a result of a three way translocation between 9q 22q and 15p

bmb

cbc data wbc 2.8,rbc 3.27,hgb 12.6 hct 36.6 mcv 111.9 mch 38.5 mchc 34.4 rdw 15.4 plt 73 mpv 13.2 manual differental segemented nuetrophilis 31 % band nuetrophilis 1% lymphocytes 61% monocytes 4% eosinophilis 3% there is no eosinophillia or basophilia.platelets are

peripheral blood

the red blood cells are macrocytic and are present in normal number by hemogram indices.there is anisocytosis and frequent elliptocytes,occasional microcytes and scattering teardrop cells present. the white blood cells are dec reased by number,with mild absolute neutropenia. no circulating blasts are identified and there is n o eosinophilia or basophilia. platelets are moderatly decreased and are morophologically un remarkable.

bone marrow ntially to segemented f

the aspirate smears have numerous   particles for evaluation the erythroid precursors have scattered nuclear irregularity,occasional  budding,nuclear  fragmatation and lobation,and rare binucleation.the granulocytic precursors mature sequetially to segemented forms without evidence  of  dyeposis there is mild  eosinophilia 7%  megakaryocytes are present and include abnormally lobated hypolobated and multinucleated forms.the touch imprints are hypocellular bone marrow diff blasts <1% promyyelocytes 4% myelocytes 12% nuetrophilis 12% metamyelocytes 8% segemented nuertr

[sarah1403989277]

metamyelocytes 8% neutrophilis 12% segemented nuetrophilis 6% monocytes 6% eosinophilis 7% lymphocytes 14% plasma cells 1% erythroid precursors 34% myeloid to erythroid ratio 1.5;1

bone marrow core biopsies/aspirate cell block

the 0.5 cm core biopsies have aspiration artifact contain periosteum and have a interpatable length of 0.1 cm the aspirate block contains multiple particles the cellularity is estimated  to be 40% megakaryocytes are present in normal number are focally clustered and include small and large atypical forms.

perphipheral blood

red cell macrocytosis,luekopenia and mild  absosolute nuetropnia,moderate thrombocytopenia

bone marrow 

normocelluar bone with dysmegakaryopoisis and dyserythropoiesis consisent with mydeoplastic syndrome ,mild eosiniphilia,adequate storage of iron

comment

the morphologic findins of dysmegakaryopoiesis and dyserythropoiesis in this bone marrow specimun are compatible with the patients reported history of mydeoplastic syndrome.no morphologic evidence of chronic myelogenous luekemia is identified.

[Trey]

I will repeat what I previously posted about your situation:

You have an unusual Philadelphia Chromosome that is a 3-way translocation, not the "normal" 2-way translocation.  Most CML cases have the translocation between chromosomes 9 and 22, but you also have chromosome 15 involved.  So for you, the Philadelphia Chromosome has swapped pieces of 9, 15, and 22 as shown by the 46,xx,t[9,22,15][q34;q11.2;p11.1][8].  The [8] at the end shows that  8 of the roughly 20 cells examined from the marrow under a microscope had this Philadelphia Chromosome.  Your FISH shows 10% of these same leukemic cells.  You also have Trisomy 8, as shown by the 47,xx+8[12].  The 47 means you have an extra chromosome (should normally read 46), and the +8 says it is an extra copy of chromosome 8 that is added.  So most have 2 copies of chromosome 8, but you have 3 of them in some cells (the [12] shows it was found in 12 out of 20 cells examined).  Otherwise, your Eosinophils are rather high.

So the Oncs look at that and freak out.  "This is unusual, so let's do a BMT" they say.  But you appear to be responding to drug therapy fairly well, and you recently switched to Sprycel.  These 3-way translocations may or may not be aggressive, and there is no way to know except to see how the TKI drugs work.  So far, yours does not appear aggressive, although maybe it is slowing down your drug response somewhat.  Some would argue that the drugs may quit working.  Well, how do they know?  There is no real history of such things on TKI drugs.  But there are others on the L&LS Board who have 3-way translocations who are doing fine on the drugs.  I don't know if the TKIs will work well for the long term, but no one knows that they will not work.  This is uncharted territory. 

