14 replies to this topic

[sarahboxley]

So I head in tomorrow for my 3 month pcr and bmb. I am extremely anxious - this waiting game with this disease is really starting to get to me! My bloodwork has looked great so far - I had hematologist response in less than 2 weeks.

I am wondering what y'all think a good pcr response would be at this point. I am taking Gleevec, and I feel really good so far. In the last week, the anxiety has really kicked in though.

Another random question - is it possible to have symptoms like enlarged spleen with a normal blood count? Or is that just a result of a high WBC pre-treatment?

[CallMeLucky]

At three months the results of the FISH test are more important that the PCR.  At this point, in general, I would say any decrease in PCR is good.  Remember that PCR's are hard to compare to other PCR's unless they have been standardized to international scale.  Again, the FISH is more important at this point and again you want to see a decrease from where you were at diagnosis.

Spleen takes time to settle back down once treatment begins so it is possible.  Was your spleen enlarged to begin with?  I recall I had no pain in that area until I was diagnosed and on treatment and learned about the role the spleen plays.  Mine was not enlarged at all, but I felt discomfort there.  May be related to starting treatment or could also be some psychological effect.  In my case it settled down within a couple of months.

Best of luck tomorrow, I get how nervous you are, but it should be fine...Especially with a quick CHR...

[Calalily]

HI Sarah, I was just logging on as wanted to wish you the very best for tomorrow! I know sometimes I dread these things and know I'll be  the same when I've to get mine done but I do remember thinking after the first one it wasn't AS bad as I thought it would be- had it all built up in my head! Will you be able to bring somebody in with you?  That really helped me- someone who would chat away to you that might distract you a little. I've also heard about people bringing in music too...Make sure you ask for plenty of local anaesthetic if you're not having sedation. My oncologist was telling me that it's just an aspiration and not the biopsy part again (just one needle as opposed to two) so it will not be as bad as the first one- I hope this is the same in your case. I'm afraid I've no idea about the pcr results and I'm sure someone on the forum will reply and help you out there. it's great that you're blood work has been good so far and hopefully once you get over tomorrow and hopefully get good results you might feel more back in control of this whole thing! (I'll need you to remind me of all this in a few weeks when I'm going for my next bone marrow!)

Sorry I never got back to you sooner on the other thread. I'm sure you're little man is keeping you on your toes! I hope you will be very successful having baby no 2 when you've got to the molecular response. I hope you will keep me posted on how you get and fingers crossed we'll be sharing baby tips instead of cml tips in time to come!

I started Tasigna 600mg 2 weeks ago- having a lovely variety of side effects at the min- rash, headaches, chest pain and very sensitive sore boobs- what a lovely combination eh?! Hopefully they'll settle down. Bloods are getting better and will hopefully stabilise too.

Will be thinking of you tomorr- please let us know how it goes.

Best Wishes,

Calalily

[ritan/]

good luck! i'm sure it'll be fine. hugs

[Marnie]

Good luck!!  It's always hard to wait for PCR results.  Even after 3+ years, I still get anxious. 

I'm sure that Gleevec is doing its job for you, and you will see good results.  Once you've had 3 PCR tests, then you can start to watch trends, and the numbers become more meaningful. 

Best,

Marnie

[Calalily]

Good luck today x

[sarahboxley]

I just realized that I never replied to this to report my 3 month results. Rude.

First of all the bmb was SO MUCH easier than the first time around!!! I have my next one on March 6, and I am not nervous at all.

My results were positive, which was a wonderful Christmas gift. I am already almost in Complete Cytogenetic response with only 1 chromosome still showing CML. I went from 80% to 5% in 3 months. Woohoo!

Also my PCR dropped from 81% down to 1.83% which is a great start. I am hugely relieved and took a deep breath for the first time since this whole thing started.

I hope that you are doing well Calalily - how is treatment so far for you? I have thought of you often and am keeping my fingers crossed.

[GerryL]

Well done Sarah.

[CallMeLucky]

Great!

[Pin]

That is really good - congratulations!

[Antilogical]

Excellent Response, Sarah!  Congrats, and I share your happiness.

I had my 1-year-anniversary bone marrow biopsy / aspiration yesterday, and am awaiting the results - on pins & needles.  Hoping for similar good news....

[Calalily]

Hello Sarah and congratulations! I was so happy to log in and see your post. I often wondered how you got on and was only thinking of you earlier in the week! You must've been so relieved to get such a great positive result. I just went back to work last Monday so I hadn't been on the forum for a few days. I've been getting on ok i think. The side effects have settled down and my bloods are good. I'm in for my 3 month bmb on Tues so I'm anxious about that but hoping that I will get a good result like you and that I'll be able to relax that things are heading in the right direction! I went to see my PCP yesterday and he gave me some diazepam to take on the day of the bmb so hopefully I'll be a little bit dozed for it!  I hope all is well with you and that your little boy is keeping you busy!

Antilogical, i hope you got really good results too!

[0vercast]

That's amazing for a 3 month result. Mine wasn't even close to that.

[Antilogical]

Woohoo!  Just got my BMBX results.

PCR = Undetected.

FISH = Negative.

Because I achieved PCR-U at 9 months of treatment (3 months ago) and my marrow now has a normal appearance (no longer fibrous), my hem/onc is comfortable cutting my dose of Gleevec from 400 mg to 200 mg.  I started the reduced dosage last night.  When my counts come up into the normal range, he's giving me clearance to get my knee fixed, after which he wants me to return to the full dose.