12 replies to this topic

[aescal318]

ok so now i am freaking out!

i've been living with this cml now for the past 8 month and had my bone marrow biopsy 2 month ago with flying colors! i't seems like my philadelphia chromosones were so low that my onc told me that everything was looking very promising! and i just been doing blood work once every month, i feel and look great and i don't have any type of side effects from gleevec whatsoever. well this is where it gets interesting, i decided to get some blood test done lately and not wait for my corresponding 1 month blood test and it seems that my platelets has gone dowm to the low 20! how can it come down from 140 to the 20's in a matter of 14 days?? is it the gleevec??? what now?? my onc wants to do another biopsy in a couple of days and it's back to getting blood work done a couple of times a week! has somebody gone thru this??

[Tedsey]

Well, I have heard (snicker---the snicker is for someone else because I am a long-term low PLT person and have almost exhausted the subject), low PLT are common when you first start a TKI.  PLT are often the last the blood cells to get under control.  And having low PLT does NOT necessarily mean the disease is progressing.  I have had PLT in the 20-30,000 range for about 18 months already (within the first week on Gleevec, my PLT went from 600,000 to 50,000 and now stay stable between 20-30,000).  I guess this is unusual, but I have not progressed as of yet.  And I achieved a complete cytogenic response at 1 year.  So, try not to worry that much.  Also, blood counts fluctuate at any given time of the day or day by day.  I have experienced large fluctuations in PLT when I was first diagnosed.  So far, I am plugging along, but clotting normally, not bruising, and feeling well.  Just watch for signs of bleeding.  I am sure your onc already told you what to be on the lookout for.

Good luck.  Keep posting how you are doing.  My guess is that they will come back up again soon.

Tedsey

[CallMeLucky]

114 to 20 does seem like an awfully big drop for someone who was stable and on treatment for 8 months.  Is it possible the test was wrong?  Any chance it was 200 and not 20?  I'm sure your doctor looked it over.  If it were me I would ask to repeat the CBC and see what comes back.

Where are you on FISH and PCR testing?  Have you reached a Complete Cytogenetic Response?

[Trey]

Probably should repeat the CBC blood test before going through the rest since it could easily be a test failure.

[aescal318]

thanks everybody for your input

it's been a hectic couple of days of in and out of hopital and 2 bone marrow biopsy plus platelets infusion and i still don't have a "clear" answer my onc says he is not sure what is happening considering that i have been responding well for the last 8 month and the sudden dramatic platelets drop is very discouraging it seens that i had a bit of a rise of blast cells in my latest cbc test and all in a short period of 2 weeks. he tells me that it could be a mutation in the cells and i've grown a resistant to the gleevec but my wbc has remain in a safe range of 4 and 10. can somebody explain to me the dfiftyps of mutations they are and if these are associated in anyway with the low platelets counts? any little help will be appreciated! thanks

[Trey]

Your CBC, including the platelets issue, tells you nothing (zero, zip, nada) about your CML status.  Your last BMB was apparently "clean" or very low, so that is the last known status to go by.  If your Onc is concerned, a FISH or PCR sgould be done.  The blast cell count (progenitor level WBCs) can fluctuate and come in spurts at times, especially if you have low blood counts.  Unless the Onc knows something else (ask), you have no data to cause concern.

[aescal318]

just a quick update on my status

well it seems that my CML and has changed to ALL. as i write this i'm in the cancer wing over at CINJ in robert wood johnson in NJ and i have to admit that the last 24 hours has not been a walk in the park. I've been trying to get a grasp on this and and i've been hit with large chunks of info about this all in the same time. I just having a hard time getting a grip on this considering that all my test where flying colors that last 2 weeks(fish. bcr, BMB etc.) i am currently waiting to start my quemo treatment tonite or early tomorrow morning because my doctors feel that it's the best way to attack this thing.i am so frustraded and confused to say the least.

[CallMeLucky]

Hey - I'm very sorry to hear about this change in status, I think we all worry about this a little in the back of minds and hope it doesn't happen.  I can only imagine how frustrated and scared you must be right now.  I really don't know what to say, other than that I will be thinking about you and hoping for the best.  I've read of a few people this has happened to and they have pulled through it, hopefully one of them will read this and add something on.  Hang in there and try to be strong, I really really hope the best for you.

[JoshLee]

Prayers coming your way. Stay strong and keep fighting!

[Trey]

And what tests showed your Onc this change???

[aescal318]

hello all

to answer your question trey it was in my pathology report and my flow sytonetry I don't know if i'm writing the last one correctly and i also seen an increase of my blast ( manual) every single day the team of oncs that are treating me said all the changes occurred in the last couple of weeks considering that everything was "normal" i was in the processed of getting a second opinion from sloan kettering in which they had all my necessary paperwork except my last BMB results that they needed for a consultation they are going to start with a treatment called hyper cvad. i am in much better spirits now considering that i'm surrounded with a loving family and friends but i just feel that i need more answers.

[Trey]

Hyper CVAD is chemotherapy.  Personally, before I would let anyone put chemo into me I would want to understand: 1) what is my current CML status? 2) explain the test results to me in terms I can understand (didn't my last BMB show good progress?) 3) why shouldn't I try another CML drug first (Sprycel or Tasigna)?

If it were me, I would not let them put any CVAD into me before sorting out the second opinion and answering these questions.

[Samcerly]

Sending you prayers!  Saw in your post you were considering a 2cd opinion at Sloan Kettering.  Just wanted to put it out there, that is where I am being treated and have been very, very happy with them.  Best wishes!