All I know is, that if it were me, I would see if the Sprycel gets this into CCyR, and if so, I would stick with it.  And Little Miss BMT-Onc could stick something else.  But maybe that's just me. 

[sarah1403989277]

i hear what your telling me. but i have been on sprycel for over a month and my counts are bottoming out this scares me

[acb]

I know you have a special case, and Trey has given you great feedback about that. I just wanted to chime in and say that is VERY common for counts to bottom out on Sprycel at about the 3 week to month mark. (You can do a search and find several threads about that.) Usually a brief drug break OR a temporary reduction in dosage will help with that. I am no expert (especially with your specialized situation), but it should not mean you are at the BMT stage yet in my opinion. I would think you still have options and some time to allow the drug to work the way it should (once they get your counts to bounce back).

Good luck!! I know how scary it can be. I am on Sprycel and my counts dropped at the 3 week mark but resumed to the normal ranges pretty quickly after a one week drug break. Hopefully you will have a similar experience.

[Trey]

The low counts are irrelevant when it comes to deciding on a BMT.  It means nothing, nada, zippo, zilch, kakka.  Even then, your blood counts are not all that low compared to many others on here.  A BMT would intentionally drive your blood counts to absolute zero -- so what does that mean?  The only thing that matters is drug response, and attaining CCyR or better.  The rest means bovine sharts to a tree. 

Sprycel for one month?  You have not begun to adjust fully to the new drug.  Patience.

[sarah1403989277]

i do have patience. i only posted cos i thought that was what are suppose to do. but when your cbc shows such a dramatic drop and the drs wont lower your dose or let u stop what the heck is a person to do ?i am so damn tired my fatigue level is running at 10 all i want to do is sleep.i havent seen anyone else with these low of counts. please tell me whos to read so i can read what they done pleasemy wbc 2.1 rbc 2.73 plats down to 34.this is way low 4 me. so tell me to go to a cml specialist i did and what did i get a bmt scare. i know trey she is a pusher. but damn who do i believe here.you or  tests and 3 drs,?

[sarah1403989277]

ok guys i just emailed dr mauro i am hoping to get to see him.

[acb]

Hey Sarah,

I tried to reply to your private message but it said your mailbox is full. I think you are only allowed to store a few messages before it is full.

As far as low counts, I am not as versed on the specifics of low counts as others. I was lucky in that mine bounced back quickly after only a one week drug break.I know that Scuba has been a long time sufferer of low counts, and he has been reduced to 20 mg of Sprycel for a long time. I know that Tedsey used to have low counts. When they switched her from Gleevec to Sprycel, they did improve but it took quite a long while, if I remember correctly. You may want to start another message just asking for information from people who have had low counts on Sprycel (or any of the TKIs for that matter). They may not be reading this thread, since they think it is about caregivers for BMTs.

Can you find another specialist OR have your regular oncologist do a phone/email consult with a specialist who deals with low counts a lot (maybe Scuba's doctor - Cortes from MD Anderson)?  I know that your case is specialized, but I would still only consider a BMT as a very last resort (personally).

How often are they doing your blood work right now? Are you on 100 mg Sprycel even with the low counts? Have they tried a break or reduced dosage?

Good luck and please keep asking questions here.

[sarah1403989277]

they are doing cbc monthly and i am on 100 . i also feel i need a break. i might just stop taking them for a few days like i did the tasigna. it helped. i am trying to get to dr mauro . i am also moving back to oregon and i will get back with my onc there she has no problem sending me to ohsu. here i have to fight to get any where. but this is a hick town anyway

heck they wont even do a ekg and the onc i had here NEVER touched me. the only one that did was the nurse doing my vitals.i have better luck with the pa"s then the so called onc.

so i am going to move back home and get them to get me to a cml specialist