FISH question

[tedrog]

What does it mean when, eg, the number, here 74%, goes down?

to say 59%?

[cllady01 Former Volunteer]

Tedrog are you saying you had a second FISH that showed a lower number?

Have you been given a diagnosis?

[Hidden]

This is a dual fusion FISH result showing CML, not CLL based on the BCR-ABL 1 genes. I have a website somewhere about this. I will try to find it.

Scott

[Cllcanada Top Poster CURE Hero in reply to Hidden]

I agree it is the Philadelphia gene translocation associated with CML.. no idea about the percentages...

en.m.wikipedia.org/wiki/Phi...

~chris

[cllady01 Former Volunteer in reply to Cllcanada]

Could it not be Mantle Cell also? Or, there have been dual diagnoses with CLL.

[Cllcanada Top Poster CURE Hero in reply to cllady01]

MCL carries t(11;14)(q13;q32) translocation and cyclin D1.

However the Philadelphia gene translocation by itself can not be used as a diagnosis of CML.

~chris

[tedrog in reply to Cllcanada]

I have deletions 11q22 and 13q14. CD38-/ZAP70+,

Neutrophilia with a left shift and Basophilia are also present. (?)

BCR-ABL/t(9;22) dual fusion 74%. now 59%?

[Hidden]

Go here

ncbi.nlm.nih.gov/pmc/articl...

Scott

[tedrog]

yes, clllady01.

79% late Dec, 59% early April.

just wondering about any significance of that particular number changing lower.

Thanks Scott. I couldn't get this percentage thing out of it, though.

I have refused bmb for >4 years. I have agreed to have one (1), next thursday at Moffit.

I request your prayers. :)) As I pray for all of you.

[Cllcanada Top Poster CURE Hero in reply to tedrog]

Samples for FISH are extremely small.. usually 200 cells so sample is tiny with variation in percents...

~chris

[tedrog in reply to Cllcanada]

got it, thank you.

[cllady01 Former Volunteer in reply to tedrog]

If you can, ask for a light sedation for the bmb--you will sleep through it and may have a bit of soreness, but probably nothing else to show for the puncture. I was able to be sedated, and it really helped allay my fears, and I suspect it made the process easier for the Dr. since I was fully relaxed.

From Chris' answer about the samples for FISH, it seems you need to get the BMB to have an answer for your diagnosis---

Here's wishing you the best--would appreciate, if you are mind to, if you would let us know.

[tedrog in reply to cllady01]

i certainly will.

they're going to put me to sleep.

thank you ;))

[kathymac52 in reply to tedrog]

Good idea....my husband did not have sedation first time, and it was very painful. His second one 2 years later was with conscious sedation and it went very well! I am praying your experience and results go well.

[tedrog in reply to kathymac52]

Thank you, kathymac52!

[tedrog]

btw, while I'm here .

i have lower back top buttock problem, athritis and sciatic, not always active but almost always by bedtime, feels like laying on a flat rock in that about 8"x6" area... and also arthritis in my hips -- or wherever it is (both sides) when you walk. If you can see the image at this link goo.gl/images/4RxJPN that is EXACTLY where my back pain/swelling occurs. Can they do it on the other side, equally, as the results go?

Will this be or cause me (or them!) any problems in getting the bmb?

[cllady01 Former Volunteer in reply to tedrog]

You would be best served to make some calls to be sure your situation is understood ahead of time. I do think they can do it on either side, but I would ask, to be sure and when you get there, tell them which side you need it to no be on.

I think I remember them asking me at the time of the BMB and I chose my right side because I have a shoulder situation my left side.

Comment: That pic shows the patient lying on his stomach--they had me on my side.

[tedrog in reply to cllady01]

good stuff. clllady01. the following is not directed at you... or anywhere... if i knew where... maybe it wouldn't exist. ...

I'm overly "technical" (without possessing knowledge! ... i don't care if they do it there, BUT: will it exacerbate those problem areas?

surely, they've covered this a million times... moreover: How was it they're going to put me out and on the wheely cart and do all that stuff without even asking me these questions?

In relation, if you follow me, The doctor's nurse, and this was at my first visit and consultation at the research center, STATED in her verbal read-out of _______\, "...bone marrow biopsy is non-invasive." --I almost jumped out of seat. very bizzare, imnsho.

IDK, very skeptical. I don't like it. :/(

It's true there's medical, especially here in the United States, progresses if you want to call it that, it's becoming more and more patient responsibility for all peripheral aspects of their medical care. However for me as a veteran, I'm tired of it. Very very tired of it. And for me there's been a lot more involved, a hell of a lot more, then simply trying to call the nurse going to ask a few questions. i'm never up in the daytime! I can't get my nuclear stress done because done at 07:30, asked why: drs preference. Getting past that didn't go anywhere. So I tend to fall through the cracks a lot.

At this point if they want to call themselves experts and highest quality professionals, then they should be asking me all these questions FIRST, and certainly well before, NOT SAME DAY, any "procedure." -- I and another have to drive hundreds of miles to do.

But they sure are sending me tons of advertisements and plastic literature and people are contacting me, by every way available, i might add, to sign up for different societies and I'll kinds of stuff, they can sure do that really good.

\.rant

[kathymac52 in reply to tedrog]

When my husband went in for his second BMB, he met with the nurse who would be giving him his conscious sedation. She spent at least 30 min with him asking all kinds of questions regarding general health, etc....took vitals...and did ask him his preference of sides. She was very thorough, and is part of the cancer team. She explained the entire process. And was with him during his recovery period to monitor everything. Our oncologist performed the procedure. I am hoping you will get the same professional treatment. Sometimes doctor preference means that he/she likes that time of day due to other responsibilities. My surgeon for my knee replacement only did surgery in the afternoon. He had office hours in the morning, and did surgery in the afternoon so he would not feel rushed to get back for clinic hours.

[catmad1 in reply to tedrog]

I am amazed at the nurse that stated that BMB is a non invasive procedure. I had one and was not offered any sedation at all, so swore all the way through it! I wonder if the consultant doing it learned any new words?!

[tedrog in reply to catmad1]

yesterday -- i swear -- i talked to the same nurse (the specialist's nurse) making sure of the anesthesia, and she says: "You know, Michael Jackson?" ...as soon as I heard Michael Jack... i tried to stop her, "Whoa Nelly!" i don't know that i'll be taking any treatment from these folks.

first guy wanted to start CLL treatment while completely doesn't review (missed) his own test indicating CML -- second guy (specialist) says forget CLL,...CML, different medication, while his nurse says these other things at our FIRST meeting.

i'm not Aussie, but CRICKEY! runaway!!!

--i did just see a big snake, though! at my door!

[tedrog]

Also the JAK2 results (2) (last Dec 28) are: not detected (normal).

[MsLockYourPosts Passed Volunteer]

Sent "chat" as the original post is not locked and I don't like reading about myself on google, or wherever.